Direct Payments, Independent Living and Mental Health: Full Report

Abstract

This is a full report of the evaluation of a national pilot to enable with with mental health needs to access 'direct payments' in 5 local authority sites in England from 2001-2003.

Full text

Contents
1Background to the study 6
1.1 Introduction 6
1.2 Overview of direct payments
and mental health literature 7
1.3 Outline of the national pilot 9
1.4 Outline of the evaluation 12
1.5 Report structure 13
1.6 Terminology used 14
2Methodology 15
2.1 Study focus 15
2.2 Research design 15
2.3 Data collection 16
2.4 Data analysis 18
2.5 Ethical approval 18
2.6 Methodological issues
and study limitations 19
3Progress in implementation 20
3.1 Overview of par ticipating sites 20
3.2 Similarities and differences
in implementation 21
3.3 Progress across sites 23
4Using direct payments 33
4.1 Recipient use of direct payments 33
4.2 Case studies 35
5Understanding the benefits 37
of direct payments
in mental health
5.1 Self reported impact on
‘Quality of Life’ 37
5.2 Identifying the benefits of
direct payments 39
5.3 Flexibility, choice and control 44
6Implementing direct payments 46
in mental health: Contextual
and organisational issues
6.1 Changing national and local context 46
6.2 Leadership 47
6.3 Co-ordination: the role of
the steering group 49
6.4 Pathways, policies and procedures 50
6.5 Funding 52
6.6 Knowledge and awareness amongst
care co-ordinators 53
6.7 Direct payments support agency 54
6.8 Other organisations 56
6.9 Discussion 57
7Gatekeeping direct payments: 58
The role of care co-ordinators
7.1 Key factors in care co-ordinators
referring to direct payments 58
7.2 Key factors in the ‘selection’
of clients 61
7.3 Widening accessibility 63
7.4 Other factors 64
7.5 Discussion 67

8Implementing direct payments 69
in mental health: Issues raised
by care co-ordinators
8.1 Mental health specific issues 70
8.2 Responsibility for client care 71
8.3 Support to manage direct payments 72
8.4 Employing PAs 73
8.5 Discussion 75
9Experiences of getting on 76
direct payments
9.1 Assessments 77
9.2 Difficulties getting direct payments 79
10 Experiences of managing 81
direct payments
10.1 Managing the money
and paperwork 81
10.2 Additional support 83
10.3 Personal assistants 85
10.4 Employing PAs in practice 88
10.5 Additional support with
employing PAs 91
10.6 Discussion 93
11 Conclusions and 94
recommendations
11.1 Impact of National Pilot 94
11.2 Conclusions and Implications 95
11.3 Recommendations 100
References 103
Appendices 105
Appendix A:
Mental health exclusions 105
Appendix B:
National agencies and resources 106
Appendix C:
National pilot information 106

List of Boxes,Tables and Figures
BOXES
Chapter 3
Box 3.1 Pilot site characteristics 20
Box 3.2 Community Mental
Health Team case study 26
FIGURES
Chapter 3
Figure 3.1 Source of initial referrals
(total numbers) 26
Figure 3.2 Care co-ordinator involved
in agreed DP packages 27
Figure 3.3 Sources of successful
referrals 27
Figure 3.4 Uses of direct payments 30
Chapter 5
Figure 5.1 Self reported impact of
on 'Quality of Life' 38
TABLES
Chapter 3
Ta b le 3.1 Referrals and outcomes
across pilot sites 24
Ta b le 3.2 Direct payments (DPs)
by CPA Population 25
Ta b le 3.3 Referrals and outcomes
by pilot site 25
Ta b le 3.4 Gender of those referred
for and in receipt of
direct payments 28
Ta b le 3.5 Ethnicity of direct
payment recipients 28
Ta b le 3.6 Age of direct payment
recipients 28
Ta b le 3.7 CPA level of direct payment
recipients from two sites 29
Ta b le 3.8 CPA level of all direct
payment recipients 29
Ta b le 3.9 Type of direct payment 30
Ta b le 3.10 Numbers of recipients
employing PAs 31
Ta b le 3.11 Level of packages agreed 31
Ta b le 3.12 Time taken to agree
packages 32

This report is based on a study of the National Pilot to
implement direct payments in mental health which took
place across five Local Authority sites in England from
February 2001 to July 2003. The evaluation used the
experiences of the pilot sites as a vehicle through which to
understand the factors involved in successfully implementing
direct payments in mental health. The evaluation took place
in 2002-2003 during the last year of the pilot. This chapter
provides an overview of the direct payments and mental
health literature and outlines the background to both the
National Pilot and the evaluation.
6
1.1 Introduction
CHAPTER 1
Background
to the study

Despite attempts to exclude people with mental health
needs from direct payments legislation1,the 1996
Community Care Act did make mental health service users,
in theory, eligible for direct payments. However, it has been
rarely promoted or taken up due to a number of factors
working against its realisation. The 1996 consultation paper
on direct payments made no specific reference to mental
health, except in relation to people excluded on the
grounds of their being currently detained under certain
mental health legislation or subject to compulsory
treatment under a court order (current exclusions in
relation to direct payments are listed in Appendix A). The
majority of mental health clients are not subject to this
legislation, nor ongoing compulsory treatment, therefore
this should not in itself have limited their access2.
However, there are ongoing misunderstandings about
eligibility in relation to the exclusion criteria. Currently,
whilst clients on leave from hospital under Section 17 of
the 1983 Mental Health Act are not eligible for direct
payments, it is often wrongly assumed that clients are not
allowed to have direct payments if they are receiving
services provided under section 117 of the Mental Health
Act (after care). The Community Care (Direct Payments)
Act (1996) has been described as a ‘silent victory’ for
mental health service users because, despite legislation,
direct payments are still inaccessible to the majority of
mental health clients due to misunderstandings,
assumptions and lack of awareness (Maglajlic et al 1998
p33). Similarly, Ridley and Jones (2003 p643) draw
attention to the ‘untapped potential’ of direct payments for
mental health service users. However, recent guidance on
direct payments issued by the Department of Health in
September 2003 recommends that Local Authorities
should monitor take-up of direct payments across care
groups to ensure that direct payments are equally
accessible to all care groups (Department of Health 2003).
Local Implementation Teams (LITs) are now being required
to provide figures on direct payments.
Recent national government policy has increased pressure
to develop and extend the take-up of direct payments.
From April 2003, there has been a requirement that Local
Authorities offer direct payments to all people assessed as
needing community care services and who are judged to
be capable of managing their own support through direct
payments by themselves or with assistance (Department of
Health 2003). A number of disabled people, people with
learning disabilities, people with mental health needs, older
people, carers and their advocates are demanding greater
choice, control and flexibility over their suppor t arrange-
ments through such initiatives as direct payments. However,
the quality and availability of support, information and the
promotion of direct payments in practice is still largely
dependent on local circumstances. This evaluation focuses
specifically on the process of implementing direct payments
for people with mental health needs.
The Community Care (Direct Payments) Act (Depar tment
of Health 1996) came into force in April 1997. This gave
Local Authorities the power to offer direct payments to
people currently assessed as eligible for community care
services. However, in practice, for a number of years
accessibility to direct payments was largely confined to
people with physical difficulties. Over the past few years,
there has been a concerted effort by those advocating on
behalf of people with learning difficulties to increase their
access to direct payments, particularly through the
organisation ‘Values into Action’ (see Holman and Bewley
1999; Holman and Collins 1997). There has been no similar
initiative by a national organisation to promote direct
payments in mental health.
It is now widely recognised that there has been a neglect of
mental health and direct payments in both policy and
practice and that low take-up is a concern. A recent text
on social work and direct payments makes the point that it
should be ‘deeply regretted that so few people with mental
health problems have been enabled to access direct
payments’ (Glasby and Littlechild 2002 p75).
7
1.2 Overview of Direct Payments and Mental Health Literature

Although mental health professionals may not actively
discourage their clients from pursuing direct payments,
research has indicated that they were generally sceptical
about the practicality of direct payments (Stainton 2002).
Resistance to direct payments in the mental health field has
been ‘very strong’ (Brandon 1998 p25). Previous research
has identified a number of key barriers to implementation.
Most significantly, there has been a profound lack of
knowledge and awareness of direct payments amongst
users and workers (Bamber 2002; Brandon et al 2000;
Maglajlic et al 1998;2000; Ridley and Jones 2002;2003).
Thus, the most comprehensive study of the barriers in
accessing direct payments in mental health was entitled
‘Direct What?’ drawing explicit attention to the continued
lack of understanding of some of the basics of direct
payments (Ridley and Jones 2002;2003). Brandon et al
(2000 p19) reported an ‘appalling lack of relevant literature’
relating to mental health and direct payments. The majority
of mental health service users and professionals did not
know about direct payments and, if they did, were unsure
about eligibility (Maglajlic 1999; Ridley and Jones 2002).
Although there has not been as great a demand for direct
payments from mental health service users as there has
been from people with physical disabilities, Ridley and Jones
(2003 p656) argue ‘the information deficit is so acute, that
it would be inaccurate to conclude that the lack of demand
equates with a lack of interest’. In this study, professionals
were unaware that service users could be offered as much
support or assistance as needed to manage a direct
payments package (Ridley and Jones 2002). Any mental
health professional3acting as a client’s ‘care co-ordinator’
can carry out a community care assessment for direct
payments. However, many service users will have more
contact with health service professionals, specifically
community psychiatric nurses (CPNs) rather than social
services staff. This has been identified as a potential barrier
because direct payments are still viewed primarily as a
social services initiative (Glasby and Littlechild 2002).
8
Most Local Authorities have not yet given serious
consideration to the implementation of direct payments in
mental health nor to the support that mental health service
users may need in order to access direct payments. In
2003, the Social Services Inspectorate (SSI) reported that
the numbers of mental health service users making use of
direct payment schemes remained very low, even though
numbers have slowly but significantly increased since
autumn 2001 (SSI 2003). At the end of September 2003,
SSI figures indicated that only five Local Authorities had ten
or more mental health service users on direct payments
and 57% of councils had no mental health service users
using direct payments. The repor t concluded that ‘the
potential of direct payments for reducing stigma and social
exclusion, and promoting independence and rehabilitation
among people with mental health problems… is simply not
being exploited’ (SSI 2003 p32) and that there was much
to do to extend the use of direct payments to this group.
A survey of all Local Authorities in Scotland found that out
of a total of 143 people across Scotland who were
receiving direct payments, these did not include any users
of mental health services (Witcher et al 2000). Whilst
Local Authorities were making limited moves to promote
take-up among people with learning disabilities through
working with the Values into Action guidance, they were
giving considerably less thought to promoting take-up
among users of mental health services (Witcher et al
2000). For example, one authority viewed mental health
as the last care group in a 'staged' approach to
implementation.Two years later, a study by the Scottish
Executive found that only two mental health service users
in Scotland were receiving direct payments (Ridley and
Jones 2002).
Outside the UK, there is little evidence of any countries in
which a direct payments or Independent Funding scheme
has been made widely accessible to people with mental
health needs (Brandon 1998; Glasby and Littlechild 2002).
Indeed, a recent study of the ten ‘most promising initiatives’
in Individualised Funding schemes across Canada, the US
and Australia found that mental health service users were
generally not included (Lord and Hutchinson 2003). In
addition, a study of 41 states in the US reported that there
was no current initiative operating such schemes (Pita et al
2001). This background makes the National Pilot extremely
relevant to widening the accessibility of these initiatives to
people experiencing mental distress.

The purpose of the National Pilot to implement direct
payments in mental health was to promote independent
living through the increased take-up of direct payments. It
sought to draw upon the philosophy and practice of
Independent Living developed by the international disability
rights movement (see Barnes 1992; Kestenbaum 1996;
Hasler et al 1999; Charlton 1998). The Independent Living
philosophy4is based upon the idea that disabled people are
oppressed and social structures frequently operate in ways
which disable people from exercising their rights and from
fully participating in communities and activities of their own
choosing. The notion of self-determination which is
inherent in this philosophy does not assume that people
could necessarily meet their needs alone but ‘with
assistance’ (Morris, 1997). It argues that many people
require personal suppor t or other services to ensure their
citizenship and social inclusion and that these supports
must be funded and provided in such a way that the
individual, as far as possible, remains in control. The right to
have Individualised Funding or direct payments to purchase
one’s own support and assistance is central to the
Independent Living philosophy and has been campaigned
for vigorously by disabled people (Campbell, 1998; Glasby
and Littlechild, 2002; Hasler 1999 Stainton and Boyce, 2002;
Zarb and Evans 1998; Evans 2003).
The National Pilot aimed to enable service users to have
greater choice and control over their support arrangements
through using direct payments. It supported individual Local
Authorities to offer direct payments to mental health
service users and to set up local structures necessar y to
facilitate implementation (Bamber 2002). The National
Pilot was launched in February 2001 and ended in July
2003. Five Local Authorities were recruited to take part in
the pilot project.These were the London Borough of
Barnet, Hampshire, Leicester City, Surrey and Tameside
(Greater Manchester). A specific target was set in relation
to facilitating up to 50 mental health service users across
the sites to take-up direct payments, i.e. ten people within
each site.
Evaluation of direct payments amongst other care groups
has demonstrated that the mental health of already existing
direct payments recipients has improved significantly across
care groups, particularly when users employed their own
personal assistants (PAs) (e.g. Glendinning et al 2000a;
2000c; Halliwell and Glendinning 1998).This is even more
reason to explore the possibility of direct payments for
people with mental health needs. Indeed, there has been
some anecdotal evidence suggesting that direct payments
can have a positive impact on for people with mental
health needs through giving people more control, in turn
seen as crucial to maintaining mental health (Irish 1998;
Glendinning et al 2000b; 2000c).
As one direct payments recipient noted:
I benefit a lot from direct payments.The idea of getting
cash, which you control, is brilliant… Instead of a social
worker or nurse dictating what I can and cannot do, it
gives me real control. If I’m going to get back to being
me again… It gives me so much freedom… I’ll fight to
get more control over my life. Now I have more energy
and can think more clearly I want to direct what
happens to me more and more (Irish 1998 p32).
Within this context, the Institute for Applied Health &
Social Policy (IAHSP), King’s College London secured
funding from the Department of Health and the King’s
Fund to establish a national pilot project to promote
independent living through the implementation of direct
payments for people experiencing mental distress. Ridley
and Jones (2002) argue that one way of addressing the
barriers to wider access to direct payments is through
setting up pilot projects to support and evaluate the
process in order to develop the lessons learned for
wider implementation.
9
1.3 Outline of the National Pilot

There were five key components to the National Pilot: site
co-ordination, local steering groups, ‘All Sites Days’, the
e-group and a newsletter. These are outlined in turn.
SITE CO-ORDINATION
The National Pilot was co-ordinated by the Director of the
Leadership and Organisational Development Programme at
IAHSP who oversaw the setting up and development of
the pilot and liaised with the local sites. Part-time5local site
co-ordinators were recruited from within local ser vice user
networks to support implementation at the local level and
to ensure that service users had considerable input into the
direction of the pilot. The site co-ordinators worked
together with local stakeholders such as Local Authority
leads6,local direct payments support ser vices and/or
Independent Living Centres (ILCs) and mental health teams
to assist with implementation and to raise awareness about
the National Pilot within local sites. Site co-ordinators met
together regularly during the duration of the pilot to share
learning and provide peer support. The site co-ordinators
specifically raised important questions and provoked
discussion. They were seen as key to helping with
presentations, providing information, linking with local user
groups and helping to develop procedures such as
self-assessments and advanced directives7.
LOCAL STEERING GROUPS
The site co-ordinators suppor ted the setting up of a local
steering group to facilitate implementation.The local
steering groups invariably acted as the active forum for
overseeing the progress of the pilot. Membership of the
groups was carefully considered to ensure multidisciplinary
and multi-sector representation and commitment to the
pilot process.Thus, where possible, they were chaired by
the Local Authority lead for direct payments in mental
health. As well as the local pilot site co-ordinators,
membership included representation from the direct
payments support ser vice or ILC and, where possible, local
user groups, voluntary sector organisations, mental health
team managers, care co-ordinators, a Local Authority
training officer and finance/contracts officer.
10
Local Authorities were recruited on the basis of agreeing to
the following criteria:
●To be excited by and interested in the project
●To be already implementing direct payments for
other care group(s)
●To have a progressive approach to or have active
user involvement and empowerment in service
commissioning and/or provision
●To try to target black and minority ethnic
communities (3/5 sites)
●To be willing and able to directly provide direct
payments advice and support for up to 10 people
or invest resources into a centre providing direct
payments support (approximate cost £15k)
●To be willing and able to provide some overhead
resources for local administrative support, training,
networking and travel for the area's pilot project
and to support the involvement of service users
(approximate cost £2-5k)
●To be prepared to contribute to the national and
local dissemination of outcomes from the pilot site
●To designate a local senior manager to be the local
contact for the pilot.
Professionals’ ongoing concerns about eligibility and
interpretation of the 1996 direct payments legislation which
states that service users must be ‘willing and able’ to
manage direct payments (with assistance if necessary) had a
number of significant parallels during the National Pilot.
During this report, reference is made to this ‘willing and
able’ clause in relation to the implementation process as
much as to the criteria used for determining a client’s
eligibility. One of the key lessons which became apparent
early in the pilot was that within Local Authorities, key
senior managers and individual care co-ordinators had
themselves to be ‘willing and able’ to support take-up in
order for implementation to be effective. These factors
are explored throughout this report.

E-GROUP
In light of the need to focus on national learning and
develop cross-site discussion, the National Pilot organised
an e-mail discussion group focusing specifically on
implementing direct payments in mental health. All local
sites were encouraged to take part in the discussion group
as well as other Local Authorities in England and any other
individuals and organisations keen to progress
implementation. The e-group encouraged debate and
information-sharing about specific issues relevant to mental
health and direct payments12.Service users trying to access
direct payments in other areas shared some of their
experiences with the e-group and it provided a useful
mechanism for people to be put into contact with each
other. Significantly, it was service users who used the
e-group as much if not more than Local Authority
managers and mental health service professionals. It was
also used more often by people from Local Authorities
outside the National Pilot sites.
NEWSLETTER
In addition, the National Pilot launched a Newsletter
entitled ‘It’s Your Voice’ which was given out to all the
participating sites to circulate within their local areas and
also provided an information resource about the National
Pilot for other areas. The newsletter gave information
about the National Pilot, basic information about
participating sites and reported on any relevant national
policy documents and guidelines. Due to various difficulties
with production, only two newsletters were issued during
the pilot: the first was issued in the middle of the pilot and
the second towards the end of the pilot period.
Their aim was to provide a regular forum to address
ongoing practical issues in relation to implementation and
to provide a focus for the pilot to ensure that
implementation was kept on the local agenda.They enabled
a positive environment where key questions and difficulties
were raised, discussed and addressed8,developed
appropriate local guidelines, pathways and procedures and
facilitated greater communication across the various
sections of the Local Authority and mental health services.
ALL SITES DAYS
The National Pilot organised regular ‘All Sites Days’
approximately every six months during the pilot. Each Local
Authority took turns to host the day and all par ticipating
sites took part to bring together discussion and progress
regarding implementation. Invitations to the day were sent
to steering group members and other individuals identified
as being key to implementation, as well as any clients
accessing direct payments. Often, the individual site that
hosted the day had a mental health direct payments
recipient in attendance for at least part of the day.
Feedback from the evaluation participants suggested that
the days were particularly useful for sites to find out more
about what the other Local Authorities were doing, to
make comparisons and to generate ideas from how
different sites worked. In particular, the aspect of the days
considered most beneficial was the opportunity to share
across the sites9.
However, there was a strong consensus that the days did
not fulfil their potential as an active forum for cross-site
discussion and learning. Site participants were keen to
develop information regarding local guidelines and specific
practice issues10.Most importantly, sites often requested
more information on the actual uses of direct payments
across sites. However, as will be seen, given the slow
process of implementation and take-up, this information
was often not forthcoming until later on in the pilot. In
addition, due to the varied level of knowledge and
involvement of key participants and time constraints,
some participants11 felt that they required a forum in which
they could discuss the complexity of implementation,
including broader strategic issues.
11

In 2002, the National Institute for Mental Health in England
(NIMHE) commissioned IAHSP14 to conduct an evaluation
of the implementation of direct payments for people with
mental health needs.The study commenced in October
2002 and was conducted within the five Local Authorities
sites that took part in the National Pilot.
AIMS AND OBJECTIVES OF THE EVALUATION
The overall aim of the evaluation was to collate and
evaluate the collective learning generated from the National
Pilot about the implementation and take-up of direct
payments in mental health. In doing so, it attempted to
facilitate a variety of accounts that were open, honest and
reflective about the process of implementation. Most
importantly, it sought to explore in-depth the early
experiences of accessing, receiving and managing direct
payments from the perspectives of clients, workers,
managers and other key stakeholders.
12
SERVICE USER CONFERENCE
In addition, IAHSP and the National Centre for
Independent Living (NCIL) developed a series of strategies
to promote direct payments in mental health. In Februar y
2002 they jointly hosted a national conference for mental
health service users to share information and ideas about
direct payments. This was funded by the Joseph Rowntree
Foundation and was written up in ‘Making Choices,Taking
Control’ (Davidson and Luckhurst 2002). The conference
was heavily oversubscribed and over 50 survivors and users
of the mental health system attended from across the UK.
Par ticipants listened to presentations from disability activists
and campaigners, a National Pilot site co-ordinator as well
as from a mental health service user who had been
successfully using direct payments. Participants discussed the
potential of direct payments, peoples’ concerns and
difficulties regarding access to them and possible ways
forward. Following on from this conference, further funding
has been secured from the Joseph Rowntree Foundation to
host another conference. This conference will specifically
address care co-ordinators’ concerns and anxieties and
provide working examples and practice guidelines to
practitioners. Thus, although the National Pilot finished in
July 2003, work started by the project is still being carried
through by various organisations involved in the pilot.
Further, it is hoped to produce a video specifically targeted
at mental health service users detailing peoples’
experiences of using and managing direct payments.
The lack of support offered to mental health service users
generally in accessing direct payments and the
overwhelmingly positive response to the service user
conference13 specifically highlights the necessity for this
project.
1.4 Outline of the Evaluation

The remainder of this report is structured as follows:
●Chapter two outlines the evaluation methods.
It gives an overview of the study focus, research
design and approaches to data collection and
analysis. It identifies methodological issues
encountered in conducting the research and points
out the limitations of the study.
●
Chapter three gives an overview of the sites that
participated in the pilot and outlines various similarities
and differences in implementing direct payments
across sites.The chapter goes on to map progress in
facilitating access and take-up of direct payments
across all five pilot sites during the pilot period.
●Chapter four gives a number of examples of the
various ways in which recipients have used direct
payments.
●Chapter five focuses on participants’ views of the
benefits of using direct payments.
●Chapter six explores the contextual and
organisational factors that suppor ted or hindered
the implementation of mental health direct
payments within the national pilot sites.
●Chapter seven looks at the key role of the care
co-ordinator in the process of implementing direct
payments in mental health. It focuses on their
gate-keeping role in direct payments. In particular, it
considers factors which contribute to their selection
and referral of clients for direct payments as well as
the factors which have supported and hindered
implementation in practice.
●Chapter eight reviews a range of issues raised by
care co-ordinators and the key concerns they
highlighted about progressing direct payments in
mental health.
●Chapters nine and ten present more views of direct
payments recipients themselves. Chapter nine looks
at the process of getting on direct payments and
chapter ten summarises the issues recipients raised
about managing payments.
●Finally, Chapter eleven draws together the main
conclusions from the evaluation findings and makes
recommendations for the development of direct
payments within mental health.
Throughout the following chapters, all extracts from the
data have been anonymised in order to protect
participants’ identity. Where attributions are given, these
refer only to participants’ roles or professional groups, and
not to named individuals. Individual sites are only identified
in relation to illustrating specific points in Chapter three.
In pursuit of these aims, the key objectives were:
1. To identify the range and variable use of direct
payments and to provide ‘real life’ examples of their
implementation in practice.
2. To provide a profile of the characteristics of the
recipients of direct payments across pilot sites.
3. To compare and contrast the approaches to
implementing direct payments within each site, in
particular any differences arising from the models
adopted for the management of direct payments.
This comparison considered any difference arising
from whether direct payments are provided through
an in-house (Local Authority) model or through an
externally commissioned independent organisation
(e.g. ILCs).
4. To highlight the factors which suppor t and hinder
the implementation of direct payments for people
with mental health needs.
5. To explore the process, experience and short term
impact of implementing direct payments for service
users, especially in relation to the exercise of choice
and control, the facilitation of independence and
social inclusion, and the development of user-centred
and culturally sensitive services.
6. To explore the benefits and difficulties arising from
direct payment use.
7. To analyse the research findings within the context
of national guidance, local policies and published
literature.
8. To deliver a final report which provides a thorough
evaluation of the implementation and use of direct
payments by people with mental health needs, draws
conclusions about the kinds of services and types of
support arrangements people need and want and
makes recommendations about the development of
this initiative at local and national levels.
13
1.5 Report Structure

14
In this report we refer primarily to ‘people with mental
health needs’ rather than various other terms that could be
used (e.g. mental distress/mental health problems etc).
Direct payments are based on providing support in
accordance with a person’s assessed mental health needs
and should involve a high degree of self-definition of those
needs.
The term ‘direct payments support worker’ is used as a
generic term throughout the repor t to include those staff
members working for a direct payments suppor t agency
whether or not this is run by a Local Authority or
independent organisation15.Likewise, the term ‘direct
payments support ser vice’ is used whether or not the Local
Authority or an independent organisation (e.g. an ILC)
provides this service.
Specific local pilot sites involved in the national pilot are not
necessarily identified unless a specific comparison is made
between different sites. Also specific job titles are not
attributed to individual research participants. Job titles vary
considerably across sites so using general terms helps to
maintain confidentiality and to identify general issues raised.
More generally, there are difficulties with applying terminology
that has developed in direct payments and the Independent
Living Movement in relation to mental health. Two examples
are discussed below.
The Independent Living Movement often uses the term
‘Personal Assistant User’ to describe people who use direct
payments to organise their own support arrangements.
However, many of the people using direct payments who
took part in this research did not employ Personal Assistants
(PAs). Therefore, in this report we use the rather inadequate
term ‘direct payment recipient’. Furthermore, where
recipients did employ workers, the term ‘Personal Assistant’
did not necessarily capture the variety of tasks in which
workers were involved16.In particular, whilst people with
physical disabilities often used PAs to assist with personal
care, this was less likely amongst those with mental health
needs. However, for consistency of approach and in line with
the Independent Living philosophy, we continue to use the
term PA. Until alternative terms are developed, these terms
seemed the most appropriate for the purposes of this
report.
In addition, it should be noted that this year the Department
of Health will launch a public consultation about renaming
‘direct payments’ as the same term is used by the
Department of Work and Pensions in relation to the paying
welfare benefits directly into beneficiaries’ bank accounts.
Therefore, the term ‘ direct payments’ as used within the
context of this report is likely to change in the future.
1For example when the 1996 direct payments legislation was being
debated in parliament (see Beresford 1996).
2Proposed reforms of the Mental Health Act calling for greater use of
compulsory treatment in the community are cause for concern and it
remains to be seen how this legislation, if passed, may affect progressive
initiatives such as direct payments.
3This is usually the service user’s social worker or CPN but it could also
be a psychiatrist, occupational therapist or psychologist etc.
4See the First International Conference on ‘Self Determination and
Individualized Funding’, Seattle 29th-31st July 2000 which provided a
‘Declaration on Self Determination and Individualized Funding’ for
further explanation of the Independent Living philosophy.
5One day a week.
6i.e. the person identified as having lead responsibility for the pilot in
the local authority.
7Advanced directives are statements made by a person about what they
would (or would not) like to happen to them in the event of a mental
health crisis or lessened capacity that may result in mental health
intervention.They are like 'living wills' and although not, as yet,recog-
nised in law they can be used to influence treatment decisions etc.
(Szmukler et al 2000).
8Such as lack of referrals and training.
9For example, there were sessions when people were divided into their
distinct groups across sites (Local Authority leads, direct payments
support service workers/Independent Living Centre workers or
voluntary organisations/other steering group members) and had the
opportunity to share experiences and discuss issues of concern.
10 Such as local site interpretation of national policy and practices such as
usage of direct payments, local eligibility criteria, charging, training,
funding issues etc.
11 In particular the Local Authority leads, commissioning managers and
senior mental health managers.
12 Such as discussions and queries about Health Act Flexibilities and the
‘willing and able’ assessment criteria.
13 Most notably,the response to the presentation given by the direct
payments recipient was especially positive.
14 It should be noted that during the course of the National Pilot, IAHSP
closed (at the end of July 2003). Following this, the National Pilot
evaluation was co-ordinated and supervised by the Health and Social
Care Advisory Service (HASCAS), although King’s College London con-
tinued to employ the lead researcher. HASCAS was formed from a
merger between the mental health programme of IAHSP (the Centre
for Mental Health Services Development) and the Health Advisory
Service.
15 This term also includes Independent Living Advisors.
16 See Pita et al (2001) which discusses using personal assistance services
in mental health in the US.
1.6 Te r minology Used
Having outlined the background to the study, the following
chapter gives an overview of the evaluation methodology.

Previous research has identified a variety of attitudinal and
practical barriers to implementing direct payments for
mental health service users (Maglajlic et al 1998; Ridley and
Jones 2002; Witcher et al. 2000). For example, the low
level of knowledge about direct payments amongst users,
staff and carers is frequently cited as a barrier across client
groups (Zarb and Naidash 1994, Holman and Bewley 1999)
and specifically in mental health (Ridley and Jones 2002).
The co-existence of this evaluation alongside the National
Pilot made it possible to consider these barriers in more
detail. More importantly, it provides tangible examples of
how these barriers were being addressed in practice.
Research and evaluation of new initiatives are able to
capture issues that are often overlooked in more
established projects (Clark and Spafford 2002). However, as
will become apparent, implementation and take-up was
very slow. In view of this, the data collected referred mainly
to the early stages of implementation and take-up.
In order to meet the aims and objectives of the evaluation,
a multi-method approach was adopted. Predominantly,
qualitative methods were employed to elicit the views of
key informants on the process of implementing the direct
payments and the short-term impact of direct payments for
recipients. However, quantitative approaches were also
adopted to collect data on referral and take-up of direct
payments.
15
2.1 Study Focus
CHAPTER 2
Methodology
2.2 Research Design

Data collection was carried out between November 2002
and September 2003.This comprised five main strands:
1. Semi-structured questionnaires and guided group
discussions with members of site steering groups.
2. Semi-structured interviews with direct payment
recipients, care co-ordinators and the Local
Authority leads for direct payments.
3. Participant obser vation of a sample of meetings
held as part of the National Pilot (All Sites days,
site co-ordinator and steering group meetings).
4. Document analysis of minutes of meetings held
throughout the duration of the pilot.
5. Collection of quantitative data on sources and
outcome of referrals for direct payments, direct
payment packages and the demographic
characteristics of people referred for and those
receiving direct payments.
In addition, interviews were conducted with members of
the National Pilot team (the National Pilot co-ordinator
and site co-ordinators) to explore their perspectives and
observations on progress within and between sites. These
interviews gave a more national perspective from key
players who were influencing implementation from ‘outside’
actual local processes and structures. Furthermore, ongoing
discussions were held with staff from local direct payment
support services to ascer tain progress in implementation.
At least two visits were made to each local direct payments
support service during the duration of the pilot where
informal interviews were carried out with the manager
and the local direct payments support workers.
A range of research instruments were devised to suppor t
data collection.Their design was informed by published
direct payments literature, the study aims and focus,
instruments used in previous studies and local
implementation of direct payments within the pilot sites.
The study was designed to be flexible and responsive to
local arrangements and circumstances. The process for
data collection was as follows.
16
STEERING GROUP MEMBERS
Initially, all steering group members in each site were asked
to fill in a questionnaire.This was followed up by a guided
group discussion with each steering group which was
audio-taped. Analysis of the questionnaires and group
discussions helped to identify local contextual factors and
to establish the key stages in implementation, the extent of
progress made and the factors that had helped and
hindered progress from the perspectives of a crossection of
informants within each locality. An average of eight people
took part in each site.
LOCAL AUTHORITY LEADS
The group discussions were followed up by individual
interviews with the Local Authority lead in each of the five
sites, i.e. the person who was assigned the task of
overseeing implementation at a local level. These interviews
offered an opportunity for exploring the issues raised
within the group discussions in greater depth and gave an
overview of the key local issues helping and hindering
implementation from a strategic commissioning/service
perspective.
CARE CO-ORDINATORS
It has been well documented that although care
co-ordinators are the main point of access to direct
payments, their lack of knowledge and awareness about
direct payments is still a key barrier to enabling mental
health service users to access direct payments (Maglajlic
1999; Ridley and Jones 2002). Therefore, rather than
repeating the focus on establishing the extent of profession-
al knowledge, the evaluation specifically targeted care
co-ordinators who had benefited from the increased
awareness of direct payments through the National Pilot
and who, as a consequence, had actually referred one or
more clients onto direct payments. This offered
opportunity for more in-depth investigation of the beliefs,
ideas and practices of individual care co-ordinators and of
how they facilitate (or prevent) access to direct payments.
2.3 Data Collection

During the pilot, social workers and CPNs made
approximately equal numbers of referrals for direct
payments. In view of this, a cross-section of care
co-ordinators were selected for interview across the five
sites proportional to the amount of referrals generated in
each area. Thus, more care co-ordinators were interviewed
in areas where greater numbers of referrals for direct
payments had been made. Care co-ordinators were
recruited once they were identified as referring clients onto
direct payments.
In total, 20 care co-ordinators were formally interviewed
individually: ten social workers and ten CPNs. As the evalu-
ation progressed, a number of informal discussions were
held with other care co-ordinators. In addition, a visit was
made to one Community Mental Health Team (CMHT)
where more than ten clients had been referred for direct
payments. Informal discussions were had with a selection of
the care co-ordinators in the team and the researcher
attended their team meeting.The formal interviews covered
a number of topics including their views on the appropri-
ateness of direct payments for their clients, their experience
of referring onto direct payments, any difficulties with the
process and any identified outcomes and benefits.
DIRECT PAYMENT RECIPIENTS
All clients who had been offered direct payments17 by the
end of the National Pilot (July 2003) were invited to take
part in the evaluation. Letters were sent out via the direct
payment support ser vices. In addition, individual care co-
ordinators and local suppor t workers followed up these
letters to invite participation. As with the care co-ordinator
sample, attempts were made to recruit a cross-section of
recipients across the five sites proportional to the numbers
of people on direct payments in the different localities. In
the event, approximately one third of the clients who had
been offered direct payments in each site were
interviewed.
Twenty-two in-depth individual interviews were carried out
with clients and/or a nominated carer18.In addition, one
group interview was conducted with a group of ser vice
users who were collectively using direct payments to access
a creative arts group. Therefore, a total of 27 mental
health service users were interviewed who had been
offered direct payments. Interviews with recipients included:
●a semi-structured interview focusing on the
experience of accessing and receiving direct
payments.These questions were devised on the basis
of the evaluation’s aims and objectives and adapted
from the interview schedules used in two similar
studies (Witcher et al 2000; Ridley and Jones 2002)
●a questionnaire examining the impact on quality of
life resulting from using direct payments.The
categories for these questions were informed by
reference to the Lancashire Quality of Life interview
schedule (Oliver 1991).
Interviews were carried out with clients at various stages of
accessing direct payments.The ser vice user inter views
included two clients who had initially been offered direct
payments but for whom payments had been subsequently
withdrawn. Of these, one client had been offered direct
payments but had been admitted to hospital before they
could be taken up.When discharged, direct payments were
no longer seen as appropriate. The other client had been
offered direct payments but was unable to find a suitable
PA and decided not to take the payment up.
The rest of the interviews were carried out with clients
who were receiving direct payments but at different stages
in this process.Thus, three clients had received payments
but were not currently using them due to difficulties setting
up their support arrangements19.The five clients
interviewed as a group had been in receipt of payments for
about six weeks and another client had been using direct
payments for only two months. The remaining 16
interviewees had been receiving direct payments for
anything between a period of three and 17 months.
17

With respondents’ permission, interviews were tape
recorded and subsequently transcribed or otherwise
extensive notes were taken. Qualitative data were analysed
using a systematic thematic content analysis method.
Quantitative data were analysed using a database
developed in Microsoft Excel and descriptive statistics
produced.
It is important to note that in general the interview data
have been analysed and reported in relation to sample
groups rather than being broken down by local sites. Given
the relatively small base numbers within each of the sample
populations, it was considered that this approach would be
best to ensure both respondents’ and sites’ anonymity.
However, where site-specific information was identified, this
was noted and has been included in the analysis.
In view of the fact that the study was being conducted in
five study sites and involved some NHS staff and users of
mental health services, ethical approval for the study was
sought from a multi-centre research ethics committee
(MREC). Despite the fact that the application for ethical
approval was submitted at the very star t of the study,
delays in processing the application contributed to the
decision to reorder the sequence of interviews. However,
this did not unduly affect the conduct of the research and
ethical approval was subsequently awarded. A study
protocol that incorporated and developed the procedures
outlined in the ethics application was devised and adhered
to within the conduct of the research.
2.5 Ethical Approval
QUANTITATIVE DATA COLLECTION
Two databases were designed to gather information for
the study and sent to staff at the five sites for completion.
The first was designed to collect data in relation to
implementation issues, local structures and progress. The
second was sent out to each direct payments support
agency following the end of the pilot in July 2003. It sought
information on referrals to the scheme and take-up of
direct payments during the pilot period. Background
information was gathered in order to develop a profile20 of
those referred for direct payments during the pilot and of
actual recipients. In addition, information was gathered via
this database on:
●who had referred clients onto direct payments
●date of referral and outcome of referral
i.e. whether the package was agreed or rejected
and whether it was taken up
●if the package had been taken up: a) the number of
hours of the package; b) what the payments were
being used for.
18
2.4 Data Analysis
17 i.e. if a direct payment package had been agreed by this date.
18 Three interviews were carried out with the direct payment recipient
and their nominated carer/significant other. In addition, two interviews
were carried out just with the nominated carer where the direct pay-
ment recipient was not in a position to be interviewed. Whilst there is
not enough data here to specifically comment on the views and
perceptions of carers or significant others, this additional material helped
supplement the data from clients directly.
19 For example, difficulties in recruiting PAs.
20 For example, profiles in relation to gender, age, ethnicity, living
arrangements, CPA level.
21 The intention was to conduct interviews with recipients at the point at
which payments had been agreed and then six months later to
investigate short-term outcomes of receiving direct payments.
22 As previously indicated, the content of this questionnaire was informed
by reference to a standardised Quality of Life assessment tool. It was
then adapted to incorporate questions deemed be potentially relevant
to mental health and direct payments.
23 For example, questions were asked under the categories of leisure and
outside interests, relationships, self-concept and health.

Overall, the study has been successful in relation to meeting
the objectives of the research. Despite this, three main
methodological issues arose during the conduct of the
study concerning the recipient sample, evaluating outcomes
for direct payment recipients and the quantitative data
collection.These are considered in turn.
RECIPIENT SAMPLE
In general, the participant samples recruited to the study
were representative of the range of interests within the
pilot sites and were consistent with the criteria established
for selection. However, the slow rate of take-up of direct
payments within the pilot meant that the potential sample
population of direct payment recipients was relatively small.
Whilst adhering to the procedures established within the
research protocol, time constraints within the study and the
approach taken to recruiting direct payment recipients
undoubtedly limited the numbers of direct payment
recipients who were ultimately interviewed.
Furthermore, the length of time it took to process and set
up direct payment packages, particularly if recipients
employed their own PAs, meant that most recipients only
started using direct payments in the last year of the
National Pilot. On the other hand, the numbers of
respondents were maximised by not specifying that
individuals had to have been in receipt of direct payments
for a set period of time. In conducting the interviews, the
individuals who had been receiving direct payments the
longest were interviewed first.
OUTCOMES FOR DIRECT PAYMENT RECIPIENTS
In the original study design, the intention had been to carry
out a two-stage interview process21 with direct payment
recipients to examine short-term impact and outcomes.
Again, the slow process of implementation meant that it
was not possible to do any significant assessment of
progress ‘before and after’ direct payments. The variety of
stages that individuals were at in relation to setting up and
using their direct payments raised questions about the
validity of any comparisons that might be drawn. As a
consequence, the findings primarily relate to the early
stages of individuals actually getting on and setting up
direct payments, rather than impact or outcomes.
However, in order to gather some preliminary data in
relation to impact, a quality of life questionnaire22 was
devised which explored individuals’ perceptions of the
impact of using direct payments on various aspects of their
life. Recipients were asked whether they thought that the
direct payment was having an impact on these aspects23.
They were given the option of either selecting if it had a
positive or negative impact, if there was no change, or if the
question was not relevant to them. It is important to
highlight that the findings presented in this report
concerning self-reported impact on quality of life relate
only to the 16 clients who had been using direct payments
for at least three months at the time of interview.These
data, alongside other information gleaned from the
semi-structured interviews with both recipients and care
co-ordinators, allowed the identification of perceived
benefits and short-term impact of using direct payments.
Clearly, this signals the need for fur ther longitudinal
research to establish the outcomes for recipients in the
longer term.
QUANTITATIVE DATA COLLECTION
As previously indicated, a database was developed to
gather background information from participating sites
about referrals and about those in receipt of payments.
However, difficulties were encountered with getting hold of
the requested information and ensuring the consistency of
data across sites, reflecting differences in the way
information was recorded and collected within the
participating sites.This was often related to the varying size
of sites. For example, two sites were large counties that
incorporated a number of different local districts each with
their own procedures and systems. It was also linked to
whether the local direct payment support ser vices were
in-house or independent. Overall, this raises questions
about the systems for monitoring direct payments
implementation at the local level; for example, clients’
ethnicity was not routinely recorded. Although it was
possible to collect most of the information required,
where the accuracy of the information was in question or
data were missing these are noted.
Having outlined the methods used within the evaluation,
the following chapter presents the findings on the progress
of implementing direct payments in mental health within
the pilot sites.
19
2.6 Methodological Issues and Study Limitations

20
3.1
Overview of Participating Sites
CHAPTER 3
Progress in
Implementation
This chapter is divided into three main sections.The first
section describes the different sites that participated in the
pilot. Based on a cross-site comparison, section 3.2
outlines various similarities and differences in implementing
direct payments.The third section maps out the progress
in facilitating access to and take-up of direct payments
across all five pilot sites during the pilot period. It details
the numbers and sources of referrals, the outcome of
referrals and the characteristics of direct payment
recipients. It then goes on to give an overview of the
range, usage and level of agreed direct payment packages.
Box 3.1 provides an outline of the five participating sites.
Population figures are taken from the UK Census 2001.
BOX 3.1 PILOT SITE CHARACTERISTICS
Barnet has a population of 314,561 people. It is an Outer
London borough with relatively high ethnic diversity (26%)
including people from Jewish, Chinese, African and
Caribbean communities. Barnet currently has an in-house
Local Authority direct payments support agency.
Hampshire has a population of 1,240,032 people. It is a
large shire county in the south-east of England with a small
ethnic population (approx 1.4%) including Asian, African,
Caribbean and Chinese people. Hampshire has an
independent direct payments support agency
(Southampton Centre for Independent Living). It was the
first Local Authority to develop an independent direct
payments scheme and has a long history of offering direct
payments to people with physical disabilities dating back to
the early 1980’s.
Leicester City has a population of 279,923 people. It is
part of a unitary authority covering an inner city urban area
with relatively high ethnic diversity (24%) including people
from Asian,African and Caribbean background. Leicester
has an independent direct payments support agency
(Mosaic).
Surrey has a population of 1,059,015 people. It is a large
home county with a small ethnic population (2.8%)
including people from Asian,African Caribbean and Asian
communities. Surrey has an independent direct payments
support agency (Surrey Independent Living Council).
Tameside has a population of 213,045. It is a small
metropolitan borough of Greater Manchester, with a mixed
urban and rural community and a 4.1 % minority ethnic
population of mainly South East Asian origin (Indian,
Pakistani and Bangladeshi). It currently has an in-house
Local Authority direct payments support service.

The following sections outline specific similarities and
differences across the participating sites in relation to their
procedures for implementing direct payments in mental
health. In order to preserve site anonymity, the findings
focus on general themes rather than identifying par ticular
sites.
FUNDING OF DIRECT PAYMENT PACKAGES
During the pilot, two sites had put aside a small amount of
funding24 to resource individual direct payment packages
once they had been accepted. In the other three sites,
direct payment packages had to be funded out of the usual
local community care purchasing budget as and when they
were agreed.
All sites applied their own local criteria for eligibility and
determining the level of funding for direct payment
packages. Officially, all sites applied the same criteria as
those used to access directly provided community care
services. Towards the end of the study, all of the sites were
revising their eligibility criteria in accordance with the Fair
Access to Care Services guidelines. In practice, this usually
meant that only clients considered as falling under priority
of need ‘1’ (critical) or ‘2’ (substantial) were being
considered as eligible. However, as might be expected, there
was variation in local and individual interpretation of these
guidelines dependent on a number of factors which will be
considered in later chapters.
VARIATIONS IN FUNDING PACKAGES
Firstly, take-up and use of direct payments depended on the
overall community care budget available to a Local
Authority in relation to the local client population and how
flexible their funding and commissioning arrangements
were25.In one area, direct payments were awarded to
clients who were not currently accessing support services
(apart from a CPN or social worker) or were provided in
addition to what they were currently receiving in-house.
However, in another area, direct payments were primarily
only offered to individuals who wanted to directly change
to direct payments from an externally provided support
agency. The first area may find it difficult to replace an in-
house support service but had sufficient resources to be
able to fund additional ‘unmet needs'. The second area
found it easier to replace services provided by an external
agency, but did not have sufficient resources to meet unmet
needs via direct payments.
Secondly, take-up and use of direct payments also
depended on what services were currently available in the
local area26.For instance, in one area, clients frequently had
to travel long distances to use community or mental health
facilities but the Local Authority did not provide assistance
with transport. As a result, transport was identified as a key
area of need and direct payments were often used to cover
transport costs.
Thirdly, interpretation at the individual practitioner and
Local Authority level shaped the parameters in relation to
what kinds of needs direct payments could be used to
meet or what kind of services payments could be used to
fund. Most notably, this was linked to the boundaries
between ‘social’ care and the need for other services such
as health, leisure and education. Thus, one site had a
number of clients using direct payments for gym
memberships. However, the Local Authority lead in
another site reported that this would not be possible in
their area. Whilst they would fund somebody to be assisted
in going to the gym, they indicated that they would not
fund gym membership as it would not be considered as
‘social’ care.
Variations also existed in the hourly rate that Local
Authorities set for the payment of personal assistants (PAs)
which varied between £6.67 to £8.00 per hour. As we
shall see in later chapters, the availability of PAs could be a
crucial barrier both to the uptake of direct payments and
the success of direct payment packages. In one area, where
a client with multiple and complex needs27 accessed direct
payments, a higher rate of £15.00 an hour was awarded in
order to secure an appropriate PA.
Some sites paid additional amounts for setting up costs,
payroll services and for contingency, crisis or back-up
support where this was assessed as necessary.The
availability of these resources affected how flexible a client’s
support arrangements were and how much support
service users were able to get with managing their direct
payments. In turn, this was linked to how well-resourced
the local direct payment service was and their capacity and
skills in relation to this client group.
21
3.2 Similarities and Differences in Implementation

DIRECT PAYMENTS SUPPORT TEAMS
As previously indicated, three local direct payments support
services were independent from the Local Authority and
were designated as Independent Living Centres (ILCs). The
other two support ser vices were initially set up by an
independent voluntary organisation but, at the time of the
evaluation, were being provided in-house by the Local
Authority28.Both of these Local Authorities were looking
to contract out the service again to an independent
organisation. However, progress in achieving this had been
stalled due to difficulties in finding an appropriate
organisation which could serve a mixed client group.
For the duration of the pilot, all direct payments support
services were funded to pay for an additional part-time
support worker. Three local suppor t services decided to
employ a specialist mental health direct payment support
worker. The other two sites absorbed the additional
money into the service and used it to resource the ser vice
generally i.e. such that all support workers could be generic
and therefore respond to all referrals (including mental
health).
All of the support services had a significant history in
supporting people with physical difficulties using direct
payments. The role of the suppor t agencies varied, as did
the amount of support they could offer potential clients or
recipients. All of the ser vices offered a variety of suppor t
to clients being referred to direct payments. For instance,
assistance could include help with paperwork, advertising
for and recruiting PAs, hosting interviews for PAs, help with
managing money. However, the degree and length of
support offered differed considerably across sites.Thus, two
sites reported that they would like to do more to help
clients recruit PAs but did not have the capacity to do so.
As explored further in Chapter nine, the extent of support
offered to clients at the pre-assessment stage had an
impact on the outcome of referrals and eventual take-up.
In addition, the degree of ongoing support offered to
individuals in setting up and managing their direct payments
had an impact on the success of individual packages
particularly when people employed their own PAs.
22
All sites offered one-to-one support and/or a tailor-made
training package to assist recipients in using direct
payments. One site expected recipients to go through a
specifically designed training course that covered a variety
of issues relating to setting up and running a direct
payment. Support services also offered training,
information and advice to mental health teams, care
co-ordinators and service users. However, the
pro-activeness and level of involvement of direct payments
teams was notably different across sites.This was most
apparent in terms of how early they became involved in
the direct payment referral process, whether they helped
with clients’ needs assessments and how much support
they could offer to both individual care co-ordinators and
service users.
All direct payments support ser vices were trying to
establish arrangements for recipients to access peer
support. However, most sites were having difficulty with
maintaining active peer support groups and were looking
towards alternative ways of providing group support.
One in-house direct payment support agency did have an
active peer support group which some of the new mental
health recipients were beginning to attend.
REFERRAL AND ASSESSMENT PROCEDURES
All five sites indicated that care management and Care
Programme Approach (CPA) systems had been integrated
or were in the process of being integrated.Three sites were
developing self-assessment procedures although these were
still in the process of being implemented. In practice, all
assessments had to be agreed by the care co-ordinator.
However, where self-assessments were star ting to be used
or where the direct payments support agency was
particularly proactive, the direct payments support workers
(or other workers from advocacy or voluntary
organisations) offered assistance to service users in
developing their needs assessments. If accepted, these could
be taken up by the care co-ordinators. These data suggest
that the success of maximising the involvement of service
users in assessing their own needs depends on the
existence of active workers able to offer support at this
stage and an inbuilt flexibility in carrying out assessments.
Likewise, success also depends on ensuring that
assessments are genuinely needs-led rather than service-led.

AGREEING PACKAGES
Sites had a variety of means through which individual direct
payment packages were approved.Again, this reflected how
individual sites agreed any community care package. In two
sites, the senior social services mental health manager
agreed packages. In another site, the senior mental health
social services manager set up a meeting with a ser vice
manager from another care group to agree a package.
One site had a panel with representation across health and
social services which agreed all community care packages in
mental health. In the final site, the decision was devolved to
the local mental health team managers. The two largest
sites29 had a variety of ways of agreeing packages depending
on the area covered.
The remainder of this chapter outlines the progress made
in facilitating access to and take-up of mental health direct
payments within the five sites. In the main, the findings are
presented across the five sites sites. However, where the
analysis suggests important variables, differences and
similarities across sites are noted.
Despite a range of practical, ideological and funding
difficulties, all of the pilot sites were able to make small, but
significant progress towards widening access to direct
payments to mental health service users. A specific target
was developed at the outset of the National Pilot which
aimed to facilitate the take-up of direct payments for up to
ten mental health service users in each local site, thereby
enabling 50 mental health users in total to access direct
payments. Given significant differences in the size of areas
and populations, it became apparent that a more realistic
target was a total of 50 people across sites, regardless of
area. As indicated below, this target was achieved.
Data for this section were gathered from the local direct
payments support agency and, where possible, verified with
the Local Authority. Numbers do not necessarily reflect
national statistics gathered by other bodies such as the SSI
and Department of Health. In addition, direct payments
teams do not necessarily have a specialist knowledge about
how mental health teams work and this may affect how the
information was recorded.
The next section is divided into six sections.The first
section outlines the numbers of referrals and outcome of
referrals during the pilot period (February 2001 – July
2003). Secondly, it identifies the sources and patterns of
referrals. Thirdly, it details some characteristics of direct
payment referrals and recipients in relation to gender, age,
ethnicity and CPA level. The fourth section provides an
overview of the range of uses of direct payments agreed
during the pilot.This includes whether payments were
one-off or ongoing and whether recipients employed a PA.
The fifth section indicates the level of packages that were
agreed and the final section outlines the time taken to
agree individual direct payments.
REFERRALS AND OUTCOMES
In the following tables,‘referred’ includes self referrals,
referrals from care co-ordinators and others.The category
‘refused’ indicates that the direct payment package was
refused once the package had been presented to the panel
or to whoever makes a decision about the application
within the Local Authority. A number of other applications
may have been effectively turned down before this point if,
for example, the care co-ordinator decided that it was not
appropriate or suitable to proceed.The term ‘withdrawn’
signals that the client and/or care co-ordinator did not
pursue the direct payment application.Various reasons for
this are explored in more detail in the next section.The
term ‘pending’ means that the case was still being processed
at 31.7.03 but that the package had not been agreed or
withdrawn.
23
3.3 Progress Across Sites

24
However, caution should be adopted in drawing simple
comparisons and in interpreting these data. Clearly, they
indicate that take-up of direct payments in the pilot sites
were still a very small propor tion (less than 1%) of those
who might be potentially eligible. At the same time, Local
Authorities operate different eligibility criteria with
implications both for service receipt and access to direct
payments.
Ta b le 3.3 illustrates the numbers of referrals and the
outcome of these referrals broken down by site31.Whilst
sites provided accurate figures in accordance with their
local systems for recording information, these systems
differed between sites. For example, it was unclear at what
point a case was recorded as a ‘referral’ and when referrals
were deemed as ‘withdrawn’. The absence of any
‘withdrawn’ referrals in Surrey and the relatively large
number of recorded referrals ‘pending’ was partly due to
differences in how information was recorded. In this
example, most clients who did not proceed to direct
payments were recorded as ‘pending’. Fur ther, it was
unclear whether there were any other cases that were
withdrawn which were not recorded.Therefore, these
figures indicate a very high rate of referrals which
proceeded through to an agreed direct payment package in
Surrey. However, there was a high level of suppor t for
direct payments from the Local Authority and senior
mental health managers in Surrey, and the direct payments
support service acted independently and proactively to
help service users access direct payments. As we shall see
in later chapters, these were two crucial factors in
implementation.The available information suggests that
Surrey did have the highest throughput onto direct
payments both in terms of total numbers and success rate
of referrals.
It is important not to consider these figures as indicators of
success in themselves. These figures need to take into
consideration the overall size of areas as well as the levels
of need and characteristics of the populations ser ved.
Overall, referral rates were relatively consistent across sites
in relation to the size of areas. However, one smaller site
(Tameside) did have a higher rate of referrals in relation to
other sites with a comparable population size.
A total of 158 referrals were made for mental health direct
payments during the duration of the pilot. As table 3.1
illustrates, a total of 64 direct payments were agreed across
all five sites during this period. Of these, six direct
payments were offered but not taken up.
TABLE 3.1
REFERRALS AND OUTCOMES ACROSS PILOT SITES
TOTAL NO. OF CLIENTS
REFERRED 158
REFUSED 11
WITHDRAWN 50
PENDING 33
AGREED 64
TAKEN UP 58
Ta b le 3.2 illustrates the numbers of people who had a
direct payment agreed in relation those who might be
potentially eligible for direct payments within each site.
For this calculation, the numbers of people on the Care
Programme Approach (CPA) have been used as, currently,
mental health service users can only access direct payments
if their needs have been assessed and a care plan
developed under the CPA. Therefore, these figures can be
considered as a proxy indicator of the service user
population who might be eligible for a direct payment30.
The first percentage figure represents the proportion of
people out of the total local population who are on the
CPA (i.e. the potentially eligible service user population).
The second percentage figure represents the proportion of
those on CPA who have had a direct payment agreed
within each site.
The figures give some indication of the differing levels of
mental health need across the five areas. For example, as
would be expected metropolitan areas such as Leicester,
Barnet and Tameside have a higher proportion of people
actually assessed as needing services in relation to their
total population than Surrey and Hampshire, which are
more affluent and southern shire counties.

TABLE 3.2 DIRECT PAYMENTS (DPS) BY CPA POPULATION
TOTAL TOTAL % OF TOTAL NO % OF THOSE
LA SITE POPULATION NO. ON POPULATION OF DPS ON CPA
CPA ON CPA AGREED (31.7.03) USING DPS
BARNET 314,561 4,570 1.45% 6 0.13%
HAMPSHIRE 1,240,032 10,838 0.87% 12 0.11%
LEICESTER 279,923 4,317 1.54% 2 0.05%
SURREY 1,059,015 6,907 0.65% 29 0.42%
TAMESIDE 213,045 2,677 1.26% 15 0.56%
Another way to measure successful implementation would
be in relation to the quality and size of all direct payments
packages. Some sites with higher numbers of agreed direct
payments included a greater proportion of smaller and/or
one-off payments. During the pilot, all sites were recognised
as having achieved small but significant success in relation to
individual packages. Thus whilst Leicester had the lowest
number of clients actually using direct payments, the two
packages taken up were two of the most intensive and
complex packages, involving exceptional circumstances such
as employing a relative as a PA. In addition, Barnet had the
highest number of packages agreed for clients from black
and minority ethnic communities.
WITHDRAWAL AND NON TAKE-UP
Reasons for non take-up were often related to anticipated
and actual difficulties in finding a suitable PA, managing the
money and paperwork, changing circumstances and
changing support arrangements. Other clients who were
using direct payments sometimes experienced difficulties
with setting up their support arrangements through direct
payments, especially recruiting PAs (see Chapter nine for
further discussion).
There were a variety of reasons given for withdrawing
direct payment applications. To look at this in more detail,
data were analysed from one site (Hampshire) that had a
relatively high number of withdrawn cases and was able to
provide information regarding these. Analysis of this small
sample indicated that the decision to withdraw applications
came mostly from clients themselves. For instance, 14
clients decided not to pursue their application either
because they were happy with their current support
arrangements, because they felt that it involved too much
responsibility and paperwork or for other reasons. Other
reasons included moving out of the area and having
difficulties opening a bank account. On the other hand,
four applications were withdrawn because the care
co-ordinator did not support it and three were not
pursued because of illness and/or hospitalisation. One
application was unable to be pursued because the client
was caught between two services.
More generally, despite repeated efforts, Hampshire were
unable to retain an additional mental health-specific
support worker in the direct payment support ser vice
throughout the pilot. This may have had an impact on
direct payment cases being pursued and followed up.
25
TABLE 3.3 REFERRALS AND OUTCOMES BY PILOT SITE
SITE REFERRED REFUSED WITHDRAWN PENDING AGREED TAKEN UP
BARNET 12 0 5 1 6 6
HAMPSHIRE 41 2 21 6 12 10
LEICESTER 16 0 8 6 2 2
SURREY 48 4 0 15 29 27
TAMESIDE 41 5 16 5 15 13

SW
58 (37%)
NK
9 (6%)
S
14 (9%)
O
26 (16%)
CPNs
51 (32%)
FIGURE 3.1
SOURCE OF INITIAL REFERRALS (TOTAL NUMBERS)
SW SOCIAL WORKERS
CPN CPNs
OOTHER
SSELF
NK NOT KNOWN
26
REFERRALS FOR DIRECT PAYMENTS
As might be expected, the majority of referrals came from
the local Community Mental Health Teams (CMHTs).This is
where most care co-ordinators are based and provides the
majority of statutory mental health support. Although in
one site, the majority of referrals came from the local
Rehabilitation Team, on closer inspection it appeared that
this team operated essentially like CMHTs did in other
areas. In one area, members of an Assertive Outreach
Team made six referrals. By the end of the pilot, the
majority of CMHTs had been involved in one or more
direct payment referral. On the other hand, approximately
one third of CMHTs across the sites still had not referred
at all. Whilst most teams had made less than three referrals,
a handful of teams in two areas had generated five or more
referrals. This was often related to a particular care
co-ordinator seeing the benefits of direct payments and
offering it as an option to more than one or two of their
clients. It was also linked to team leaders or senior workers
involved in supervising other care co-ordinators who
regularly raised direct payments as an option. Box 3.2
provides a case study to illustrate these points further.
SOURCE OF INITIAL REFERRALS
Figure 3.1 categorises the source of initial referrals for
direct payments based on the total numbers of people
referred to the direct payments support service.
BOX 3.2
COMMUNITY MENTAL HEALTH TEAM CASE STUDY
This was a large CMHT with over 30 team members including community support workers. Approximately 11 workers had
made referrals for direct payments including six CPNs, four social workers and one occupational therapist. This had resulted
in ten clients in the team being offered direct payments and an additional five pending agreement.A group discussion was
held with CMHT team members about their views and progress on direct payments. A number of factors were identified
as contributing to the progress made.
Firstly, team members were aware that some ring-fenced money had been set aside to help finance direct payment packages
during the pilot.This helped to create a more positive atmosphere, and a greater awareness and knowledge about direct
payments in the team. In addition, the team had lost a number of their community suppor t workers so direct payments were
often seen as being able to fill this gap. Direct payments were often pursued for services that were not available in-house
(such as transport and child care). From starting to see direct payments as a way of getting additional services for clients, more
generally care co-ordinators began to see the benefits of offering direct payments. One care co-ordinator noted that one of
the local consultant psychiatrists had been surprised at how direct payments had seemed to really benefit cer tain clients.
The team have been actively pursuing direct payments for some of their clients and were able to be creative about care
packages. A senior social worker encourages care co-ordinators to think about direct payments in super vision and team
meetings. Direct payments have been put and kept on the team’s agenda. Workers now think about direct payments and
suggest it to other colleagues. This happened partly through word-of-mouth in relation to existing cases as well as through
local involvement in the National Pilot. This has also been aided by creative use of self-assessment tools such as encouraging
and supporting clients to complete a ‘how I see my needs’ form.
After the first few successful referrals, the process became much clearer, so workers knew who does what, who they needed
to speak to and so on. In addition, workers acknowledged that the role of the local independent and active direct payments
support service was crucial. Indeed, a number of workers noted that without their support and involvement throughout the
process they were much less likely to pursue a direct payment for their clients.

This indicates that the majority of referrals came from
social workers (37%) and CPNs (32%) and that there was
a relatively even split between them.
The category of ‘other’ included a variety of people
including relatives32,support workers, advocates, user
involvement workers, an occupational therapist, a clinical
psychologist and workers from other agencies (such as
the Citizens Advice Bureaux).
REFERRALS RESULTING IN AGREEMENT OF
DIRECT PAYMENTS
As figure 3.2 illustrates, the numbers of care co-ordinators
who were involved in processing direct payment
applications resulting in a successful take-up of direct
payments33 was roughly equal between social workers
and CPNs.
This indicates that CPNs were as successful as social
workers in accessing direct payments for clients. Previous
literature suggesting that CPNs were less likely to be
involved in direct payments due to their ‘health’ rather than
social care background was not necessarily borne out in the
pilot. However, there were some significant differences
across sites in relation to the profession of workers
involved in referring and conducting the relevant
assessments for direct payment packages. For example,
there were a high number of referrals from CPNs in one
area that had a high number of agreed packages.
In addition, despite national guidance making it clear that
any professional working as a client’s care co-ordinator
could be involved in doing the assessments and paperwork
necessary to access direct payments, this was interpreted in
different ways at the local level.Thus, in one site the clear
message was given that only social workers could do an
assessment for direct payments. In this site, there were less
referrals made and these tended to come either from
social workers or from clients themselves if they did not
have a social worker. At the same time, many social
workers who referred clients for direct payments were
often involved in highly complex cases in terms of need
and service package.
Successful individual direct payment applications were
tracked back to see which organisation had initially referred.
This is illustrated in figure 3.3 below.The term ‘other’
includes an in-patient unit, day hospital, a relative and one
referral from another local agency.
As would be expected, the majority of successful referrals
came from CMHTs. It is worthy of note that all six
recorded referrals from an Assertive Outreach Team
resulted in successful applications. In addition, in the vast
majority of cases, self-referrals did not usually proceed to a
successful agreement in that only one out of 14
self-referrals resulted in an agreed package.
27
FIGURE 3.2
CO-ORDINATOR INVOLVED IN AGREED DP PACKAGES
CPNs CPNs
SW SOCIAL WORKER
NK NOT KNOWN
SW
26 (41%)
NK
10 (16%)
CPNs
28 (43%)
FIGURE 3.3
SOURCES OF SUCCESSFUL REFERRALS
NUMBER
OF CASES
60
50
40
30
20
10
0
CMHT ASSERTIVE
OUTREACH OTHER NOT KNOWN SELF
51
6421

28
CHARACTERISTICS OF DIRECT PAYMENT REFERRALS
AND RECIPIENTS
As table 3.4 shows, women were more likely both to be
referred for direct payments and more likely to have a
direct payment agreed.
TABLE 3.4 GENDER OF THOSE REFERRED FOR
AND IN RECEIPT OF DIRECT PAYMENTS
GENDER NO. OF NUMBER
OF CLIENT REFERRALS (%) AGREED (%)
MALE 64 (41%) 21 (33%)
FEMALE 94 (59%) 43 (67%)
TOTAL 158 (100%) 64 (100%)
Approximately three fifth of all referrals involved female
clients and they made up two thirds of all agreed packages.
This may reflect the fact that more women use mental
health services generally. It might also relate to women
being considered to be more suitable for direct payments
and/or women being more likely to ask for, and to be
assessed as needing, specific help and support around
practical, domestic and emotional tasks.
TABLE 3.5
ETHNICITY OF DIRECT PAYMENT RECIPIENTS
ETHNICITY NO. OF DPS AGREED %
WHITE BRITISH 51 80%
ASIAN 2 3%
JEWISH 2 3%
NON BRITISH EUROPEAN 1 2%
BLACK BRITISH AFRICAN 1 2%
MIXED HERITAGE 0 (-)
NOT RECORDED 7 11%
TOTAL 64 101%34
As table 3.5 illustrates, there were few people from black
and minority ethnic communities accessing direct payments.
Most of the black and minority ethnic clients were in
Barnet which has a higher than average black and minority
ethnic population. In addition, one African Caribbean client,
not recorded here, was in the process of having a direct
payment package agreed but unfortunately went into
hospital before she could proceed with it. However, once
in hospital her social worker changed and the hospital staff
did not feel that it was appropriate to keep it on her care
plan.There was insufficient continuity in her care to enable
the direct payment to be picked up again when she was in
a position to pursue it.
Therefore, despite the hope that direct payments could
provide more culturally sensitive support arrangements for
mental health service users from black and minority ethnic
communities, there was insufficient evidence from the
National Pilot to be able to offer more than anecdotal
evidence of this possibility. However, an example of direct
payments being used by an Asian client is detailed fur ther
in Chapter four.
Ta b le 3.6 illustrates that the majority of referrals and
take-up involved clients over the age of 25 and under the
age of 60. It may be that younger clients are less likely to be
viewed as being suitable for direct payments. However,
there were two clients aged 18/19 who were offered direct
payments in one site. In addition, the pilot was specifically
aimed at implementing direct payments for adult service
users between the ages of 18 and 65 in accordance with
how services are organised. However, some sites did
generate a number of mental health referrals from clients
over 65. Where information was recorded and given about
these individuals, it has been included in the figures.
TABLE 3.6
AGE OF DIRECT PAYMENT RECIPIENTS
AGES NO. OF DPS AGREED %
UNDER 18 0 -
18-24 2 3%
25-35 14 22%
36-45 16 25%
46-55 14 22%
56-65 6 9%
OVER 65 2 3%
NOT KNOWN 10 16%
TOTAL 64 100%

CPA LEVEL
The Care Programme Approach (CPA) applies to all clients
who receive services from secondar y mental health
services. Eligibility for direct payments should be no
different from eligibility for community care and to access
these clients will have to be on the CPA. There are two
levels of CPA: ‘standard’ and ‘enhanced’ with clients on
‘enhanced’ CPA requiring more intensive and frequent
input than those on the ‘standard’ level from more than
one professional or agency.
In-house direct payment support ser vices were more likely
to record the CPA level of referrals than independent
support services. Therefore the comparison of the CPA
levels of clients referred for direct payments and who were
then subsequently offered direct payments (table 3.7) is
based on data from two sites only (Barnet and Tameside).
TABLE 3.7 CPA LEVEL OF DIRECT PAYMENT
RECIPIENTS FROM TWO SITES
CPA LEVEL NO. OF INITIAL NO. OF DPS
REFERRALS (%) AGREED (%)
STANDARD 17 (32%) 6 (29%)
ENHANCED 33 (62%) 13 (62%)
NOT KNOWN 3 (6%) 2 (9%)
TOTAL 53 (100%) 21 (100%)
Based on this limited information, it appears that once
referred, there is no significant difference between whether
a client is on standard or enhanced CPA as to whether it is
likely to proceed to an agreed package. For both CPA
levels, a third of clients went on to have a direct payment
agreed. In addition, table 3.8 below illustrates the total
number of clients across all five sites who were offered
direct payments by CPA level.
TABLE 3.8
CPA LEVEL OF ALL DIRECT PAYMENT RECIPIENTS
CPA LEVEL NO. OF DPS AGREED %
STANDARD 17 26%
ENHANCED 42 66%
NOT KNOWN 5 8%
TOTAL 64 100%
Although the majority of people with mental health needs
are more likely to fit the criteria for standard CPA, this
demonstrates that more clients on enhanced CPA were
receiving direct payments. This indicates that a number of
clients who had considerably higher assessed needs were
being able to access direct payments during the pilot
suggesting that access was not necessarily restricted to
clients with less severe mental health needs. This may
reflect the different eligibility criteria for community care
services. On the other hand, this may also be due to an
increased focus on clients on enhanced CPA due to
heightened eligibility criteria, funding restrictions and crisis
work.Many clients assessed as being on standard CPA may
not be considered eligible for additional personal and social
support which direct payments could be used to access.
USES OF DIRECT PAYMENTS
This section provides a brief overview of some of the ways
in which direct payments were being used in mental health.
Figure 3.4 illustrates the range of activities or suppor t that
direct payments were agreed for across the pilot sites.
The numbers correspond to how many individual packages
were agreed for that category. A number of packages were
recorded as being agreed for multiple uses.
The most common packages were agreed for social
support.This could encompass a variety of activities which
usually involved employing a personal assistant to provide
additional emotional and practical support outside the
home. However, this also included use of alternative day
centres.Thus one recipient paid for use of a day centre
which was out of the area but provided specific social
support to the service user that they could not get locally.
Domestic support often involved employing someone to
help around the house with cooking, cleaning etc. Personal
Care could include support with eating, getting up and
more intimate emotional support. Transpor t usually
involved payments for taxis or to cover other transpor t
costs in order to get to specific activities which were
difficult to get to by public transport or were out of the
local vicinity (e.g. voluntary work and specific therapeutic
groups, courses or centres)35.
29

Educational support either involved paying for specific
courses fees and/or paying for someone to support the
service user attending. In addition, one client received direct
payments for driving lessons and another for swimming
lessons, although these were counted as transport and
leisure respectively. Using direct payments for ar ts included
paying for a creative arts worker for a group of ser vice
users. Respite involved the ser vice user being able to pay
for a week out of their usual environment in a place of
refuge to give the service user and their usual carers a
break. One client had a direct payment agreed to pay for
respite for one week in every three months. Leisure usually
involved membership of a gym or other leisure facility and
occasionally also included the purchase of specialist
equipment.
Child minding involved paying for additional support for
service users who were experiencing difficulties with child
care due to their mental health.Therapeutic support
included paying for sessions with a private therapist.
Night sits enabled one service user to employ someone to
stay over during the night to enable her to feel safe and to
be able to sleep.
There was an even spread of uses of direct payments
across different sites in terms of the most two most
common categories of usage (i.e. social and domestic).
However, it is notable that there were some marked
differences between sites as regards the other uses of
direct payments.Thus, some sites tended to generate similar
packages. For example, one particular site had the majority
of transport packages and all of the child care and
therapeutic direct payment packages. Another site had a
predominance of leisure packages, specifically gym
30
FIGURE 3.4 USES OF DIRECT PAYMENTS
NUMBER OF PACKAGES
024681012141618
SOCIAL SUPPORT
DOMESTIC
TRANSPORT
LEISURE
PERSONAL CARE
EDUCATION
ARTS
RESPITE
CHILD MINDING
THERAPEUTIC
NIGHT SITS
memberships. This is likely to be related to local
interpretation and decision-making about what direct
payments can be used for, to budgetary priorities and
considerations and to what is (or is not) provided or
available locally.Thus, the site with a substantial number of
direct payments for transport was one of the larger Local
Authorities that encompassed rural areas and where
transport was often seen as a crucial issue. Furthermore,
there was some evidence that where a precedent had
been set in relation to direct payment use that this
prompted further referrals along similar lines. Thus, in one
site, following their first direct payment recipient who used
direct payments to use the local gym, a number of referrals
were made for similar leisure activities.
Ta b le 3.9 below illustrates the number of packages that
were agreed and taken up in relation to whether they were
ongoing or one-off payments.
TABLE 3.9 TYPE OF DIRECT PAYMENT
TYPE OF DP NO. OF RECIPIENTS %
ONGOING 48 83%
ONE OFF 10 17%
TOTAL 58 100%

LEVEL OF PACKAGES AGREED
Not all direct payment packages were calculated on an
hourly rate as this depended upon what the direct payment
was agreed for. Therefore about half of the packages that
were agreed were not recorded at an hourly rate.
Packages that were agreed at an hourly rate tended to be
those packages where a client was employing a PA.
Moreover, there were some cases where a client may not
have decided to employ a PA (or was unable to) and
elected to meet their needs in other ways. This is
illustrated in table 3.11.
TABLE 3.11 LEVEL OF PACKAGES AGREED
NO. OF HOURS NO. OF DPS AGREED %
0-4 6 9%
5-10 13 20%
11-15 4 6%
16-20 3 5%
20-25 2 3%
26-30 4 6%
30+ 2 3%
N/A 30 47%
TOTAL 64 99%
The majority of direct payment packages were less than ten
hours per week and the most common was between five
and ten hours. Packages that were not recorded at an
hourly rate (N/A) tended to be for lesser amounts for
accessing transport and leisure facilities. However, they
could also pay for other costs such as paying for respite and
for attending alternative day centres.The two packages that
were agreed at more than 30 hours involved clients with
additional and complex physical and mental health needs.
Thus one client with a diagnosis of schizophrenia and early
onset dementia was able to purchase a live-in PA organised
by their family/carers.
31
The majority of payments were for ongoing support
arrangements. For example, this included payments for
ongoing transport costs and monthly payments to leisure
facilities as well as payments for hourly support and
assistance. One-off payments included things like payments
of educational course fees, membership costs of leisure
facilities, respite, and purchase of equipment.
In terms of the Independent Living philosophy which
underpins direct payments, payments should be agreed for
‘needs’ rather than ‘ser vices’ and the direct payment
recipient should be able to decide how they want to meet
these needs. However, in practice, what payments would be
used for tended to be agreed in advance.Thus, it should be
up to the individual whether they wish to employ a worker
or workers with their payments. Table 3.10 illustrates the
number of recipients who took up direct payments and
were recorded as having used payments to employ any
workers or personal assistants (PAs).
TABLE 3.10 NUMBERS OF RECIPIENTS EMPLOYING PAS
EMPLOYING PAS NO. OF RECIPIENTS %
PAS 29 50%
NON PAS 19 33%
NOT KNOWN 10 17%
TOTAL 58 100%
At least half of all of the 58 clients using direct payments
were employing one or more PAs. However, there were
some distinct differences across sites in relation to
employing workers. Two sites only had packages agreed
where PAs were employed. In one of these sites, this was
primarily because direct payments were closely tied with a
direct transfer of an externally provided support worker
service to a system of PAs funded by direct payments.
Other sites that were financially able to respond to needs
unmet within existing services were more flexible about
using direct payments in other ways. In Surrey, which had
27 clients on direct payments, over half were using direct
payments to purchase non-PA services such as transpor t,
therapy sessions, educational courses and leisure activities.

32
The majority of direct payment packages took less than
two months to agree but this was highly dependent on
what direct payments were being agreed for. For example,
packages for more straightforward costs such as gym
membership and transpor t or for one-off payments were
often agreed quicker. In one site, such packages were often
agreed in less than a month. For instance, in this area, five
packages took one month, three took two weeks and four
took only a week to be agreed. In keeping with this, more
complex packages took longer to agree and, two packages
were recorded as taking over ten months to be agreed. In
addition, the referrals where this information was not
recorded were more likely to be cases that took longer to
agree35a.
This chapter has given an overview of progress in referrals
and take-up of direct payments during the pilot. The
following chapter explores in more detail how direct
payments have been used in practice at the individual level
based on interviews with direct payment recipients
themselves.
24 In one site this amounted to £26,000 per year; in the other £30,000
was put aside.
25 i.e. whether funding for services was tied up in contracts or services
were spot purchased.
26 For example, ser vices provided in the voluntary sector, the availability
of community support workers, transport etc.
27 This client had mental health needs and a learning difficulty as well as
language and cultural needs.
28 In both cases, the independent organisation was not in a strong enough
position as an organisation to offer the level of support necessary to
fulfil the requirements of the Local Authority.
29 i.e. the two county sites ser ving populations of over one million people.
30 CPA figures were taken from the latest information that Local
Authorities provided during 2003. However, the specific date at which
these figures were actually collected by the Local Authority may vary
slightly between sites.
31 These figures come from the recording systems of the local direct
payment support agencies and therefore may not be entirely consistent
across sites.Thus, for example, some sites may log a referral at a
different stage of an initial enquiry.
32 Such as wife, husband or mother.
33 Whether or not the care co-ordinator made the initial referral.
34 Totals may not add up to 100% because of rounding off.
35 In a survey in the US, mental health service users rated assistance with
transport as being the most important potential benefit of having
consumer directed personal assistance services (Pita et al 2001).
35a In cases that were more protracted and complex, it was harder to
calculate the time taken for the package to have been agreed from
the initial referral.
TIME TAKEN TO AGREE DIRECT PAYMENTS
The time taken to agree individual direct payments
packages was based on the difference between the date
recorded on the initial referral to the local direct payment
support service and the date a direct payment package was
agreed.These data are presented in table 3.12. However,
this does not reflect the additional time that may be taken
before a referral is actually made. The length of time taken
was due to a number of factors including care
co-ordinators needing to do the relevant paperwork and
their level of understanding of the process. In addition,
doing needs assessments could be a lengthy process,
particularly where the service user is assessed as having
complex and fluctuating needs resulting in multi-disciplinary
involvement. It also depended on service users themselves
who may have taken a while to decide whether they
wanted to pursue direct payments or not.
TABLE 3.12 TIME TAKEN TO AGREE DIRECT PAYMENTS
TIME TAKEN NO. AGREED %
0-2 MONTHS 24 38%
2-4 MONTHS 14 22%
4-6 MONTHS 9 14%
6-8 MONTHS 3 5%
OVER 8 MONTHS 3 5%
NOT RECORDED 11 17%
TOTAL 64 101%

As previously indicated, while the number of clients using
direct payments remained low, there was still a great
diversity in the ways payments were being used. A
substantial proportion of recipients employed their own
PAs. Workers employed by service users were called PAs,
helpers, carers, workers, cleaners and so on, dependent in
part on what they were being employed to do and the
term with which recipients felt most comfortable. Some
recipients employed different PAs for specific roles and
jobs36.Recipients were able to use their direct payments to
do a variety of activities and tasks and these could change
over time according to needs. As one recipient described:
I do anything I want with it. I get exhausted sometimes,
so she helps me with housework and we go out
shopping for food… If I get a letter off anyone and if
it’s official, she will sort it out…she comes to doctor’s
appointments with me… I go and see a friend, we go
for a walk, you know, different things… If the weather
is nice we might go to [a country park] and we always
have dinner out, because I have got an eating disorder,
so it’s like that’s part of the care plan, going out for
something to eat.
Recipients often used direct payments to employ a PA for
‘befriending’ purposes, going out to places they had not
been to before or to accompany them if they found it
difficult to go somewhere alone or to go shopping with
them.
There are some things that I couldn’t do, like I can’t go
in to a busy shopping centre… and shop, although I
would like to, but if I have got somebody with me, then
I will do it, I don’t like to go to crowded places on my
own. You see it’s just not so much for the company, but
I just feel scared of what might happen to me, and I
have had quite a lot of panic attacks and agoraphobia
as well. So I use it for shopping and to do a new course.
Two recipients saved up hours that they were allocated
each week to go out for whole days.This meant that they
could go to places that would take much longer to get to
and that they could take their time. Thus, one client had
gone to London for the day and another had gone to the
seaside over the summer. Furthermore, one client was able
to use her direct payments for respite.
Any surplus I save up for respite. So I have had a break
for a week to a special mental health residential place –
it’s a break for me and my mum who’s my main carer –
it gives her a break. It’s a different environment and
gives me a complete break.
33
4.1
Recipient Use of Direct Payments
CHAPTER 4
Using Direct
Payments
The last chapter gave an overview of uses made of direct
payments across all of the participating sites. Based on the
interviews with recipients, the first section of this chapter
considers in greater detail how direct payments were being
used. Following this, section 4.2 presents a series of case
studies to provide further illustration.

Direct payments have also been used for a variety of
leisure activities. One recipient employed a PA to go to
museums and art galleries with her. Other leisure activities
people were able to do because of support they got from
their PA included going walking in the countr yside,
swimming and going to the gym.
I decided that I wanted to go walking to get exercise to
get my weight down, also go swimming because I enjoy
swimming and to go food shopping which frees [my
husband] up a lot because he could do things at home
while I am doing food shopping with one of the helpers.
Walking, yeah I often tell them where I would like to go
for a walk and they will take me in their car and take
the dog along with us.
Some recipients did not need someone to go with them
but did need a direct payment to pay for leisure
membership and transpor t to get there. For one client
who had a diagnosis of an eating disorder, this helped to
provide a social outlet, to improve general fitness and to
alleviate clinical difficulties around their eating, self-esteem
and weight. Another recipient used the gym to alleviate
weight gain (due to medication) and for improving
self-esteem and general health. One Asian recipient was
also able get direct payments to pay towards a TV channel
specialising in Asian films and programmes.
Some clients were using direct payments for support to get
to the places where they were involved in voluntary work
out of their local area.Two recipients used direct payments
specifically to pay for taxi fares. One recipient used direct
payments for a taxi to and from a church-run organisation
that worked with people with mental health needs and
learning difficulties where she helped to run a day centre
and to give emotional and religious support to members.
Direct payments also paid for this client to have driving
lessons so in the future she would be able to drive there by
herself. Another recipient used direct payments to travel to
and from an animal sanctuary in the countr y where he did
voluntary work cleaning out the hutches of small animals.
Recipients also were using direct payments for educational
purposes, for instance attending courses.They either used
the money to pay for the course fees, for transport, and/or
for company and support in attending the course.
34
I didn’t have to pay for doing the course, because I was
on income support….but so I can be taken there and
[my PA] comes with me. So I can be brought home, so I
don’t have to worry about parking in the dark, because it
really used to freak me out to park there and then find
myself into the room, then to do it all in reverse. She
doesn’t always come with me now, because I have made
friends there and I know people then I sort of meet them
in the car park, but it enabled me to actually start it.
A number of recipients used direct payments for domestic
and household support. This involved employing a PA to
do things such as helping with cleaning, cooking and
preparing food, budgeting, making phone calls, assistance
with opening and answering mail. In addition, several
recipients had employed a gardener to help maintain their
garden.Thus, in one example, where the service user rarely
went out, a gardener was employed on a temporary basis
to clear the garden which was overgrown and dangerous.
This enabled the recipient to actually go and sit outside.
An older client who had a diagnosis of dementia as well as
other mental health needs used direct payments to employ
a live-in PA. A member of her family assisted with the
management of the payment and employed a PA on her
behalf to do domestic jobs, personal care, cooking, cleaning,
washing and getting her out of bed etc. This enabled her to
stay in her own home rather than have to live in a nursing
home.
A number of recipients also used their PAs to accompany
them to hospital and other important appointments. In
addition, one client was offered direct payments to support
her to care for her children during a mental health crisis.
Unfortunately, they could not find a suitable PA and this
was not taken up.

The following sections look at particular examples of
support arrangements that individual clients have
developed through direct payments.
NIGHT SITS
One client used direct payments to employ someone to
stay with her during the night. She employed a PA to do
two waking night sits per week when she felt she needed it
most (for example at weekends).This client had ongoing
serious and escalating self-harm, difficulties sleeping and
would often feel particularly unsafe and vulnerable at night.
The PA would either help out with household chores while
the client slept, or sit up with her if she couldn’t sleep.This
enabled her to sleep and has helped reduce the severity
and amount of self-harm.
It’s very flexible. She comes in the evening and we have a
drink and chat and take the dog for a walk sometimes
and then I’ll go to bed at whatever time and she might
do some cleaning for me or whatever…then she sits up
all night and when I get up during the night, I have got
someone to talk to. That just gives me a chance to get
some sleep, because I don’t sleep very well, and I self-
harm quite a lot…Just knowing that somebody is going
to come in and spend the night and it gives me a bit of a
break, somebody to talk to and I know I can phone her
up too.
CULTURALLY SENSITIVE SUPPORT
A South East Asian family used direct payments to employ a
PA to help support a young man with complex needs. He
needed to have another Asian worker from a similar
background and culture to whom he could relate. He was
extremely isolated and slept irregularly. Social services had
been unable to provide him with an Asian social worker or
support worker and he could not relate to mental health
services. His mother employed an Asian PA and a cleaner
on his behalf. The PA was employed to develop a
relationship with him and to facilitate greater social contact.
Because of the nature of the young man’s support and the
necessity of finding a suitable PA with specific cultural,
language and mental health skills, it was agreed to pay a
higher hourly rate than usual. The mother guides the PA
and facilitates communication between the PA and the client
and helps him to decide what he would like the PA to do
with him before s/he arrives. She repor ted that her son is
slowly beginning to relate to the new worker.
35
4.2
Case Studies
We have been asking for over two years for an Asian
social worker and social services haven’t helped us. We
just want Asian people who can give a service to him…
We didn’t have anyone coming round no visitors. He
doesn’t sleep at night and is awake during the day… The
PA just comes and talks to [him] and tries to go out with
him. It takes so long just starting to say ‘hello’. Before she
comes I ask him what he’d like her to do and then I tell
her when she comes… whether it’s to get some shopping
in or whatever… It’s like I’m helping her to help him
helping people to communicate with him.They also need
to know that they need to be careful
e.g. not to wake him up when he’s sleeping.
EMPLOYING RELATIVES
Another client employs her mother as a PA for a variety of
social, personal, and domestic support37.In this instance, it
was agreed that the client’s mother was the best person to
provide the intensive support this par ticular client needed
and was someone whom the client trusted and accepted:
I don’t have to tell mother what to do, because she
knows what to do, she knows about my medications, she
is always aware of my appointments, and also the care
involved with my daughter. Also, she recognises the nature
of this illness so she can see when I am becoming ill. If
my mother says I am going high, she will go and make an
appointment and seek further help for me before it
escalates…. She takes me out and encourages me to do
things and be amongst people.

USING DIRECT PAYMENTS COLLECTIVELY
Finally, a group of five clients were using direct payments to
attend a creative arts group. The group employs two
trained artists who work with a local mental health ar ts-
based charitable organisation. The artists work alongside the
individuals providing ideas and motivating them to explore
their own creativity, and helping them turn ideas into reality.
All group members live in a rural area on the border of
two counties, an area which is quite cut-off and not well-
served by services or local transpor t. It is really impor tant
to the individuals that the group is local and within walking
distance. The group was formed in a local Community
Centre and prior to direct payments, the group had to
constantly fundraise to just to keep it going. However, this
was causing the group considerable anxiety and affected
morale. They shared a care co-ordinator (a CPN) who had
heard about direct payments and suggested it as an option
for the group, who responded enthusiastically. The CPN
knew how important the group was for its members and
pursued it for them. The group recognised that getting
direct payments was very much dependent on their having
had a supportive care co-ordinator. Each client gets an
individual payment which they then pay to the creative
response artists.
Since getting funding from direct payments, group members
reported that their morale has significantly improved. They
still fundraise but this contributes towards exhibitions and
other developments of the group38.It would have been
impossible for each individual to get the input of trained
artists alone. In getting direct payments, not only has each
individual been able to access support with their creative
art, but also the payments have facilitated the development
of an environment where clients can benefit as a group
from each other.
36
DIRECT PAYMENTS FOR HEALTH?
Whilst it is difficult particularly in mental health to separate
out what is a ‘health’ need and a ‘social’ need, no client had
been specifically offered direct payments for any health-
related services. However, a small number of clients had
been able to use back payments which had accrued39 for
time-limited sessions of alternative therapies such as
reflexology and counselling. However, a number of
recipients expressed an interest in purchasing other
health-related treatments via direct payments.
One recipient said that she was unable to get
psychotherapy on the NHS because it was not seen to be
suitable or appropriate because of her diagnosis. However,
she felt that she would benefit from long-term
psychotherapy and queried whether this would be possible
via direct payments. In another example, an Asian man
expressed a desire to have Ayurvedic health treatments40
for both his physical and mental health difficulties. He was
dissatisfied with the treatments he had received in hospital
and through western medicine and wanted to be treated at
home. In addition, the members of the creative arts group
(discussed previously) were developing ideas about other
ways of using direct payments collectively, for example for
aromatherapy and massage.
The following chapter explores participants’ views of the
benefits of direct payments.
36 Such as for cleaning/domestic help and social support.
37 Such as shopping, helping her keep appointments and general
support etc.
38 e.g. the group now has a separate drop-in which continues on a
voluntary basis.
39 This was because the payments took a while to come through.
40 A long established natural health treatment developed in South India.

All 16 clients were asked if they thought that direct
payments had had a positive, negative or no impact on
various aspects of their lives. They could also indicate if
the question was not relevant to them, either because the
direct payment was not intended to have any impact in
this area of their life or if the question itself was irrelevant41.
Responses to the questions are presented in figure 5.1
overleaf.
The first issue to note was the lack of reported negative
impact. This may be because recipients were generally
satisfied with receiving direct payments42.
Bearing this in mind, the following is a brief overview of
these findings. Direct payments seemed to have the most
significant impact in terms of firstly increasing recipients’
access to and enjoyment of outside activities and, secondly,
in improving recipients’ feelings about themselves in relation
to the world around them. Whilst using direct payments
had some impact on improving and facilitating personal and
social relationships, this was less marked.
For example, 14 people thought that direct payments had
had both a positive impact on the amount of time spend
on leisure and the degree of pleasure they got out of these
activities. Such activities included swimming, going to the
gym, shopping, socialising, going to a museum or art gallery,
days out to places they had not been to before, walking,
doing courses and so on. In addition, the direct payments
used to pay for transport helped some people to do
voluntary work. Only two people responded either that
direct payments had not had any impact or that the
question was not relevant.
The most significant positive response was in relation to
recipients’ reported feelings of self-wor th where only one
person felt that this had not improved. In addition, the vast
majority of respondents felt that direct payments had
increased their independence, that they had more control
and power over their life and environment and that it had
had a positive impact on their mental health in general.
Whilst 11 people reported that direct payments had
increased their ability to make decisions about their life, five
people thought that this remained unchanged.
37
5.1
Self-Reported Impact on Quality of Life
CHAPTER 5
Understanding
the Benefits
of Direct
Payments in
Mental Health
The vast majority of research across different care groups
identified a wide range of benefits of direct payments (e.g.
Glenninning et al 2000c; Morris 1993; Zarb and Naidash
1994; Kestenbaum 1996; Hasler 2003). Due to relatively
slow take-up, Ridley and Jones (2002) argued that the
benefits of direct payments for mental health service users
have yet to be demonstrated. As previously highlighted, the
majority of mental health direct payments recipients only
started accessing direct payments in the last year of the
pilot.Therefore, this evaluation is only able to report on
relatively short-term and early reported benefits. However,
in qualitative terms, recipients identified significant benefits.
The findings here draw on interviews with 16 clients who
had been actively using direct payments for three months or
more. Of these, the longest a client had been receiving
direct payments was 17 months while the average length of
time was eight and a half months.
The first section of this chapter presents an analysis of the
quality of life questionnaires that recipients completed.
Following this, a more in-depth analysis of perceived benefits
is presented which draws on the semi-structured inter views
with recipients, carers and care co-ordinators. Unless
otherwise specified, all quotes in this chapter are from
mental health direct payment recipients.

In general, most recipients felt that direct payments had had
a positive impact on how well they got on with people.
The perceived impact on generating more close friendships
and improving already existing relationships was less
significant. Many of the people who reported direct
payments as helping to increase the number of friends they
had, related this to relationships they developed with their
PAs which, in itself, amounted to a growth in their
friendship networks. Thus, where recipients were not using
direct payments to employ PAs, this was less marked.
Of note, only two people reported that using direct
payments was having a positive impact on their relationship
with their partners, wife, husband etc. This was par tly due
to the fact that nine of the respondents did not have a
significant intimate relationship and therefore the question
was inappropriate. Four people felt that a direct payment
was not having any impact. One person felt that direct
payments had had a negative impact on their relationship
because their husband had to do a lot of the paperwork
and this was exerting extra stress and pressure on their
relationship.
38
Recipients were also asked if a direct payment was having
any impact on their being able to turn to someone for help
if needed43.Many recipients indicated that this depended on
the sort of help being referred to. Most recipients who
employed PAs felt that they could call upon them to help
them with ‘everyday’ tasks such as accompanying them to
hospital appointments. However, for help with more
significant mental health needs and emotional support,
recipients tended to call on those people they had
previously turned to before receiving direct payments.This
was usually their care co-ordinator, family members, carers
or significant others. One person indicated that direct
payments had a small but notable negative effect in this
regard. This person reported feeling unable to turn to their
PA for help in the same way they had been able to with
their support worker before direct payments. They
subsequently saw their social worker more often. However,
this was a minority experience.
These findings were explored in more detail during the
accompanying interviews and are discussed in the next
section.
FIGURE 5.1 SELF REPORTED IMPACT ON ‘QUALITY OF LIFE’
NUMBER OF RECIPIENTS
14 7101316
LEISURE/OUTSIDE INTERESTS
GETTING ON WITH PEOPLE
NUMBER OF FRIENDS
CONTACT WITH FRIENDS
CONTACT WITH RELATIVES
INTIMATE RELATIONSHIPS
SELF WORTH
INDEPENDENCE
POWER AND CONTROL
DECISION MAKING
MENTAL HEALTH
POSITIVE IMPACT
NO IMPACT/IRRELEVANT
NEGATIVE IMPACT

As suggested in the previous section, the benefits associated
with using direct payments were highly dependent on what
the payments were being used for. Direct payments were
used to help develop personal contact, reduce isolation, and
increase social networks and open up wider opportunities.
In addition, direct payments provided people with practical
support which enabled recipients to do the kind of
activities they wished to do, in the way they wished to do
them. As one recipient commented:
I think it’s a coming together in a logical way of what I
was trying to do on my own and struggling to do on my
own…all these obstacles are now going, so I am getting
a clearer way forward, it’s meant a lot to me.
This demonstrates that when direct payments worked for
people with mental health needs, they have similar benefits
to those reported in other care groups (e.g. Kestenbaum
1996; Halliwell and Glendinning 1998; Glendinning et al
2000c; Morris 1993; Stainton and Boyce 2002; Zarb and
Naidash 1994).
The following sections break down perceived benefits
under three key headings relating to individual personal
change, ability to engage in the social world and impact on
service usage44.
Personal Change
Var ious participants highlighted the extent of personal
change as a result of using direct payments to get the help
they needed and wanted. As one recipient’s husband
commented:
It has, it made a huge difference to her…Even the [PAs]
commented after some time how much she’d changed,
just in her outlook and the way she looked, how she was
talking to them. It was kind of like an awakening.. She
has just changed in so many ways because of the help
that she now gets. (Husband)
PERSONAL AUTONOMY AND CONTROL
Greater independence, enhanced personal autonomy,
choice and control over one’s own life are frequently
reported benefits of direct payments in previous literature
across care groups (Glendinning et al 2000c; Carmichael
and Brown 2002). Illustrative of this, one care co-ordinator
reflected:
Direct payments have helped because she can feel
more empowered that she is in control of things. She has
become a victim of services over the years, she has
become very institutionalised, dependent and that was
what we needed to look at. So I think direct payments
has given her choices, power and control, all the things
that she has not had, she has now got.
(Care co-ordinator)
In particular, support developed through direct payments
could help recipients become more independent from their
family who may be too over-protective:
I used to go places with my daughter and although
she’s great, but she can be stifling at times…it inhibits
me…they are very protective… it doesn’t help me
because I think they used to decide and sometimes I
don’t want to go there….Whereas having a PA I can say
‘I want to go to London next Saturday, can you come
with me?’ This gives you that bit of independence that
you can go and do something, all right you are taking
somebody with you, but it’s on a different relationship,
you know the dynamics are different and you’re the one
that is in control because so it’s like being on my own in
a way having that freedom.
Greater independence can relieve a sense of guilt that
service users often experienced when having to call upon
unpaid carers to suppor t them. Thus, direct payments often
allowed clients to use their payments to secure support
that they previously had to rely on the goodwill of others
to provide.
It’s given me a lot more control over what I do and given
me more independence from my family so don’t rely on
them as much and just knowing that I’ve got someone
to support me during the day, it means I can do some of
the things I want to do. It’s made things a lot easier for
me, things usually my mum would have done with me. I
can do a lot more leisure activities and actually have a
social life.
39
5.2 Identifying the Benefits of Direct Payments

Furthermore, direct payments sometimes formalised
already existing caring relationships which could be under
considerable strain because of the lack of financial
compensation.
I don’t feel so guilty about calling upon my mother to
help out because I know she is being paid and that my
mother can come out to me, because she is being paid
direct payments and isn’t doing the other job that she
was doing before.
SELF-ESTEEM AND ASSERTIVENESS
Many recipients noted that receiving and using direct
payments had significantly increased their confidence and
self-esteem. As one commented:
I think it has made me be more positive about myself,
instead of having negative thoughts all the time, because I
suffer from low self-esteem and it’s giving me my
confidence back.
In addition, using direct payments often had a positive
effect on clients’ assertiveness:
It’s taught me an awful lot, things that I haven’t realised
in my life before about myself and not being assertive
enough and not saying what I want. I think that’s part of
what led me to having mental health problems, because
my life felt totally out of control ... A lot of my illness has
been about not having any self-esteem and not being
able to exert any control over my life and going with the
flow as it were or being dragged along by the current.
So in a way, although I don’t know if it’s intended to be
like that, but it gives you back control and you suddenly
realise, ‘yeah I have got a right to be in control of my life,
I’m not going to let other people tell me what to do or
control my life’.
Growing assertiveness could lead to a greater ability to
negotiate relationships where clients feel more equal and
more in control.
40
HOPE AND OPTIMISM
A consistent theme to emerge from the client interviews
was that direct payments helped increase their motivation
and gave them a sense of purpose and optimism about
their life. The experience provided encouragement,
challenge, and a sense of hope in being able to pursue
some goals in life that mattered to them. Recipients talked
about it giving them something ‘to aim for’, ‘to look forward
to’ and ‘to get up for’:
Direct payments has given me a boost, a little bit of a
boost along that way, it’s really been positive, it really has.
I enjoy it, it gives me a sense of purpose and I feel good
about myself, feeling like I’m not completely useless, that I
do something.
In addition, managing direct payments itself could give
recipients a sense of achievement:
Also for me it was the challenge of it – giving you
something to strive for, to succeed, to improve my quality
of life and it’s an added bonus taking on the role of an
employer, a sense of satisfaction, reward, a sense of
achievement, stuff like that, something to challenge me
and push me forward cos I’ve never done anything like
that before.
TRUST AND RESPONSIBILITY
Workers in par ticular identified responsibility as a key
benefit of using direct payments. Where support becomes
the client’s responsibility they are more likely to assume
responsibility over its success and/or failure:
I still feel optimistic about it all really – the control and
empowerment it can give to service users and about
gaining greater responsibility. Often in mental health it’s
hard to stop offering something and if things go wrong
it’s easy to blame someone else. With direct payments
people have to assume more responsibility over getting it
right. (Care co-ordinator)
In some cases, care co-ordinators noted clients becoming
less dependent on services:
I don't think she is quite as dependent on the service as
she was, say a year ago. So if she has got a problem,
she's looking at well ‘what can I do about it?’ She is kind
of not ringing me so much anymore. So she is not as
dependent. (Care co-ordinator)

In addition, care co-ordinators noted that trusting people
with the responsibility of managing direct payments could
play an important par t in their being able to respect clients
as worthy responsible adults worthy of trust and dignity in
being able to make decisions.This could have an important
side-effect of improving the relationship between the care
co-ordinator and the client and gave the worker a greater
sense that they are facilitating more empowering ways of
working:
It’s like treating people with respect and dignity as an
adult not as a baby… Also the trust – it was indicative
of the trust we put in her, that’s really important to feel
that you’re trusted, like she’s been honoured and she’s
living up to that honouring.’ (Care co-ordinator)
Clients often told they can’t do things and are criticised.
Direct payments helps make it ok to actually make
demands. It also shows that clients are not stupid. It has
a really different feel to it, actually being able to say ‘this
is what I would like’. (Care co-ordinator)
Clients often recognised and appreciated this increased
level of trust being placed in them:
It’s good that they trust me – to get the receipts and all
that.That’s very important to me.
Social Inclusion and Participation
Direct payments enabled clients to purchase the support or
assistance they needed to be able to play a greater part in
their ‘social world’ and contribute to their community. This
included participating in educational, leisure and creative
activities. Direct payment recipients often noted how direct
payments had enabled them to ‘do more’ in the world:
It gets me out and about more, I can choose where I
want to go. Now I can go places I couldn’t have gone to
before.
Before direct payments she would be in the house not
doing anything really other than the necessary.When
direct payments came in she has been going out nearly
every day of the week…it has been a huge benefit to
her, she is doing a lot more, so she has just changed in so
many ways because of the help that she now gets. (Carer)
In some cases it also enabled clients to access paid or
unpaid work. One client specifically referred to the support
she purchased through direct payments as being like a
‘security blanket’ giving her specific support in the home
enabling her to go back into paid work.
Other evaluations of direct payments have concluded that
direct payments frequently enable disabled people to
participate in activities and pursuits in the community which
many non-disabled people take for granted. In turn, this
promotes social inclusion and participation and facilitates
clients living what they saw as a ‘normal life’ (Witcher et al
2000; Carmichael and Brown 2002). What is important is
not simply about inclusion in society but more about taking
an active part in communities and activities that a person
would like to be part of, in the way that they choose:
I felt excluded from everything, because I had no routine
really to my life, whereas having direct payments and
having somebody come everyday started to give me
routine, because I always looked forward to that, because
I know that somebody was coming. I suddenly felt part
of things again rather than being excluded, rather than
being in my own little bubble and I wasn’t really part of
anything, that’s how I used to feel.
DE-STIGMATISING ACTIVITIES
Using mental health services over a long period of time can
erode people’s sense of self-worth so people are viewed
and see themselves as synonymous with their mental health
diagnosis. This can result in being seen solely as someone
with mental health problems or a ‘mental illness’ rather than
as a person with mental health needs amongst other facets
of their life. Thus, in many instances direct payments
enabled clients to take part in activities which were
non-stigmatising:
I try to find more things in the community and get away
from mental health for a bit and into more everyday life.
I don’t want to be stuck in the mental health system
and think this is all there is, that’s all I am worth, I am
not worthy of interesting hobbies, like anyone else. I am
an individual, but I am not treated as an individual, I am
treated as a mental health case.
41

Clients can too readily feel pathologised within the mental
health system and using direct payments enabled some
recipients to feel that their needs and feelings were
respected in their own right without being seen as part of
an ‘illness’:
It’s enabled me to do normal things, you know not doing
things just in the mental health system with other
mental health people so I can go down the pub or go
shopping in another town or whatever. It’s important to
be able to do things not just with other people in the
mental health system so you’re not just mixing with
other people with psychiatric problems all the time.You
can talk about ordinary, little things with other people
and get things into perspective a bit more. Things get
analysed as part of your mental health problems all the
time, you know, like if you’re feeling good one day then
it’s cos you’re going high or whatever. Now if I’m feeling
good it’s just ‘oh you’re in a good mood today!’
Care co-ordinators recognised these benefits especially in
relation to ‘normalisation’ and moving away from being
dependent on mental health services for suppor t:
The support, I suppose for her, it's normalised a lot. It's
kind of like she was going to the dietician for managing
her weight, well now she has joined Weight Watchers.
There’s certain things where she would have used
hospital services and now she's well ‘OK, I could actually
do this at Weight Watchers, I don't really need to go to a
hospital dietician’. So she's kind of bringing herself out of
services, which I think is a really good positive move for
her because that's where she's been stuck. It's like those
benefits have had a knock-on effect. So I think it's had a
shift of thinking. (Care Co-ordinator)
In addition, this can have an effect on how clients are
viewed by others. For instance, one recipient noted that
since getting direct payments to enable her to do voluntary
work in a local community centre, her parents seemed to
respect her more and that she felt like she had more of a
valued role in the world.
42
LESSENING SOCIAL ISOLATION
A crucial element of these benefits was lessening the social
isolation that many mental health clients feel.Thus, some
care co-ordinators noted a growth in their clients’ social
networks:
It has increased her confidence, it reduces her social
isolation, she’s more positive and because she’s had to
deal with things like interviewing people etc, it’s helped
move her on in terms of social interaction etc. It’s all
helped make a change from [her] being in a very small
world to building a bigger social world.
(Care co-ordinator)
Service Use
HOSPITAL ADMISSIONS
In the short term, it was too early to say whether direct
payments has had any significant impact on reducing
episodes of mental ill-health or had contributed to lessened
service use. However, given the slow uptake and length of
time on direct payments, this may be demonstrated over a
longer period of time.
Although service users still experienced periodic mental
health crises, it began to become apparent that through the
support structures that they had developed through direct
payments, many recipients were able to spend less time in
hospital during or following an acute crisis. Thus, one client
managed to avoid going into hospital and, with the support
of her PA, just went in on a daily basis during a mental
health crisis.
I am pretty sure I would have been hospitalised quite
some length of time, it would have meant me having
longer spells in hospital and as our local hospital, mental
hospital isn’t particularly good, I think I would have given
up by now, and would have killed myself.
Hospital admissions, she has only had five weeks in
eleven months, where she would have probably been in
for about six months now, so it's helped with that, so
there's been massive benefits really. (Care co-ordinator)

In addition, it was noted that admissions were more likely
to be voluntary, rather than compulsory. Also having the
support of a PA through direct payments made clients’ time
in hospital more bearable and could enable them to leave
hospital earlier :
It meant I could get out of hospital during the day
otherwise I’d have been ward-bound, it was the only way
they could let me out of hospital, and it prevented me
from being sectioned.
IMPLICATIONS FOR WORKER ROLES AND RELATIONSHIPS
Par ticipants made reference to other impact on service
use. These included improving the clarity of roles and
relationships between workers and clients. For example, in
some cases, having direct payments meant that the care
co-ordinator was freed up from doing some support work
which could enable them to engage clients in more of their
specifically ‘therapeutic’ work45.Similarly, Witcher et al
(2000) argued that direct payments may enable social
workers to use their time differently with service users and
more productively.
ACCESS TO SUPPORT
In a number of examples, direct payments made a differ-
ence for clients in getting support. In part, this was due to
clients not accepting support unless it was something (or
someone) they chose. Relevant here, a number of clients
reported bad experiences of statutory services. In addition,
because of the nature of the support possible via direct
payments, some clients were able to access support which
was previously unavailable to them because it was not
provided directly by local mental health services.
‘RECOVERY’
The identified benefits bring us close to the emerging
concept of ‘recovery’ in the mental health field (Jacobson
and Greenley 2001;Turner-Crowson and Wallcraft 2002;
Ralph 2000). Rather than having a pre-set agenda of what
‘recovery’ may mean for people with mental health needs,
this evaluation indicates that what is crucial is having
assistance to be able to pursue one’s own self-defined goals
and aims. Thus, one recipient clearly identified her goal as
getting back into paid work:
For me recovery meant being able to work again, that’s
what it has always meant to me. I think if I didn’t have
[direct payments], I don’t think I would have been able
to go back to work. I know direct payments is only a
part of it but it’s all of those things combined have
helped me to get to the point where I felt like I am
recovering. I think that it’s whatever you feel is normal
for you…it’s not what everybody else feels, it’s how you
feel that that’s appropriate, you know, because it might
be that you don’t want to work again, you might want to
be able to pursue a hobby or go somewhere else and
live, but it’s whatever it is for you.
Tu r ner-Crowson and Wallcraft (2002) have identified a
number of themes that should be part of a recovery
agenda. These included being believed in and encouraged
by at least one other person; taking personal responsibility
for one’s own life; acting to re-build one’s own life;
developing valuable relationships and roles; changing other
people’s expectations; gradually gaining a sense of greater
well-being; developing new meaning and purpose in life etc.
Many recipients reported improvements in a number of
these aspects of their lives after setting up support through
direct payments. That recipients repor ted a growth in self-
worth is particularly significant given that mental health
service users often argue that the experience of using
psychiatric services can contribute to low self-esteem,
confidence and self- worth (Johnstone 2000).
43

It is important to bear in mind when considering these
benefits that it is the quality of support possible through
direct payments that is crucial rather than direct payments
per se. As has been continually pointed out by advocates of
the Independent Living Movement, direct payments are
merely one means to the greater end of independent living
and not an end in itself. With this in mind, it is worth
noting that direct payments may be just one way to achieve
the kinds of support and services that ser vice users want
and need.
A number of service users had a direct increase in personal
input following accessing direct payments, especially if it was
developed to meet a need currently not being met through
directly provided services. Therefore, it may be hard to
determine what benefits directly relate to using direct
payments and what is due to a greater level of support
input. However, it is clear that there are some benefits
which are directly linked to the greater choice and control
which direct payments facilitate. As Stainton and Boyce
(2002) have argued, the flexibility of being able to organise
support around one’s life rather than having to live one’s
life around support was extremely impor tant in generating
the other benefits. In turn, this helped to open up new
opportunities and began to enhance quality of life46.
In addition, the support with ‘everyday’ tasks that service
users have developed through direct payments was
important because of the way in which it was provided.
This can be difficult to achieve through ‘traditional’ mental
health services. Direct payments may enable individuals to
have specific social contact or company that suits them and
is not professionalised or medicalised.
When direct payments work for clients it seems to be
based on the greater flexibility, choice and control they are
able to exercise. In particular, this relates to the flexibility
about when and how they wanted to do things, the
increased range of activities they could do and places they
could go:
It’s given me a choice, given me the ability to choose for
myself who I employ, who I make as a friend, you know,
it’s given me that choice.
It’s given me a lot more control…Before I was told ‘it’s at
this time, and at that time, or you are not getting it at
all’ or whatever.
44
This was also recognised by care co-ordinators who had
seen these benefits for their clients:
It certainly has given her the flexibility to decide how,
and to define the service she needs. It’s certainly
meeting her needs in a much more flexible way than the
other service was. One of the problems with the other
service was the frequent change of workers, workers
being so busy or crises occurring so that they were
having to cancel appointments or couldn’t come at the
time that was specified and there wasn’t the consistency
that she needed. Part of it is the consistency of workers
and being able to come at the time and for the amount
of time that was arranged and things like that…It’s
much more flexible and much more empowering, so it is
meeting her needs much better than the other system
was. (Care co-ordinator)
However, difficulties arose when clients found it hard to
make choices and decisions, especially if there are
constraints and pressures that limited their ability to
exercise choice. Such difficulties emerged most acutely
when clients attempted to employ their own PAs47.Whilst
reported benefits were significant, there were some
accompanying disadvantages around losing a certain
amount of security and occasionally experiencing greater
uncertainty, at least in the short term. Greater ‘choice’ is
accompanied by responsibilities, constraints and conse-
quences. Many mental health service users may feel that
their capacity for exercising choice and control has been
undermined by their experience of mental distress and
long-term use of mental health services. This means that
the benefits of direct payments and independent living may
take some time to realise.The process may be a long and
difficult learning process both for professionals in giving up,
and service users in taking, more control. This also reaffirms
the point that ‘control and choice’ are not all or nothing
fixed points but rather a process:
It’s been a long learning curve. I now know that it’s
about what I want. I didn’t grasp the fact that this was
about me – me to choose – I didn’t have any concept of
it at all. It’s taken me all these months to grasp that I
needed to know what I wanted.
5.3 Flexibility, Choice and Control

However, if as we have seen, this is a crucial element in the
benefits that service users have started to realise, then the
impact may be even greater for it. Thus some clients
referred to direct payments as potentially being able to
facilitate them to reclaim their life and/or make their lives
worth living:
I think independent living is all about getting your life
back and organising your life. It means really claiming
what you have lost, after disasters, traumas, everything
that’s happened to you and reclaiming it bit by bit.
I can come home from work and things are done and I
know that I haven’t got anything to worry about and I
can sit and relax and start to enjoy my life again, to
have some really good quality to it, rather than just
existing, because that’s what I was doing, you know. You
can get so despairing of living your life like that, that you
don’t want to live it any more, so it gives you quality and
choice, and I think it’s really set me well on the way of
recovery, so I am hoping to maintain that.
In view of key concerns in mental health about levels of
suicide and self-harm (Department of Health 2003) and
the degree of hopelessness and despair that are often
experienced by service users, this benefit is significant. As
one care co-ordinator recalled:
People with serious mental health needs often have little
self-confidence and no sense of control over their lives,
particularly when they have a lot of control taken away
from them when in hospital or whatever. This can
contribute to people’s despair and their feeling like their
life just isn’t worth living. After all, many of our clients
are at a high risk of suicide. [Direct payments] helped
her to feel good about herself and give her back some
control and confidence – this can help people actually
feel like life is worth living. In this case it’s helped her get
back her life and to keep it. I know it’s a massive task
and it might not always work out, but this is what it’s all
about. That’s no small thing.
Support with ‘everyday’ things, such as befriending, is very
much in line with the philosophy of the Independent Living
Movement and the social model of disability (Barnes 1992;
Campbell and Oliver 1996; Morris 1991;1993). As
previously suggested, these argue that regardless of some-
one’s ‘impairment’, they should be able to do the things that
other (non-disabled) people take for granted, with the
provision of assistance. Given that many mental health
clients may be socially isolated, the befriending aspect of the
support that PAs are able to provide seems significant and
goes some way to incorporating the needs of mental health
service users within the broader definition of independent
living. However, a lack of clarity about the function of PAs,
and a limited conception of their role may mean that they
do not necessarily facilitate a person’s wider social network,
if indeed that is their purpose.
Having presented the findings in relation to the perceived
benefits of using direct payments, the next chapter moves
on to draw out some key issues relating to the
implementation process.
45
41 e.g. if they didn’t have a personal/intimate relationship.
42 However, this may also reflect a self-selected sample of clients who
were more satisfied with direct payments and/or were encouraged by
their direct payment support worker or care co-ordinators to take part
in the evaluation.Although it was not possible to control for this, a
range of recipients was interviewed with a variety of experiences of
using direct payments and they were able to give thoughtful and
considered answers which are worthy of consideration.
43 This is not indicated in figure 5.1.
44 For example, reducing hospital admissions.
45 e.g. CPN’s supporting clients with Cognitive Behavioural Therapy.
46 For example, through controlling the times at which support is
provided and being able to select staff that people could trust and feel
comfortable with (Stainton and Boyce 2002).
47 For a more general discussion on employing PAs see Glendinning
et al 2000b.

46
The pilot took place during a time of unprecedented
change in the national and local organisation and structure
of mental health services. Attempts at increasing direct
payment take-up in mental health happened against a
backdrop of other new policy imperatives which could
detract from the ability to focus on implementation.
Par ticipants raised issues relating to changes at both
the national and local levels.
NATIONAL LEVEL
At the national policy level there is commitment to the
wider implementation of the direct payments across care
groups.They have been described as ‘a key step in the
Government's commitment to promoting independence
and freedom of choice for those needing care and
support…By giving individuals money in lieu of social
services, people have greater choice and control over their
lives, and are able to make their own decisions about how
their care is delivered’48.
However it is not clear, as yet, how the guidance on direct
payments fits with mental health policy.The National
Service Framework (NSF) outlined new ways of working
and new models of service deliver y for people with mental
health problems (Department of Health 1999a). It set
seven standards for mental health with implications for
action at all levels and across a broad range of organisa-
tions. One of the underlying principles of the NSF is that
people with mental health needs can expect that services
will offer choices to promote independence.This theme has
been further articulated in broader health and social care
policy49 and in mental health policy with an increasing
emphasis on ‘recovery’ (Department of Health 2001).
There has been a sustained focus on the implementation of
the NSF and on the development of new teams50 and new
workers51 as also described in the NHS Plan (Department
of Health 2000a).Targets have been established for Primary
Care Trusts (PCTs) to meet the commitments within the
NHS Plan and Local Implementation Teams (LITs) are
required to self-assess their performance against a number
of targets which relate to the NSF.Although more recently
the numbers of people receiving direct payments has
become a performance indicator for Local Authorities52,
the focus on NSF targets means that, in reality, the
implementation of direct payments has not been a
priority in mental health ser vices.
6.1
Changing National & Local Context
CHAPTER 6
Implementing
Direct Payments
in Mental Health
Contextual and
Organisational
Issues
This chapter explores the contextual factors, infrastructure
and mechanisms that supported or hindered the
implementation of mental health direct payments within the
national pilot sites. As with any implementation process, a
wide range of factors emerged from the analysis of inter-
view and questionnaire data which, in combination,
influenced outcomes. Key issues are explored in relation to
the changing national and local context, leadership for the
initiative, the role of the local steering groups in
co-ordinating the project, the pathways, policies and
procedures for direct payments, funding for the initiative,
knowledge and awareness among care co-ordinators, the
role of the direct payments support agencies and other
organisations.

LOCAL LEVEL
National mental health policy has also impacted on the
organisation of mental health services at a local level.
Services have been restructured to promote the
integration of health and social services through the
development of integrated mental health services. In some
areas this has involved the development of Care Trusts
whilst many others are pursuing alternative organisational
arrangements to suppor t the integration of health and
social care in mental health services. At an operational level
this agenda has meant the development of integrated line
management and integration of care management with the
Care Programme Approach (CPA). Alongside this there has
been the development of specialist mental health Trusts,
changes to commissioning with the development of PCTs
and the creation of new organisations such as the National
Institute for Mental health for England (NIMHE).
These restructurings have consumed staff time and energy.
They take time to understand, have resulted in changes in
personnel and management structures, particularly at senior
and middle management level and have impacted upon
local capacity in some instances leaving posts unfilled. These
changes have created confusion and uncertainties about
roles and accountability and responsibility in relation to new
initiatives and challenges such as direct payments.
At all levels, local leadership was identified as an important
factor in providing a framework and direction for successful
implementation within the pilot. Effective leadership helped
facilitate local sites to fully engage with the pilot by
providing a context in which workers were encouraged to
risk-take, experiment and test out limitations and
possibilities of direct payments.
However, leadership could be demonstrated in a variety of
ways and at different levels amongst the pilot sites.There
were different aspects of leadership ranging from ‘formal’
leadership structures (e.g. management) and ‘informal’
leadership from key workers53.Informal leadership or
involvement from workers at the ‘practice level’ will be
considered in the next chapter. This section considers
formal leadership: the senior mental health managers and
local mental team managers.
SENIOR MANAGEMENT
Where senior management provided a framework and
direction for the pilot54 ,this helped develop the cultural
context to support implementation. Other research has
identified the contribution of leadership as an impor tant
factor in facilitating implementation (e.g. Dawson 2000).The
evaluation data suggested that it was essential that senior
management in the Local Authority and mental health
services offered guidance and provided the co-ordinated
infrastructure that was necessar y to ensure implementation.
They could also provide answers to more strategic issues
that needed addressing in order for direct payments to be
available, accessible and viable. This included ensuring that
resources could be freed up for direct payments and that
direct payments were prioritised and kept on local mental
health teams’ agenda.
In addition, they needed to ensure that various key workers
in the system were adequately supported and informed to
be able to carry out the necessary tasks to ensure that the
direct payments process worked. Establishing a link
between strategic and operational managers emerged as
important. For example, in order for direct payments to be
considered more widely, senior managers needed to ensure
that local team managers were aware of direct payments
and were themselves encouraging their teams to regularly
consider direct payments as an option.
47
6.2 Leadership

In most cases it was important that a senior Local
Authority manager with a responsibility for commissioning
chaired the steering group.
The service manager chairs the meeting.That’s very
good because when we have identified issues and
concerns about the way we felt things need to improve,
people can bring issues back and [s/he] will go away
and address those, you know. (Steering group member)
Conversely, broader national and local reorganisations often
resulted in changes in senior management, which in turn
impacted on the ability of sites to develop consistent
leadership and ownership of the implementation process.
This was identified by local site co-ordinators as a key
factor where progress was slow. For example, in one site
the Local Authority lead was the third acting Divisional
Manager in two years. However, a formal commitment to
implementation did not necessarily translate into active
promotion; the active commitment of senior management
was also identified as important. Direct payment support
services were critical of what they considered to be token
support provided by senior management and sometimes
felt that, whilst they liked to be associated with an
innovative national initiative, this did not always translate
into real support:
There are various people doing different things but
there’s no one really pushing it or driving it through…
It’s like they like the headlines without doing the work.
(Direct payment support worker)
TEAM MANAGERS AND SENIOR PRACTITIONERS
Leadership at senior practitioner and team manager level
was a key factor in successful implementation. Increased
take-up of direct payments requires imaginative thinking to
be built into practice and support at management level.
Thus, in some instances, team managers supported workers
in having time off for direct payment training, and facilitated
the development of a culture of creative and reflective
thinking. They could also ‘nurture’ the interest of care
co-ordinators in direct payments as and when this arose.
Like senior managers, it often helped if team managers or
senior practitioners with effective influence in a team were
on the steering group. More specifically, direct payments
could be regularly raised as an option in individual
supervision and team meetings where their possibilities and
limitations could be discussed.Thus, one particularly
influential senior ASW team leader recalled:
48
I sit in on all the team meetings, and sit in all the
allocations meetings which has all the team members
there, so that’s the best forum to push direct payments
really.
Similarly, one care co-ordinator reflecting on the team
manager’s role commented:
He has not let up, he is passionate about direct
payment, and he supervises all district staff and sells it
to them. He always urges the team to consider direct
payments. He has weekly team meetings and regularly
reminds care co-ordinators of direct payments. He is
always asking whether a particular case is appropriate
for a direct payment. I do not think it would have
happened without him.
On the other hand, a low level of involvement from mental
health team managers frequently made it hard to develop a
keen and active interest in direct payments within local
teams:
If we did this again we would do it differently.We would
have more involvement and ownership from team
managers.We were wrong in missing this out. (Local
Authority lead)
CARE CO-ORDINATORS
In addition, individual care co-ordinators who took a lead in
developing the option of direct payments were often
described as ‘product champions’ and were able to
engender collective enthusiasm for direct payments in local
teams and help enable direct payments to be part of the
culture or thinking of local teams. The role of care
co-ordinators will be considered fur ther in the next
chapter.
Par ticipants flagged up the value of cross-sector
commitment to ensure successful implementation. Joint
working and co-ordination of different aspects of the
services such as mental health teams, training, finance,
commissioning and direct payments teams enabled a team
approach to implementation. In many cases, it was actually
the steering group, set up specifically during the duration of
the pilot, which facilitated the communication that was
necessary for implementation.

The steering group has kept the work on track,
questioned practice and taken decisions e.g. use of
under-spent monies, given support and encouragement
and raised awareness. (Steering group member)
It would not have happened without the steering group
– it has set a framework and plan for implementation
and also helped to encourage those involved to ‘spread
the word’.… It was a platform for launching it, in terms
of just getting started off with marketing it to a wider
audience and practitioners. (Steering group member)
The impact of the steering group was often dependent on
good cross-sector representation where membership
involved all key players including Local Authority training
officers and finance/contract officers as well as strategic and
operational managers, local team leaders, direct payment
support workers/managers and local pilot co-ordinators. It
was also beneficial to have the active involvement of user
groups or user involvement workers who could generate
interest and provide information and support to users.
In addition, it was important that key people in the steering
group developed each necessary stage of the process55 and
reported back so that all the essential parts of the process
were being developed and co-ordinated.
We have all kind of been involved in different pieces of
work and that’s possibly the success. It’s not been a
steering group for people who have gone away and they
just wait for the next meeting, you know the kind of
thing…it’s so co-ordinated and you feel as if you have
touched all the bases really. (Steering group member)
I remember one time, [the direct payment support
worker] came in, and just even before the meeting
started she said, ‘what are you going to do about all
these referrals that are not coming in?’That prompted
people like [a team manager] to go back and do
something.Then the training was run and that prompted
[the senior mental health service manager] to send out
a memo as well to managers saying, you know,‘start
using this service’, so I think that’s just kept things going.
(Steering group member)
In one site, good relationships were developed with the
training section of the Local Authority and they found it
beneficial to have a senior mental health training officer on
the steering group. Respondents described this as being
instrumental in facilitating access to training and training
budgets as well as helping to develop new training initiatives
in relation to direct payments. In some cases, steering group
members planned and delivered training sessions for
professionals which capitalised on their interagency working.
In turn, this helped to raise the profile of direct payments:
I think the training has been a highlight in terms of
interagency working from all of us, so there’s King’s and
the ILC and the Local Authority, so bringing everybody
together to look at what needs to be said. (Steering
group member).
It was also helpful if an individual who was actively involved
in the pilot was also part of the process of agreeing direct
payment packages.This was seen as facilitating the process,
because they had the knowledge and awareness about
direct payments that could support any direct payment
packages and could also help to smooth out any problems
in the process. Thus, in one area, a team manager who was
very involved in the pilot looked through each direct
payment request and, if appropriate, recommended it to
the funding panel. Effective co-ordination at this level could
enable greater flexibility in the system, facilitating take-up
and reducing unnecessary paperwork and bureaucracy.
49
6.3 Co-ordination: the Role of the Steering Group

The process of getting on direct payment for those with
mental health problems is very different from that for other
care groups.This is particularly true of direct payments for
people with physical disabilities where the process has
become clearer and is more frequently used. The
experience of direct payments support workers who were
working across all care groups highlighted the difficulties of
finding out who was responsible for different aspects of the
process. One direct payments support worker commented
that ‘it has been like working with a whole new Social
Services Depar tment’. Workers felt that the pathways that
an individual had to go through to access a mental health
direct payment were unclear.There was a lack of clear
guidelines and procedures for staff to follow when trying to
access direct payments for mental health clients. At best this
could delay the process, at worst it could put workers off
pursuing direct payments as an option.
Developing effective communication and appropriate
processes to access mental health direct payments was
essential. Once the processes were in place, any hold-up
should then, theoretically, arise only from users themselves
who were working at their own pace.
SPECIFIC MENTAL HEALTH PROCEDURES
It was important for sites to set up and develop specific
mental health procedures for direct payments in mental
health. The steering groups were frequently influential in
developing specific guidelines and pathways and providing
advice and information on such things as the referral
process, financial requirements, the support infrastructure
available to service users, the assessment process and
eligibility criteria. Pathways needed to be simplified both
for care co-ordinators and service users to be able to
understand and use them effectively. Due to the
predominance of fears about workload and extra
paperwork, a couple of sites found it useful to develop a
‘Who’s Who’ guide.This included information about to
whom different aspects of the paperwork should be sent
and about the roles and responsibilities of various key
players in the system.
50
ELIGIBILITY CRITERIA
Participants in all pilot sites reported difficulties with
eligibility criteria. They perceived these as a potential barrier
to people with mental health needs accessing direct
payments. Direct payments have the same eligibility criteria
as those of general community care services. However,
because criteria were being tightened up in relation to the
Fairer Access to Care Services guidance (April 2003), some
participants claimed that increasingly people were only
eligible if they were ‘critical’ and, for example, are at risk of
being hospitalised. However, the critical nature of their
mental ill-health could mean that such clients are less likely
to be judged ‘willing and able’ to take-up direct payment.
One direct payments support agency commented that
their longest and most ‘successful’ direct payment client
might no longer be eligible for direct payment once the
new eligibility criteria came into force.
Eligibility criteria differed across sites, both in terms of what
needs were deemed eligible and in what ways they could
be met by direct payments.The application of additional
local criteria, for example that direct payments cannot be
used to replace services already provided by the local
authority, often resulted in difficulties in access. A high
eligibility criterion for access to social care suppor t has
been cited elsewhere as a barrier to mental health ser vice
users (see Maglajlic 1999). Similarly,Witcher et al (2000)
reported considerable variation in the conditions which
people in different parts of the countr y are required to
meet in order to qualify for direct payments.
FLEXIBILITY OF USE
Against this background, enabling a greater take-up of direct
payments required a willingness to be flexible about the
ways in which direct payments could be used. Where
take-up of direct payments was high, local areas were more
conscious of and able to operate outside of exclusionary
limitations on what direct payment could not be used for56
and also avoided deciding in advance what it can be used
for. As the following quotes illustrate, this also required a
willingness to operate more clearly within the principles
and philosophy of the Independent Living Movement
whereby direct payments are a means to greater
independence:
6.4
P
athways, Policies & Procedures

Part of it is the flexibility of the direct payment scheme
and never putting restrictions on them from day one
about what you can and can’t do and how small and
how large the package is. We have been prepared to go
with the spirit of the Direct Payments Act.
(Direct payment support service manager)
There’s no point in trying to double-guess what it may or
may not be used for. We did actually guillotine those
conversations on a couple of occasions. We said ‘let’s see
what people are going to come up with’ because surely
the ethos of direct payments is about independence and
responding to individual need. We did not get bogged
down in uses of direct payments and that was really
important. In social care people think much more in
terms of boxes that services operate in, and hence when
you come forward with an idea for a direct payment, it
can seem fanciful, when in fact it’s not, because they’re
outside of the box. It’s been really important that we
have been able to be flexible. (Steering group member)
Basically, we would not turn anything down if it is within
the parameters of assessed need and meeting that need
through whatever way. (Senior mental health manager)
This approach required a commitment to move towards
developing self-assessment tools which helped to move
beyond service driven assessments and develop more
flexible packages of care.Therefore and conversely, a key
barrier to the greater usage of direct payments was the
limitations in conceptions about the potential of direct
payments.
HEALTH AND SOCIAL CARE
During the pilot phase there were no examples of any
health authority money being made available for direct
payments. This is, in part, related to the complexities
around funding and the fact that eligibility for direct
payment is still via a community care assessment
(Glendinning et al 2000c). Perhaps because of this focus,
care co-ordinators were reluctant to pursue any
health-related support through direct payments. In a small
number of cases, a direct payment referral or initial inquiry
was rejected on the grounds that it would be for a health
need. For example, common requests from services users
for psychotherapy, and alternative therapies such as
aromatherapy were frequently seen as ‘health’ and therefore
not deemed suitable for direct payments. As one steering
group member commented:
I have got a client who is Punjabi speaking and I think it
has been agreed previously that they would benefit from
some sort of psychotherapy and there is no one in-house
who can provide that. I have written to health
management in the past suggesting that if they cannot
provide it, and it’s been identified, they ought to be
buying it in, but they are not doing that at the moment
and we can’t get it via a direct payment.
(Care co-ordinator)
In practice, direct payments are still tied to needs identified
as ‘social’ care needs, in part because direct payments come
under the auspices of Local Authority legislation which does
not empower Health Authorities to make payments.
However, government policy recommends greater joint
responsibility between health and social services to ensure
maximum independence of service users. In 1998, the
Department of Health issued a single set of service
development plans covering both health and social services
which placed a joint responsibility on health and social
services to ensure the maximum independence of ser vice
users (Depar tment of Health 1998). Furthermore, Health
Authorities have been reminded to provide services
compatible with greater independence created via direct
payments (Department of Health 1999b). In addition,
Health Act Flexibilities, which came into force in April 2000,
give the power to enable pooled budgets between Health
and Social Care authorities and greater integrated provision.
Health Authorities have the power to transfer money to
Local Authorities, particularly in cases of complex needs
where care packages are managed by social services
(Glendinning et al 2000c). Therefore, it seems that despite
national guidance, there is still little evidence of this
potential flexibility being used to facilitate greater use of
direct payments through contributions from Health
Authorities.
One of the solutions to direct payments in mental health
must be the greater involvement of health and the
freeing up of health money.There is lots of talk about
joint working, health/social services etc. – but it does not
materialise in direct payments. (Direct payment support
worker)
The difficulty in the lack of flexibility in pooling budgets
relates to funding issues and the availability of flexible
budgets more generally.
51

It is apparent that limited resources are an important
constraint to the wider use of direct payments and services
more generally. However, it was often unclear how far
budgetary restrictions created barriers to people’s
individual access to direct payments.The broader literature
on implementation (for example Hill 1997) suggests that
whilst participants often mention financial resources as a
barrier to implementing new developments, their availability
is not necessarily the key to successful implementation.
Indeed, it is the availability of the required combination of
resources that is important.This includes money as well as
flexible support structures, availability of PAs, motivated and
knowledgeable care co-ordinators and so on.
Given that direct payments are just another way of
providing services, these should not be any more expensive
than traditionally provided services. In theory, this should
not act as a specific barrier to direct payments any more
than to community care services. However, in effect, direct
payments are limited by general community care resource
restrictions both in terms of the amount of money available
and in what they can be used for57.As already mentioned,
eligibility criteria may affect access to direct payments and
this is tied to more general budget restrictions and cutbacks
in welfare provision. More specifically, an important barrier
to successful implementation in mental health is the limited
rates available for direct payments, for example, the pay
rates available for PAs.
As well as the amount of money available for direct
payments, greater take-up was also affected by the degree
of flexibility of budgets, for example being able to shift
money between budgets or divert monies from Local
Authority or agency provision to direct payments. This
difficulty generated concerns about taking money away
from other services provided under block contracts. This
could result in money being ‘locked up’ in services often
valued by staff and users. In turn, services provided through
the Local Authority through block contracts often
influenced what individuals were able to get via a direct
payment. Thus, if a particular service, such as home care or
day care, was funded through a block contract, it was hard
to free up any of this money to provide any home care or
day care for individuals through a direct payment. In
addition, some services were commissioned in such a way
that it was difficult to separate out aspects of support that
a person may want to be provided by direct payments.
For example, some individuals who lived in supported
accommodation found that some of their support was tied
into their housing agreement.This meant that it was hard to
get a direct payment for support that their housing project
already provided directly as part of their suppor ted
accommodation.
In other research, a lack of flexibility between budgets has
been identified as a major barrier, particularly where there
were no ring-fenced monies for direct payments (Witcher
52
et al 2000). In the National Pilot, two local sites had a
ring-fenced budget for direct payments for the duration of
the pilot.This helped to overcome difficulties with budget
flexibilities, at least temporarily, as these sites experienced
the greatest increase in take-up58.This strategy seemed to
be successful because it prompted Local Authority leads to
encourage awareness of direct payments across local teams.
In turn, this encouraged care co-ordinators who, in a
climate of limited resources, wanted to ensure that they
used every available avenue of funding for their client’s
needs and because it was considered an ‘additional’ pot of
money they did not want to lose it. As one participant
put it:
It was put to us that it’s a separate pot of money so it
was a bit like ‘use it or lose it’.
Within these sites, there was consensus that ring-fencing
direct payment money had ‘made a huge difference, it
created an atmosphere, awareness and knowledge about
direct payments in the team’ (Mental health team manager
and steering group member). Fur ther evidence for this
came from care co-ordinators who acknowledged that if
they had known that money from direct payments would
come of the general community care budget they may have
been more reluctant to have pursued it.
Therefore, in the long term, greater knowledge about the
actual source of direct payments and it being part of, not
additional to, the community care budget may decrease the
likelihood of promotion of direct payments if it is no longer
viewed as an ‘additional’ source of funding. That is, unless
other positive benefits to receiving direct payments are
identified. In addition, once this pot of money was used up,
more general budgetary tensions and concerns arose
about where the money for direct payments would come
from. Participants raised concerns about what would
happen after the pilot or after the ring-fenced money was
exhausted.
There’s a real awareness in [an area within the site]
about direct payments and a wish that people will use
them, it’s seen as a positive thing…The panel are getting
quite excited about direct payments at the moment so
we’re getting lots of stuff agreed. But I’m sure this will
change and they’ll start being more selective about what
they fund. (Care co-ordinator)
Thus, whilst ring-fenced money for direct payment packages
may help initially to kickstart implementation, it could
engender a false sense of budgetary security which does
not necessarily address wider problems with freeing up
money for direct payments unless a more flexible
commissioning strategy is developed. Indeed, there was
little discussion of the potential to actually redesign service
provision and commissioning which would enable greater
flexibility in how services are provided.
6.5 Funding

Lack of knowledge and awareness amongst care
co-ordinators remains a key barrier. Despite the National
Pilot which made some inroads into raising awareness, care
co-ordinators still lacked sufficient knowledge about direct
payments. Care co-ordinators were confused and unclear
at first, and often continued to be confused about direct
payments. They were uncer tain about what direct
payments could be used for, how they were funded and
how they could work in practice for their clients:
Although colleagues tend to be fairly positive about it
and people have gradually received training about direct
payments, it’s difficult for people to actually see how it
works. (Care co-ordinator)
In relation to training, feedback from care co-ordinators
suggested it was important to include positive working
examples or ‘live’ case studies. Case studies highlighted
issues that needed to be addressed and helped workers
look for positive ways around any potential difficulties with
individual take-up. What specifically helped this process was
where the case studies actively connected with people on
care co-ordinators’ caseloads and with concerns about their
clients’ needs not being met:
In the training we had case scenarios and care
co-ordinators were very imaginative about the care
packages they put together… They very quickly got their
heads together and put a very constructive care package
together and actually said how they would use direct
payments in those cases. They were not extraordinary
cases, you know, they were fairly typical cases that get
presented to CMHTs. (Senior mental health manager)
The potential difficulty of access to direct payments for
people with serious and long-term mental health needs is
considered in the next chapter. However, this perceived
difficulty highlights that rather than just training and
awareness-raising sessions presenting working examples, it
might be better to encourage care co-ordinators to
consider how direct payments might work for their
particular clients. Otherwise care co-ordinators could
continue to think that this could not work for their clients.
In addition, training sessions were particularly beneficial
when they built in enough space for the articulation of
concerns and questions59.This helped to assuage any
cynicism about direct payments. In addition, care
co-ordinators found it helpful if sessions could facilitate
practical, creative and positive solutions to difficulties in
access and develop possible strategies to overcome any
problems that could arise (e.g. advanced directives to
address fluctuating need/crisis etc.). This also highlights the
need for raising awareness to emphasise the positive
benefits of direct payments and not just the potential
problems.
I went on a half-day training course about two years
ago. I can’t remember going back and thinking about it
or thinking that I must do something about it to be
honest. People tended to focus on the problems really,
like ‘how will it work, how could it apply to our clients’
etc. It would have been much better if we would have
had someone who is actually using it coming in and
saying ‘this is how I’m using it and this is how it’s helped
me and that the benefits outweighed all the work.
(Care co-ordinator)
On a slightly different point, some care co-ordinators had
difficulties accessing training and getting appropriate and
comprehensive information about direct payments. Direct
payments support ser vices often repor ted that training
sessions had frequently been difficult to organise and
prioritise. Comments included that there was often
insufficient support for training, insufficient time devoted to
it, and/or that sessions had been cancelled. Increasingly,
excessive workloads and crisis work often made it difficult
to get time off to do training, especially if workers were
insufficiently supported by management. In addition, limited
opportunities for training meant that direct payments had
to compete with other demands for training, which related
to more immediate and pressing concerns60.One Local
Authority worker repor ted that a recent training course on
personality disorders was three times oversubscribed and
yet it was hard to get workers on direct payment training.
On the other hand, when training sessions went well they
could be really beneficial:
Most of the people that came on the training were a
bit ‘I’m not quite sure why I’m here’ and ‘what’s this all
about?’The best results were that people walked out of
the room on the second day and moved from saying,‘not
only do I not know about this, but I do not really believe
it’s going to work’, to saying ‘we really have changed our
minds’; a lot of people said that and that was the best
part of it…it was amazing. (Senior mental health
manager)
53
6.6 Knowledge and Awareness amongst Care Co-ordinators

However, despite having been on training sessions or having
heard presentations, many care co-ordinators still expressed
uncertainty and confusion about direct payments. It was
clear that training sessions required follow-up to keep
direct payments on peoples’ agenda and to prompt thinking
about direct payments. As one care co-ordinator pointed
out:
I think there’s a much greater awareness now, but it still
needs to be kept on the agenda. It’s something that
you’re not thinking about really, unless you hear about it,
and then it prompts you again about direct payments.
I think it would be good for people to come to CMHT
meetings regularly and talk a little bit about direct
payments. It would be good to do this every so often to
keep it on the agenda… If it was part of the ongoing
promotion of it, then that would be really useful I think
and would be picked up a lot more….It’s about having a
way in which it is constantly put back on the agenda,
keeping it at the forefront of people’s minds.
(Care co-ordinator)
The importance of personally relevant accounts of clients
successfully using direct payments has been highlighted
elsewhere. Such research indicates the need for more
supportive introductions to direct payments which include
examples that workers can relate to and adequate time for
questions and answers (Holman and Collins 1997, Maglajlic
et al 1998). Furthermore, Ridley and Jones (2002)
recommend that information about direct payments should
be made accessible and relevant to mental health service
users by including their perspectives and stories of
individuals with mental health problems who have used
direct payments (Ridley and Jones 2002). Ideally, training
sessions should involve service users themselves who are
currently using direct payments.
54
A crucial element in increased take-up was the direct
payments support team. This confirms previous research
which recognises that a well-resourced direct payment
support service is necessar y for increased up-take of direct
payments (Barnes 1992; Hasler et al 1999; Hasler 2001;
Witcher et al 2000; Ridley and Jones 2002; Stainton and
Boyce 2002). In particular, the support offered by the direct
payment support ser vice to both the care co-ordinator and
the individual service user was crucial to the care
co-ordinator’s experience of the ease of the process of
direct payments. Indeed, many care co-ordinators felt that
without this support they would not pursue direct
payments as an option. As two commented:
The role of [the ILC] is crucial. If I had to manage all
this myself I would not even want to go there.
I think we definitely needed their support to go through
it because it was the first time I had gone through this
process. Without her, I do not think I would have been
able to do it, no definitely not.
INDEPENDENT AND PROACTIVE
The pro-activeness of local direct payment teams was very
important in promoting direct payments to mental health
teams and service users. One direct payment suppor t
worker reflected on the effectiveness of the continual and
active ‘promotion’ of direct payments both to local mental
health teams and to service users:
It became a process of continual movement ensuring
there is a constant coverage of awareness and
information delivered across all areas…so there’s been a
lot of going back to the day centres, it’s that movement,
it’s about not keeping still and staying quiet.
This pro-activeness was particularly helpful in assisting
clients with planning possible care packages in the run-up
to their needs assessment, and particularly in moving
towards developing self-assessments (see Hasler et al 1999;
Ridley and Jones 2002; 2003). In addition, the earlier on in
the process the direct payment worker intervened, the
more helpful it appeared to be for both service users and
care co-ordinators. The importance of a pro-active and
independent support agency in promoting take-up has
been demonstrated previously in other care groups
(Campbell 1997; Hasler et al 1999; Witcher et al 2000)
6.7
Direct Payments Support Agency

In general, the data suggested that the earlier the direct
payment support ser vice became actively involved in
assisting clients develop ideas about their care needs, the
more likely a direct payment may eventually go to decision/
assessment.This was related to the support and
information the direct payment team can offer users in
going through the process prior to assessment. In this way,
the direct payment support ser vices can play a crucial role
in preparing clients in advance, in helping them think about
their needs and generating ideas for direct payment
packages. This alleviated a lot of the concerns and extra
work for care co-ordinators and service users. In par ticular,
care co-ordinators often valued working closely with the
direct payments support workers in developing an
appropriate care package. Where direct payments support
services got involved later in the process, care
co-ordinators tended to struggle more with the process:
Although [the direct payment support service] were
excellent, they could only really start when we have had
a provisional agreement that they can pursue it. After
that they were excellent but I really needed them
earlier on. (Care Co-ordinator)
MODEL OF PROVISION
Overall, it was more important how independent and
autonomous the local service acted, than whether or not
they were an independent or an ‘in-house’ support service.
One in-house support service was able to operate to a
large degree independently and offered intensive support in
the early stages and in the process of setting up of direct
payment packages.This ser vice was also very proactive in
promoting direct payments and raising awareness amongst
care co-ordinators and service users. Having a ring-fenced
budget for direct payments and the employment of a
specialist mental health direct payment support worker
further helped this process.
SPECIALIST MENTAL HEALTH SUPPORT WORKER
As highlighted earlier, all five pilot sites had additional
resources to employ another part-time worker during the
pilot. Three sites employed a specific direct payment
mental health support worker whilst the other two sites
decided to employ an additional generic support worker.
A specialist worker helped implementation up to a point.
It made a difference in helping the support agency to focus
on mental health issues, in enabling greater activity and
promotion and in helping kickstart implementation. In some
cases increased take-up could be directly related to the
appointment of a specialist mental health direct payment
support worker who was able to be more proactive in
promoting direct payments to this client group.
Where a specialist mental health direct payment support
worker was appointed, they tended to take on most of the
mental health referrals and whilst they were usually part-
time posts, it was felt it needed to be a full- time position.
Indeed, because of increasing demand in one Local
Authority resulting largely from the pro-activity of the
mental health direct payment support worker, their post
was increased to a full-time position during the pilot.
However, a specialist worker was not always necessary to
ensure take-up if the local direct payments services were
able to give the necessary time and energy to focus on this
client group. Service constraints, approach and mental
health awareness was more of an issue than the type of
worker employed.Therefore, not having a specialist direct
payment mental health support worker was not in itself a
barrier, but more the inability of the support service to act
independently, proactively and sensitively to mental health
issues.
The pressure of the agency’s general caseloads, training and
referrals meant that many mental health direct payment
support workers were often pressurised into taking on
other non-mental health related work. Given the slow
progress in generating mental health referrals, specialist
workers were drawn into working with other care groups
where demand was greater. This could make the suppor t
service seem relatively cost-ineffective in relation to the
number of mental health clients actually supported.
Actually we have put much more energy into the pilot
than returns in terms of referrals and number of clients.
(Direct payments support worker)
55

In addition, a specialist worker could mean that the team as
a whole did not necessarily have the responsibility of
developing mental health support and procedures. Any
difficulties filling the post or staff sickness could therefore
leave the mental health aspect of the agency vulnerable.
Whilst employing generic support workers did not
necessarily inhibit take-up of direct payments, it could limit
the degree of support offered to mental health clients
which may be necessary in relation to their mental health
needs and concerns.
MENTAL HEALTH AWARENESS
As support agencies were often set up initially to cater for
people with physical disabilities, they did not necessarily
have the ability to understand the specific support that may
be required for mental health service users.
Some of the support work at times has been in actually
educating [the direct payments support agency] about
mental health, which is great in one way, but in another
way I feel it has slightly detracted from the time they
could have spent actually being ‘out there’ with the
services users. (Commissioning Manager)
The direct payments support agency was crucial in offering
support to service users in preparing for their direct
payment package after it had been approved. However,
mental health clients often had a number of difficulties
actually getting their direct payment off the ground
especially if they were to employ their own PA(s).Thus,
sometimes a client’s mental health difficulties required a
particular sensitivity to their support needs that was not
always appreciated within a generic support service61.
Clients often felt that they needed additional support with
preparation over and above what they were offered
through the support service (see Chapter ten for fur ther
details).
Most support agencies were willing to respond to
difficulties and increase their knowledge and awareness of
mental health-related issues. The local pilot co-ordinators
gave some mental health awareness training to the direct
payments support ser vices. However, time and resource
limitations impeded support workers accessing additional
and specific mental health support and training and being
able to offer more support to individual clients.
56
In the absence of direct payments support agencies’
willingness, ability or resources to offer additional support
relevant to mental health clients, some local mental health
groups, advocacy projects, black and minority ethnic
projects, user involvement projects and workers stepped in
to provide additional support to clients. In some of the
sites, a strong user group or user-led organisation helped to
provide some of these functions. For instance, in one area a
local user-led organisation trained some of their
user-workers and volunteers to help other ser vice users
understand direct payments and develop individual care
plans. This helped both in terms of independence and
support and particularly in relation to the lack of awareness
and resources to be able to support specific issues in
relation to mental health. Therefore, this joint work
between the direct payments support ser vice and local
user groups or other mental health-specific organisations
could be beneficial. However, this was also dependent on
the ability and resources of local user groups. In the case
cited, this support was developed as a local independent
initiative that was not built into local implementation plans.
6.8 Other Organisations
48 Department of Health Press release ‘Announcement of Successful Bids
for Direct Payments Development Fund’ 1.8.03.
49 Developing choice, responsiveness and equity in health and social care
“Fair for all and personal to you” – consultation exercise undertaken in
2003 followed by the publication of the strategy paper “Building on the
Best; Choice, Responsiveness and Equity in the NHS”.
50 i.e. assertive outreach teams, crisis resolution, early intervention
teams etc.
51 i.e. graduate mental health workers, gateway workers, STR workers etc.
52 For 2002-2003, a new indicator on direct payments was added to the
Performance Assessment Framework for Social Services, providing a
mechanism for review of progress. In 2004-2005, this indicator becomes
one of the high-level performance indicators for determining Local
Authority star ratings.
53 e.g. direct payment support workers, care co-ordinators, user
involvement workers or advocates.
54 This was often through the local steering groups.
55 For example, finance, pathways, training etc.
56 e.g. adult education, leisure, education, alternative day centres etc.
57 For instance, the examples in previous chapters in relation to
leisure activities.
58 This was relative to the size of the area.
59 For example, queries around eligibility.
60 Such as training about risk assessments, specific brief therapies, crisis
intervention or the Care Programme Approach.
61 Such as memory problems, lack of concentration, motivation,
confidence, anxiety, fear.

NATIONAL POLICY
The key issues discussed here reflect more general policy
issues and concerns. Whilst the expanded use of direct
payments is clearly advocated in recent government policy, it is
unclear how this fits in with other mental health-specific policy
such as the National Service Framework (NSF), the Care
Programme Approach (CPA) and possible changes that may
arise from the proposed reforms of the Mental Health Act.
More specifically, attention needs to be paid to how these fit in
with national changes in the mental health workforce including
the introduction of new approved mental health practitioners,
Support,Time and Recovery (STR) workers and proposed
changes to the role of mental health social workers.
The distinction between ‘health’ and ‘social’ has been argued
as being unhelpful, ‘at odds with the reality of ordinary life’
and can lead to poorly co-ordinated services and can even
be harmful (Glendinning et al 2000c p1). Whilst many
mental health services are working towards integrating
health and social care, there are still numerous ways in
which the health/social care division is maintained, not least
through the current mechanisms of funding community care
services. It is clear that neither service users nor care
co-ordinators can readily clearly distinguish between health
and social care needs. Whilst Government Policy enables
both the contribution of Health Authority monies to direct
payments and the possibility of getting ‘health care’ through
direct payments, it does not stipulate how this could
happen.
It may well be that it is precisely those aspects of care which
straddle the divide between health and social care that will
be the most beneficial and requested support from mental
health service users (see Halliwell and Glendinning 1998;
Glendinning et a. 2000a). It is widely reported for example
that many users would prefer to have various forms of
alternative therapies, psychotherapy etc. than traditional
mental health interventions (Faulkner & Layzell 2000).
Furthermore, it is precisely the ideological struggle about
what constitutes social care needs which often dominates
much debate in mental health i.e. many ser vice users argue
that their needs are primarily social, not medical and require
social, relational and personal support rather than medical
(primarily pharmaceutical) inter vention (del Vecchio et al
2000; Bracken and Thomas 2001). Indeed, direct payments
may help to rectify this balance more in the user’s favour by
enabling service users to assert the social nature of their
distress as opposed to its medical emphasis within
traditional services. In this context, it is worth considering
which aspects of mental health policy may support the
development of initiatives such as direct payments i.e.
‘recovery’- focused policies (Jacobson and Greenley 2001;
Ralph 2000;Turner-Crowson and Wallcraft 2002)
BUDGETS/FLEXIBLE RESOURCES
The relative success of ring-fenced money to fund direct
payments in the National Pilot strongly suggests the need
for more strategic and long-term planning regarding how
direct payments specifically and mental health services
generally are funded.This success may mean that an initial
injection of money to fund direct payments may be useful
in kickstarting the use of direct payments in mental health.
However, greater attention needs to be paid towards
increasing the flexibility of funding services and a greater
flexibility in how direct payments might be used in order to
widen the opportunities for direct payments take-up.This
may require greater attention towards strategies for
investing and/or disinvesting in services.
In addition, greater take-up where direct payment packages
were funded from ring-fenced money suggests that there
was still a lack of flexibility of community care resources to
fund the variety of services that clients need and want. This
is particularly emphasised by the fact that direct payments
were so readily seized upon as an additional source of
funding for clients.
Greater resource constraints and the tightening up of Local
Authority eligibility criteria will have an impact on the
possible use of direct payments. Some commentators have
suggested that due to Local Authority resource constraints,
funding is increasingly focused upon risk minimisation and
securing safety. On this point, Kestenbaum (1999) argued
that ‘the icing on the cake of community care’ such as
household tasks and social activities outside the home are
being ‘squeezed out’ (ibid p53). However, it is often these
tasks that mental health service users value the most and
are therefore likely to want via direct payments
(Hasler 1999).
Furthermore, this very readiness to use direct payments if it
is viewed as an additional pot of money also suggests that
the way in which direct payments are currently explained
and advertised does not necessarily do justice to the
principles of independent living, namely increasing clients’
choice and control which is at the heart of the disability
rights movement for direct payments.
The following chapter concentrates more on practice-based
issues explored through the experience of care
co-ordinators during the pilot.
57
6.9 Discussion

58
KEY FACTORS IN CARE CO-ORDINATORS REFERRING
TO DIRECT PAYMENTS
It has been suggested that one barrier to people with
mental health needs accessing direct payments is that they
tend to have more contact with health professionals such
as CPNs rather than social workers. Health professionals
such as CPNs may be less likely to be aware of direct
payments (Glasby and Littlechild 2002). At the same time,
people with complex mental health needs are more likely
to have some input from social workers. However, as
demonstrated previously, it was just as likely for CPNs to
refer clients for direct payments as social workers. Whilst
any client’s care co-ordinator could refer to direct payments
and this could include occupational therapists (OTs) and
other health professionals, referrals primarily came from
CPNs and social workers.
Overall, care co-ordinators who offered direct payments as
an option to clients were a small minority. Moreover, out of
those who offered direct payments, many workers
considered only a minority of the clients on their caseload
as having the ability to manage direct payments. Only a very
small number of care co-ordinators had really grasped the
principles of direct payments and were generally promoting
it as a positive option to service users.
The likelihood of care co-ordinators considering direct
payments depended upon a number of key factors.These
factors are considered in relation to an individual care
co-ordinator’s approach, their recognition of the benefits of
direct payments and the resources which could be
accessed through payments.
7.1
Key Factors
CHAPTER 7
Gatekeeping
Direct
Payments:
The Role
of Care
Co-ordinators
Currently, care co-ordinators are the key point of access to
direct payments.The willingness of care co-ordinators to
promote, support and enable service users to get direct
payments was a highly significant factor in taking forward or
stalling the progress and uptake of direct payments (Maglajlic
1999; Ridley and Jones 2002). As previously indicated, whilst
the National Pilot made substantial inroads into raising
awareness about direct payments, take-up was still slow. At
the time of the evaluation, care co-ordinators still largely felt
unconfident and uncomfortable with the direct payment
process.
This chapter focuses on the experiences, views and practices
of care co-ordinators who had accessed direct payments for
clients.This offers an in-depth analysis of the day-to-day
practices of care co-ordinators, how they responded to the
challenge and opportunity of direct payments and the
decisions they made with regard to suitability of clients.
Within this context, Section 7.1 summarises the key factors
involved in care co-ordinators referring to direct payments.
Section 7.2 draws broad conclusions about care
co-ordinators’ selection of clients for referral for direct
payments. Section 7.3 explores the issue of widening
accessibility. Lastly, section 7.4 identifies other factors
supporting or hindering care co-ordinators’ consideration
of direct payments. Unless otherwise indicated, interview
extracts are taken from interviews with care co-ordinators.

THE WILLINGNESS AND INDIVIDUAL APPROACH OF
CARE CO-ORDINATORS
Research on direct payments has argued that they are
permeated by an individualised approach and that the
attitudes of individual staff are important in taking forward
progress on direct payments generally and as a result they
can be driven or stalled by key individuals within teams (e.g.
Witcher et al 2000). Evidence from the evaluation support-
ed this position.This section considers the key factors
which were involved in individual care co-ordinators
pursuing direct payments as an option.
Direct payments are a relatively new concept in mental
health and it requires a willingness on the part of individual
care co-ordinators to suppor t clients to take it up as an
option. In a number of cases, successful take-up depended
on the will and pro-activeness of care co-ordinators to
support clients, to pursue the option and to progress it
through to an agreed package. This often meant trusting
that clients would be able to exercise choice and control
appropriately. As one care co-ordinator put it she had to
‘have an open mind about whether it works or not’. Direct
payments support workers often referred to individual care
co-ordinators as being willing to ‘go that extra mile’ and go
‘above and beyond the call of duty’ to support clients to
access direct payments.
At the time of the evaluation, some care co-ordinators
were beginning to see direct payments as fitting into their
professional role in relation to promoting client autonomy
and empowerment and in supporting access to more
appropriate, client-centred services (Witcher et al 2000;
Stainton and Boyce 2002; Stainton 2002). In addition, one
care co-ordinator noted the benefits of direct payments in
relation to her role as an occupational therapist:
Potentially direct payments opens up a whole world to us
– because of the way in which we use activities anyway
– we could use it more broadly. As OTs we pay a lot of
our attention to people’s day-to-day activities, so anything
that helps that and opens up opportunities for develop-
ing that really is great. I do not have any worries that it
would interfere with my work as an OT.
CONCRETE WORKING EXAMPLES
Hearing about actual working cases was one way to help
increase knowledge and awareness of direct payments
amongst mental health teams. Referrals or real working
cases that had gone through the system gave encourage-
ment and generated interest in direct payments by ‘word of
mouth’. In one site, a worker from a local day centre had
seen the benefits for one of their clients from using direct
payments.They repor ted being more positive about direct
payments generally and that this had enabled them to
believe it can work in practice. Two other par ticipants
echoed this point:
People can now begin to point out people who are using
direct payments and this makes a change and has an
influence on the teams.They are now actively aware of
its workability. (Direct payments support worker)
The key is one or two people getting people on direct
payments and then coming back and hearing about it in
the team – and thinking ‘maybe I could get it for some
of my clients’ or if a client comes in and asks for it – if
it’s been discussed and is part of the team thinking then
it’s much easier to think about it.
In addition, where direct payments were beginning to be
used more widely in particular teams, although referrals
were still confined to a minority of care co-ordinators,
some of them felt that direct payments were beginning to
be recognised and utilised as a team resource (see the case
study of a CMHT in Chapter three). Personally relevant
accounts of other people’s success in using direct payments
have been cited as an important factor in implementation
(Holman and Collins 1997; Maglajlic et al 1998). However,
although concrete working examples of direct payments
helped, often in practice this was not enough. Examples
were not always positive and knowledge of practical
examples did not necessarily translate into greater team
awareness and usage:
No, it has not rubbed off on other colleagues yet – they
saw the difficulties I had with it, finding the information
etc. Perhaps they have to go through this process
themselves.
59

Individual care co-ordinators needed to feel that direct
payments would be worth the extra effor t involved.The
benefits of direct payments had to be sufficiently positive
for care co-ordinators to put their energy into to it:
I think a lot of care co-ordinators probably see it in the
sense of, if it's something you have not done before, you
can’t really see the benefits. I think people are sceptical
and I think until they actually see it actually working, and
the benefits from it, I think they are going to be a bit,
you know, sitting on the fence a bit.
THE LURE OF ‘EXTRA’ RESOURCES
As previously suggested, a major factor in care
co-ordinators deciding to pursue a direct payment for
clients was because they thought it was a separate,
additional pot of money they could access for clients.This
was partly fuelled in some sites by ring-fencing part of the
community care budget for direct payments packages
during the pilot.
I’m not saying they should not be given a choice, but I
think the reality is it will get taken up much more to the
extent that it’s a way of getting something that’s not
available any other way…stuff that’s needed in addition
to what they’re getting at the moment, something over
and above that.
In the area where take-up increased most significantly, this
was attributed to care co-ordinators’ raised awareness of
the ‘additional pot of money’ that they could utilise for
clients. This awareness of the ‘extra money’ in direct
payments came from the direct payment support workers
and senior practitioners. One direct payments support
worker recalled how during regular presentations to
CMHTs as soon as the fact that money was ring-fenced
was mentioned ‘you can see them change, their ears
prick up’. Care co-ordinators themselves were clear
about this too:
[The direct payments support worker] came down and
talked to us about direct payments and we all got very
excited about it. Partly about money, partly about
empowering users, and also about taking the pressure
off the CMHTs, because you see we’ve lost a lot of our
community support workers.
60
In turn, this raised awareness of the existence of the pilot
and care co-ordinators felt that if they did not use the
money available for direct payments it would be wasted.
The team manager mentioned it again at one of our
team meetings. Basically he was saying there was
money available and they were looking for suitable
people who might benefit from it and that we could be
creative and flexible in how we could use it. This meant
the team were much more aware of it as a resource for
us, and that basically, the money would be lost if it was
not used. That was a bit of a turning point I think.
I am keen to sort of pursue it with clients, if they are
willing to do it, because at the end of the day, there is
not any other money, or a way of getting things in for
people. Anyway we’re always desperately looking for new
ways to fund activities and find money for things for our
clients.
Paradoxically, the confusion and misunderstanding about
direct payments could, in a small number of cases, actually
help the process.Thus, one CPN recalled that had he
known that the money came out of the general community
care budget and about the paperwork involved, he may not
have pursued direct payments. Although doing so had
resulted in a direct payment package with which both he
and the client were happy.
The provision of incentives, such as the lure of potential
extra resources, might help care co-ordinators begin to
engage with direct payments. However, in order for this to
continue, the findings suggest that the additional benefits for
clients must become apparent. In addition, they indicate that
care co-ordinators need to develop a greater understand-
ing about the funding and underlying principles of direct
payments.

Care co-ordinators were generally positive about the idea
of direct payments. They recognised their potential in giving
clients greater independence, responsibility and a far greater
choice. They were also acutely aware of the limitations of
services and felt that direct payments could be both
empowering for clients and a more creative way of
developing care packages. However, despite this, many
questioned how possible it would be for direct payments
to work in practice, particularly for the majority of their
clients.
Yeah it sounds great in theory but in reality how
feasible/workable is it?’
In the absence of service users asking for or demanding
direct payments, the impetus for direct payments has been
left to care co-ordinators. The following extracts clearly
demonstrate that care co-ordinators make decisions about
who they think are suitable for or capable of receiving and
using direct payments:
Primarily I have just mulled it over myself first and not
necessarily brought it up with them – I think about
whether or not it would benefit the client more than it
does at the moment.
To be honest, clients have been picked by me rather
than clients choosing it themselves, which I suppose, is a
bit of an issue. I think in general people will look at
their case load and only consider people who they think
it would work for and not really give people the choice
or ask them first.They do this as an informed decision
for good reasons, but perhaps they rule out more people
than perhaps would be possible if they were given the
option. A lot of this is based on good practice decisions
but could be made on assumptions.
Of the minority of care co-ordinators who did refer, most
felt that direct payments would only be appropriate for a
very small number of clients on their caseload due to
particular circumstances. Care co-ordinators used a variety
of criteria to make decisions about suitability, often based
on an individual approach as well as their particular
caseload. However, there were particular patterns identified
in relation to the characteristics of clients to whom direct
payments were offered.These characteristics are
summarised as follows.
HAVING A ‘SIGNIFICANT OTHER’
If the client did not have a significant other or was not
considered able to manage on their own, they were less
likely to offer direct payments or to refer them. However, in
a minority of cases, a client’s lack of close relationships was
considered a reason to pursue direct payments as it was
felt that direct payments could help enlarge the client’s
social network.
PAST WORK EXPERIENCE
Having past work experience increased the likelihood of
referral, particularly where the experience was seen as
relevant to direct payments62:
If it’s someone who’s used to working and stuff and then
they got ill then maybe they could manage. But if they’ve
never worked, which many of our clients have not, then I
think they’ll need support on a day-to-day basis to
manage it.
STABILITY OF LIFESTYLE/TRUSTWORTHINESS
A number of care co-ordinators felt that they would be
more likely to offer direct payments to clients who they
thought were more trustworthy. This often involved having
what they considered to be a stable lifestyle.
She was quite competent, more so than most of our
clients…She was able to manage her own money, run
her life, she was quite organised, not chaotic like a lot of
our clients. She was clear about what she wanted and
good at getting what she wanted. She’s good with money,
straight and honest.
Some people I would not discuss it with because, either
they really could not manage or because they’ve got like
acute substance misuse problems and I’d worry that they
would squander the money. If I do not trust them I
suppose that’s what it’s all about really.
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7.2 Key Factors in the Selection of Clients

Conversely, care co-ordinators were less likely to offer
direct payments to clients if they were worried about them
using the direct payments money inappropriately,
particularly when ‘unwell’:
I would be worried that some of my clients, without
being flippant about it, might benefit from a direct
payment and they may want it, but then they might not
spend it on what it’s meant to be for. I’d worry whether
it would be squandered on like alcohol for example. I
know this may be a sweeping generalisation but it’s an
honest worry.
Such decisions could also involve other factors such as the
skills and other abilities that clients were seen to have,
particularly in relation to employing people:
I take on board whether they have got the skills to work
with another worker, that they are not anti-social people,
that the gap in their lives is all about another person to
do things with and that they have already got ideas
themselves and are very clear about what they do and
what benefits it will bring to their lives to have that
flexibility choice over what they do.
ARTICULATE
Care co-ordinators were more inclined to seek direct
payments for clients who were more able to express their
needs and clarify the types of support arrangements they
wanted. The care co-ordinator below pointed out that this
was an important factor in the client that he had supported
to access direct payments:
She is very articulate, anyway, you know, she is well able
to do this… that was kind of why I thought about it,
because I knew that it was something that she would
cope with…I knew it's something that she was well
able to do.
END OF THE ROAD
Somewhat paradoxically, clients with needs that were
difficult to meet within existing services or people who the
care co-ordinator felt had gone ‘as far as they can’ within
existing services may be offered direct payments. For
example, clients who were seen as difficult to engage, had
particular and complex or cultural needs, or were more
demanding on services, were sometimes offered direct
payments. In addition, as the following care co-ordinator
argues, direct payments might be considered if it is felt that
services are no longer meeting their needs and they need
something else:
62
Direct payments might be good if clients are not getting
any better than they are now. I think that it would be
good once people have got through an acute episode
and perhaps have gone as far as they can and they are
quite stable and not going to improve much more and
they are as mentally well as we can get them.
CLIENTS WITH ADDITIONAL/UNMET SUPPORT NEEDS
Where a particular resource was identified as an ‘unmet’ or
additional need for a client and was not available or
fundable by any other means, care co-ordinators were
more likely to pursue a direct payment as an alternative
means of funding.
I’ve only referred the one client, he had really high
physical and mental health needs and I thought the
more we could sort of support him the better really.
No one else really stood out like that.
I was aware of direct payments…but it was not until I
identified a need that was not being met in a particular
client that I kind of then thought about direct payments.
If I could have had those needs met within the existing
services, I probably would not have had changed over, it
was only because I felt they were not being met within
existing services that I thought it was worth pursuing
that provision to see if they could be met in that way. I
think this has not happened with clients of other
members of the team…so while their needs are being
met adequately within these services, you just tend to
continue having them met in that way.
THERAPEUTIC PROGRESSION
Over and above this, there were a variety of clients who
were felt would benefit ‘therapeutically’ from receiving
direct payments. Such benefits were seen to include
negotiating relationships/boundaries, developing greater
individual responsibility, promoting independence, facilitating
social contact, combating loneliness and social isolation.

It is clear that direct payments are often pursued for either
‘positive’ reasons such as a client’s perceived potential and
competence or ‘negative’ reasons such as the inability of
services to meet their needs. Such reasons may facilitate
access for particular clients yet may limit access for others63.
Similarly, those who are not viewed as needing ‘extra’
support or who do not arise as a particular ‘difficulty’ may
be less likely to be considered for a direct payment because
they are considered to be content with services. The
analysis suggested that direct payments were often seen as
a ‘way out’ or a means to provide a service when there
seems to be no alternative.
If a direct payment had worked well with one particular
client there was also a tendency amongst care
co-ordinators to look for other similar clients on their case
load rather than considering it as an option more
generically.
I have been encouraged by my experience and I would
do it again. I would not hesitate if someone else similar
came along.
Likewise, care co-ordinators often had particularly fixed
ideas about what direct payments could be used for.
They often thought that direct payments were unsuitable
because ‘that sor t of care’ was not necessary or
appropriate. This could mean that it was difficult to fully
grasp the idea of direct payments as being the client’s
decision about how they decide to meet their needs.
There were a small handful of care co-ordinators who
were starting to become aware of the selective criteria
they were using. These practitioners were looking at how
they might begin to consider clients as ‘willing and able’
with appropriate support:
Although I think maybe it shouldn’t be, I do think that
one of the criteria I would apply, is whether the client
already has someone around that could help them
manage the direct payment, and if the client was not
able to manage on their own then perhaps I’d be less
inclined to refer them. I suppose really I should be
thinking ‘lets find a way of supporting the client and
then refer them’.
I was subconsciously thinking people would be
appropriate if they had a carer or someone else in the
background to help them manage it etc. I’m going to
rethink that.
Some were beginning to consider the option of direct
payments for many of their clients rather than just selecting
people out:
I’m sifting through my caseload gradually, what I will do
is every other week probably, as I go out to clients and
assessing it myself and being careful, looking at their
background and think about it. I’m going through every
one of our clients each time and look at what’s stopping
them and it’s usually nothing to do with the client being
capable, it’s the people around them…but that does not
mean I would not pursue it… I try and not make the
assumption that people are not capable of doing it.
What seems to be necessary in order for this shift to
happen is the realisation of additional and wider benefits of
direct payments related specifically to the enhanced choice
and control at the heart of direct payments. Thus, if a
direct payment was offered just as a means of getting a
service, the benefits of actually getting this ser vice through
direct payments may become apparent. In turn, this may
result in care co-ordinators considering direct payments
more generally. As one care co-ordinator pointed out:
What happened with the second client I referred…
I could actually have met her needs in-house, but I
thought that direct payments would be a better way for
her in doing it in terms of the challenge it would give
her really and the control, the empowerment the
responsibility and all of that.
63
7.3 Widening Accessibility

Care co-ordinators identified a number of other crucial
factors which affected their willingness to consider and
pursue direct payments as an option. These are
summarised under the headings of ‘workload’, ‘paperwork’,
‘preparation’, ‘crisis work’, ‘staff changes’ and ‘service-driven
assessments’.
WORKLOAD
Although I’d like to think I would push direct payments,
in reality pressure of CMHT work is vast so even with
the best will in the world it’s hard.
The fact that direct payments are a relatively new
procedure meant that it required additional effort and time
to find out about the process, to do the paperwork, to
think it through thoroughly with a client, to set it up and to
monitor progress.This was seen as an additional pressure
for care co-ordinators who already felt overburdened. By
implication, this made it hard for care co-ordinators to fit
direct payments in with other priorities and demands on
their time and to incorporate it into their daily practices.
It’s just not something we’ve considered in mental health
up until now, and because people are overstretched,
there’s not the energy or the time for people to get their
heads round it at the moment. It’s something I would
like to use, but it’s difficult getting to grips with
something new, when you have got those other
pressures.
Care co-ordinators had a range of experiences in relation
to the actual process of direct payments. However, all
found that in practice, at least initially, it required more
energy and input from them to set up.
64
PAPERWORK
Most care co-ordinators already felt that there was too
much bureaucracy and paperwork in their job. Whilst
paperwork is required for any commissioning of services, in
practice accessing direct payments for clients did require a
fair deal of additional paperwork64.However, whilst
co-ordinators found it reasonably straightforward and
smooth, others found it an extremely complex and difficult
process to work through. A few described the paperwork
involved as an ‘absolute nightmare’.
There are so many processes people get tired.We
recently worked out that when we first meet a new
client we have to fill out 14 forms! People get really
bogged down with all this and direct payments can
seem like more.
I have thought about 2/3 other people….But I have not
pursued it, selfishly I suppose because of the amount of
time and energy I would have to put into setting it up. I
know it would require a lot of input from myself.
Some found the paperwork was unclear, lengthy and full of
jargon.
It was hard to get the info I needed and more
information was not really available. I could not find
anyone who knew about the system and those who
should have known more did not. My team manager did
not really have the information.They found out what
they could but it was down to me really. So I had to just
find out the info as I went along.
Those who found the process complex and overly time-
consuming recognised that this significantly held up the
process. However a number also recognised that if they
regularly reviewed clients’ care packages anyway it should
not necessarily be an additional work burden:
There seems to be lots of additional work panels, writing
reports etc. But then I suppose you have to do this
anyway and if it is part of everyday practice and if you
start every time at the beginning with people and do this
as a matter of course then I guess it should not really be
too much more work.
7.4 Other Factors

PREPARATION
Care co-ordinators also recognised that there was often
insufficient time available to fully involve the client and
prepare them for the task of receiving and using direct
payments, particularly if it involved employing their own PA.
Thus just ‘ticking a little box’ at the end of a CPA form or
needs assessment was not seen to do justice to the often
lengthy process of developing a direct payment.
Although most direct payments had only been in operation
for less than a year, the majority of co-ordinators spent as
much time, if not more time with their client as they had
done before the direct payment. However, care
co-ordinators reflected that the quality of time spent with
their client often increased as they were more able to work
specifically in their role as care co-ordinators especially if
the direct payment had alleviated some of the extra
support needs that clients had.
It's one of those things you’ve got to put the work into at
the beginning initially, to get it up and running. Once it's
done you can see the benefits, so there's not been any
disadvantages at all, apart from just taking a bit more
time to set it up. Yeah, it's all been beneficial really,
definitely.
However, the increased support that care co-ordinators
offered clients to help them access direct payments may
result in limitations in terms of how many clients they could
refer and support.
It’s been really time consuming and a lot of hassle…
It’s off-putting ‘cos it’s more work. Our work is based on
client load not the amount of input therefore the quality
of support we can offer may suffer. Ultimately it could
deter you from doing it – it comes to a point when you
just can’t take any more on. If things don’t change we
could not physically take on any more.
CRISIS WORK
Care co-ordinators do not seem to treat it with any
priority, they’re too tied up with responding to emergency
cases that the direct payment referrals go to the bottom
of the pile and stay there, until a problem arises and
then they might respond to it. (Direct payment support
worker)
A specific pressure that care co-ordinators experienced
was in relation to the crisis response aspect of their work.
Care co-ordinators experienced an acute tension in
responding to short-term crises as opposed to developing
planned and longer-term work.This often meant that ‘good
ideas’ which were not seen as urgent, such as direct pay-
ments, were often sidelined and not prioritised. Because it
was generally felt that direct payments would be most
suitable to those clients who are relatively ‘stable’ in terms
of their mental health needs, these clients were frequently
not those experiencing a crisis and therefore taking up the
care co-ordinator’s time:
In reality, when you’re working with thirty/forty clients
and you need money here and now obviously it’s great if
you have got the time and the capacity to pursue it.
Obviously we try and work holistically and look at people
as a whole. But often we need money now, we’re
dealing with a crisis, the very nature of our clients are
very severe and enduring…people do not see it as a
priority, because we rarely get to the point where we can
sit back and everything is hunky-dory and everything is
ticking along, it’s usually crisis, it’s been fire-fighting a lot
of the time. You need that level of stability in a way to
even approach the subject of direct payments.
65

STAFF CHANGES
Against this background, sites experienced a high level of
staff changes and sickness at the individual care
co-ordinator, direct payment support agency and
management levels. In one Local Authority, the direct
payments support worker reported that in 80% of referrals
to direct payments, the client’s care co-ordinator had
changed during the time it took to process the application.
This often meant that the application process could be
delayed, that clients could be left without a care
co-ordinator or that when a new care co-ordinator was
appointed, direct payments were no longer considered a
priority.
There has not been one case that I have worked
alongside that has actually gone through the process
from initial referral to actually somebody getting a direct
payment, that there has not been a fluctuation of care
co-ordinators that have been involved.
(Direct payments support worker)
SERVICE-DRIVEN ASSESSMENTS
Care co-ordinators often had very limited conceptions
about the potential use of direct payments. Assessments
were still often dominated by a ‘ser vice-driven response’
with implications for services being tied to care
co-ordinators’ perceptions of what was available rather than
what the client needed or wanted to meet their needs.
Actually I do not think we're utilising direct payments as
best as we could be…that's because people have
resorted to the same old procedure, because that's what
they know.
Te nsions emerged between the care co-ordinator’s role in
developing a client’s care plan based on a needs-led
assessment and imperatives to gatekeep resources through
the application of eligibility criteria (see Dowson 2002;
Salisbury 1998). This tension has often resulted in what
Dowson (2002) has referred to the way in which care
managers ‘talk down’ clients’ expectations to enforce a ‘fit’
between what the service user needs and what is actually
available. This practice still frames the way that assessments
are carried out in terms of culture, mindset and imagined
possibilities.
It’s all about keeping costs down – the cheaper it is the
more likely it is to be agreed. It’s the hard sell really.We
have to leave our social work hats behind and basically
become a lawyer, and an accountant, you have to have a
business head on ‘sell sell sell’.
66
Therefore, when resources are limited, care co-ordinators
have to make difficult decisions about priorities (see Lipsky
1980). What service users may request via direct payments
may seem to be ‘fanciful’ in relation to other seemingly
more urgent needs. This was most clearly illustrated when
care co-ordinators questioned how a client would want to
use a direct payment to meet their assessed need:
We have had difficulties at the care co-ordinator level,
where they thought a package would be a good idea
and they could see that direct payments might be a way
of using and empowering the client, but because of
priorities and pressures on budgets and resources and so
on, they felt that that person was not actually eligible
when it’s come to what the person is going to use it for.
It’s been ‘well that does not meet our eligibility criteria,
so although you as a person do, because you have
needs, the way that you want to use it to meet your
needs, does not’. So sometimes it’s actually stopped at
care co-ordinator level because they have somehow
decided that it’s not very suitable.
(Mental health service manager)
Where most successful, care co-ordinators were thinking
more creatively and moving away from service driven
assessments and were committed to facilitating more
person-centred and needs-led and self assessment tools:
It was an opportunity to just basically look at her needs
rather than trying to fit that in to some kind of service.
I see the assessment as being really important to get
clients to describe their difficulties in their own words
and try to capture their understanding and help them to
do this. Direct payments fits in well with this ‘how I see
my needs’ form.

A wide range of factors has been identified which mediated
care co-ordinators’ pursuit of direct payments as an option
for clients. This discussion highlights some key issues for
further consideration.The findings here build on previous
research which has reported that care co-ordinators’
concerns about eligibility and their lack of awareness that as
much support as needed to manage a payment can be
offered, has an influence over whether direct payments are
even considered, let alone offered to mental health service
users (Ridley and Jones 2002). Ridley and Jones (2002)
maintain that one of the most effective ways of promoting
direct payments was through word of mouth and through
involving recipients of direct payments speaking to other
users about their experiences. It was too early to repor t
on whether this had started to happen in the pilot sites
although in a small number of cases recipients’ satisfaction
with direct payments has generated a few referrals.
Ultimately, the impetus for direct payments needs to come
from service users. Without the knowledge, awareness of
and demand for direct payments coming from clients,
access will be dependent on care co-ordinators’ discretion
about who they think would be suitable for direct
payments.
It’s so much work but if the user asks for it, it’s harder to
ignore, we’d have to do something, we’d be more likely to
pursue it.
In the absence of this shift, the ongoing confusion care
co-ordinators have about direct payments and the selective
criteria they apply, raise questions about training and
supervision strategies to ensure that care co-ordinators are
conversant with the principles, practicalities and processes
of direct payments. The evidence presented here suggests
that there is often insufficient opportunity for sharing and
learning within mental health teams which might facilitate
greater consideration of direct payments. This suggests that
effective implementation requires greater attention to
development at the practice level in relation to:
●Creating more spaces for reflective learning and
practice and the importance of ongoing supervision
in relation to creating new ways of supporting care
co-ordinators to develop creative care packages.
Encouraging dialogue and debate through peer-
mentoring supervision, action learning groups, clinical
supervision, co-working etc. (Clark and Spafford
2002).
●Moving away from service-driven responses and
developing practices to support this (for example,
self assessment tools).
●Approaches which embrace risk-taking, person-
centred planning and creative thinking.
●Developing shared objectives within teams which
relate to maximising clients’ choice and control.
●A positive and open-minded attitude focusing on
the potential of direct payments and
longer-term benefits.
These practices are necessary in order to counteract the
barrier of care co-ordinators talking down clients’
aspirations in relation to a more pervasive service and
resource-driven response. In turn, this relates to the
tension identified for care co-ordinators linked to their
gatekeeping responsibilities (see Salisbury 1998; Dowson
2002). Individual care co-ordinators did extend their
practice beyond the limitations of their conflicting role in
order to offer additional preparatory support to individual
clients. However, it was unclear how much this was
considered part of their role.Thus, the reflection that care
co-ordinators need to be willing to ‘go the extra mile’
implies that more generally care co-ordinators saw direct
payments as something that was outside their remit.
However, if care co-ordinators are to continue to have this
gatekeeping function, this is problematic in terms of
widening accessibility.
67
7.5 Discussion

As time for independent planning65 is not ‘built in’ to the
way needs assessments are carried out, it depends on the
will of individual care co-ordinators to be prepared to
develop their role in this way.The evaluation strongly
suggests that a crucial element in the increased take-up of
direct payments was the assertiveness and persistence of
local care co-ordinators in enabling clients to take up the
option of using direct payments. However, more generally,
limited local resources will make these decisions increasingly
difficult. In part, the ability of other local agencies to offer
support to clients in accessing direct payments will also
determine the extent of progress.
This discussion raises the need to clarify the role, function
and contribution of direct payment support services in
providing this support. It also specifically raises key
questions about the allocation of roles and responsibilities
in relation to assessment and promotion. It may be that
mental health direct payment implementation will be more
successful if direct payment support agencies were explicitly
assigned and adequately supported to provide these
functions, such as support with assessment and individual
planning. As previously highlighted, the varying extent to
which the direct payment support ser vices acted across
different sites in relation to their pro-activeness,
independence and early intervention suggests that their
roles and function are not necessarily clear and adequately
defined in relation to care co-ordinators.
68
It has been suggested that assessment for direct payments
requires a new relationship with users, a new approach to
allocating community care resources, including provision for
self-assessments (Hasler et al 1999), and community care
assessments that are dynamic and person-centred (Ridley
and Jones 2002). It is significant that this analysis outlines
the positive contribution of the direct payments support
workers in this regard, especially in assisting clients with
assessments and planning packages. It implies that the role
of direct payments support workers may be more
conducive to working in a person-centred/ needs-led way
than care co-ordinators who would otherwise perform this
task. This may relate to the tensions and conflicts
experienced by care co-ordinators in their role in that they
are often gatekeepers to resources, service providers as
well as responsible for individual needs assessments.The
pro-activity and independence of the local direct payment
support services, their early intervention and assistance in
supporting needs-led and self-assessments can go some
way to addressing these difficulties and would bring us
closer to the independent planning model advocated by
Dowson (2002).
Having considered the mediating role of care co-ordinators
in facilitating access to direct payments, the next chapter
explores in greater depth the concerns and issues care
co-ordinators raised about implementing direct payments
for people with mental health needs.
62 In particular, work experience in the caring professions or in business.
For example, one client had been an accountant.
63 For example, those without a ‘significant other’.
64 For instance, additional paperwork to complete financial assessments,
written agreements and as part of recording regular reviews.
65 ‘Independent planning’ is a process whereby clients have an opportunity
to develop a proposal for their own care package with the support of a
trained broker, someone who is independent from the funders and
providers of community care services.The package is then presented to
social services for funding agreement.This prevents care managers/care
co-ordinators gatekeeping resources and access to direct payments and
reduces conflict inherent in the role of care managers being both
assessors and service providers.

Previous research has indicated that care managers have a
number of specific and general anxieties and concerns
about direct payments, particularly about their clients’ ability
to manage direct payments. Carmichael and Brown (2002),
for example, reported a huge fear factor on the part of
care managers. These concerns can be par ticularly acute in
mental health (Witcher et al 2000; Ridley and Jones 2002).
Despite training, support and information these anxieties
and concerns are not easily alleviated.
It has been argued that professionals with no direct
payments users on their caseloads are more likely to be
under-confident and reluctant to pursue direct payments
due to a lack of experience in setting up direct payments
(Witcher et al 2000; Stainton 2002). As indicated, the
evaluation concentrated on care co-ordinators who were
working with clients who had used direct payments. Whilst
their concerns were lessened by this experience, they still
expressed a number of key considerations in relation to
widening implementation.This chapter highlights some key
issues that professionals, predominantly care co-ordinators,
thought hindered implementation.
Overwhelmingly, care co-ordinators who referred clients
onto direct payments expressed a range of concerns about
how direct payments would work in relation to their
clients, the majority of whom were people with severe and
enduring mental health needs. Most thought that these
concerns would make take-up extremely difficult and were
often very pessimistic about the possibility. To a large
degree their concerns echoed those raised across care
groups (Dawson; 2000; Hasler et al 1999;Witcher et al
2000). However, analysis of the data suggests that these
concerns, whilst not necessarily being more pronounced,
certainly raise specific mental health issues and concerns
that require careful consideration. These concerns need to
be addressed because they often result in negativity,
scepticism and an unwillingness to consider direct
payments as an option.
69
CHAPTER 8
Implementing
Direct Payments
in Mental
Health Issues
Raised by Care
Co-ordinators

Many mental health professionals have been ver y tentative
in approaching direct payments in part because it is seen as
‘uncharted territory’. Direct payments were described as
requiring a ‘massive leap of faith’ and the difficulties
discussed here often resulted in care co-ordinators not
being prepared, able or willing to pursue this option.
A lot of it is about the care co-ordinator having the
confidence to actually take that step to a direct
payment. (Direct payments support worker)
Therefore, in view of the significance of these issues in
relation to care co-ordinators’ consideration of direct
payments, this chapter presents and discusses the
implications of these dilemmas for the implementation
process. It is important to note that these were concerns
raised by care co-ordinators who had referred onto direct
payments and were therefore engaged in the process.
Section 8.1 looks at general concerns in relation to clients’
mental health issues. Section 8.2 considers the dilemmas for
care co-ordinators associated with managing their
responsibilities towards their clients in relation to their
mental health needs. Section 8.3 highlights concerns which
were expressed about the support that clients may require
for them to be able to manage direct payments. Section 8.4
summarises the issues participants raised in relation to
clients employing their own PAs. Unless otherwise stated,
all interview extracts are taken from interviews with care
co-ordinators.
70
Care co-ordinators and other par ticipants frequently raised
questions about the existence of more complex tensions
and dynamics in relation to setting up a direct payment in
mental health including more considerations in relation to
‘therapeutic’ concerns and perceived benefits. In physical
disabilities, for example, professionals felt it was clearer what
support and assistance someone needed in order to gain
greater independence. This was because the independence
disabled clients needed could be more easily distinguished
from mainstream services which may not be able to offer
the flexibility needed to accomplish such objectives as going
to work, college or take part in leisure activities. Whereas
clients’ mental health needs were seen as more nebulous,
changeable and harder to define. By way of illustrating this
point, one care co-ordinator relayed her concerns about
how this may affect employing PAs:
The main problem is that it’s very hard to sort of clearly
define the role [of a PA].You can with physical problems,
where someone might need help getting up on her feet
and I mean that is relatively easy…but it’s very difficult
to define exactly [how a mental health problem] is
affecting somebody and exactly what level of support
that they need and so I think the sort of selection, the
training, and the support of that personal assistant I
think is difficult, and I think it’s difficult also to try to be
fully aware of what those difficulties are.
Many staff members expressed concerns about how users
would be able to manage and benefit from it, particularly
when they are ‘unwell’. This would be when they would
be at most in need of a service and yet they may not nec-
essarily, at that time, be able to control and direct it in ways
that would be most beneficial to them because of their
mental ill health. The possibility of using tools such as
advanced directives, whilst helpful, did not necessarily allay
these fears.
CAPABILITY AND CAPACITY
Care co-ordinators expressed specific concerns about the
perceived compliance, capacity and competence of mental
health service users to set up, manage and benefit from a
direct payment.
A lot of our clients lack capacity. So to even introduce an
idea like that especially with clients that are quite
paranoid and delusional, the whole idea, well you just
would not even approach it, to be honest you know, even
though there may be a need, it would be just impossible.
8.1 Mental Health Specific Issues

Clients’ perceived lack of capacity was related to a number
of factors, namely:
●Emotions such as fear, anxiety, paranoia, panic may
make engaging with the complexities and
responsibility of direct payments difficult. Whilst
emotional difficulties may be expressed across all
care groups, care co-ordinators considered that the
severity and intensity that these are often
experienced by mental health service users made
this issue particularly acute.
●Social isolation. Care co-ordinators repor ted
that the majority of their clients were particularly
socially isolated and did not necessarily have
‘significant others’ who may be drawn upon to
support them to set up and run a direct payment.
●The experience of long term mental health
difficulties as well as the side-effects of
psychiatric medication was seen as contributing
to difficulties with concentration, memory and
motivation as well as to vulnerability, a lack of
confidence, self-esteem and assertiveness.
●Par ticipants made reference to the fluctuating
and unpredictable nature of many mental
health difficulties,in particular the onset of acute
crises, as making organising direct payments difficult.
●Awareness and insight. Once in the middle of a
mental health crisis, clients may not necessarily be
aware of the support they require and may turn
down the support they might need.
●Care co-ordinators thought that inappropriate
behaviour, potential risk of suicide and
dangerous behaviour made consideration of
direct payments less likely.
These factors made many care co-ordinators feel that
clients would be ill-equipped to manage the money and the
paperwork and/or to employ a PA, to decide and direct the
support they needed. In practice there are various ways in
which clients could be supported to manage the payments
e.g. some recipients used their PA to help them with the
paperwork.
As we have seen, the option of direct payments threw up
many concerns about the question of ongoing responsibility
for clients’ care. Some care co-ordinators felt that the lack
of structures and controls over how clients use their
payments made their duty of care difficulty to resolve. For
example, this was raised in relation to the possibility of the
user being left ‘without a ser vice’ if their own support
arrangements broke down or if a difficult incident occurred.
Other professionals also raised questions about the equity
of direct payments, in that it may enable a minority of users
to gain greater levels of services, flexibility and choice whilst
the majority would be stuck with inadequate and
under-funded ser vices. This concern has not just been
raised in mental health and not just about direct payments
but has also been raised in relation to other developments
such as Person Centred Planning in the learning disabilities
field. More generally, this suggests that issues of equity need
to be set within a wider context of a cultural shift in and
challenge to traditional models of ‘care’ and ‘responsibility’.
DEPENDENCY
One specific concern raised was about the potential of
fostering dependency. Paradoxically, although direct
payments are ostensibly about facilitating ‘independent
living’, some participants worried that direct payments
might inadvertently create or reinforce clients’ dependency
on needing support. During the pilot, a small number of
direct payments packages were actually turned down partly
because it was felt that a direct payment would encourage
the client’s ‘institutionalisation in the community’. Unlike in
some other adult care groups, care co-ordinators
sometimes thought that a service user’s mental health
could and should improve such that they would no longer
require mental health services, in whatever form. Thus, the
aim of services should be to help the client ‘move on’ when
they are well enough and not become trapped in a
dependent ‘mental health career’ where they feel like they
‘need’ help and assistance, rather than having the confidence
and self-belief to move away from services. These are
reasonable concerns and goals, and the tension between
dependence and independence needs to be kept in mind.
However, it is also wor th noting evidence from literature
on Assertive Outreach which suggests that, at least with
people with profound and complex mental health needs,
longer-term and ongoing support may be essential to
prevent ‘relapse’ (Stein and Santos 1998).
71
8.2 Responsibility for Client Care

In addition, although direct payments are often conceived of
in terms of promoting greater social inclusion and
participation in ‘normal’ community and social networks,
some professionals felt that service users may become
more socially isolated through direct payments. They
expressed concerns that direct payments would only
facilitate an unreal sense of social life because they may
then be dependent upon the provision of a paid PA.
NON-COMPLIANCE
Another concern related to the possibility of users
disengaging from services, and from support set up via
direct payments. This is perhaps the ‘flip’ side to the
concern about dependency. It is related to professionals’
concerns about users ‘non-compliance’ with services and
was linked to clients’ ‘denial’ of their mental health
difficulties, particularly during periods of heightened mental
health conflict. For example, some care co-ordinators
reported that clients were not receptive to direct payments
because they did not accept that they needed any support.
Ironically, a number of professionals wondered whether
those most in need of services would be viewed as least
likely to be able to manage a direct payment precisely
because the client was not aware of the support they
needed:
They may actually be more eligible for direct payments
if or when they are most resistant to it and yet if they
are receptive to it, do they really need it? (Mental health
service manager)
72
Responsibility and managing the paperwork was a specific
worry that many care co-ordinators identified in relation to
clients’ difficulties with accessing direct payments.
You are talking about somebody’s ability or their inability
to manage money. Because they are so debilitated by
their illness they can’t actually look after themselves and
they often can’t manage money, so that is a major
stumbling block. Also service users’ inability to control the
process - whether that’s because of the side-effects of
their medication or the very nature of their illness - they
will not be able to control the money used for direct
payments and they’re often scared of the paperwork.
As indicated in the previous chapter, care co-ordinators
were more likely to consider clients suitable for direct
payments if they perceived clients as having a relevant
support network. The direct payments legislation states
that clients must be considered willing and able alone or
with assistance. This often means in practice that clients’
carers and/or par tners or family/relatives provide the
assistance necessary to enable clients to use direct
payments. Echoing a previous point, care co-ordinators
often identified their clients as lacking the social networks
that could be drawn on in this way.
It may be hard to clients to access direct payments
without a lot of support, especially if they are isolated. If
they had a carer or something in the wings perhaps they
could manage but many of them have not got that.
Many people live alone.The only way this could be
achieved is with a lot of help.Without the positive input
from immediate carers, they would need someone on a
day-to-day basis to do this.
8.3
Support to Manage Direct Payments

KNOWLEDGE, EXPERIENCE AND SUITABILITY OF PAS
One of the most frequently voiced concerns by care
co-ordinators who par ticipated in the evaluation related to
how their clients would be able to employ their own PAs
via direct payments. Some expressed concerns over
whether PAs would receive any training or external
supervision. In particular, this was associated with the often
‘emotionally draining’ aspect of mental health work. In
addition, some questioned how feasible it was that the PA
would not share any information about clients with others
given the perceived risk element in much of their work.
Some workers also expressed anxieties that their clients
were often very vulnerable and may suffer abuse from
potential unscrupulous PAs or vice versa. Indeed, one care
co-ordinator admitted that she ‘sabotaged’ the direct
payments because she was worried about risk issues for
the worker going in. As a consequence, many felt that they
would need to monitor and supervise this process.
This potential difficulty was one contributing factor to care
co-ordinators not exploring direct payments as an option
because they did not feel they could trust the quality and
expertise of any PAs that the client would be able to
recruit.
The key seems to be choosing the right PA. However, our
clients are very vulnerable. Ideally they would employ
someone who they already know are responsible and
trustworthy, but many people do not know that many
people. The usual practice in ILCs seems to be to put an
advert in a local shop – which does not seem sufficient
really for complex mental health needs. I would need to
get really involved in that as clients would not be able to
process this themselves so it would be time-consuming.
Quite honestly this has often held it up a bit. I’m sure
there’s an element of overprotectiveness here but…if
there were any risk I would not go down that road e.g. if
it was a case of employing someone who I did not know
then I’d would be very cautious.
The reluctance of care co-ordinators to pursue direct
payments was particularly the case when clients had very
complex mental health needs which raised concerns about
‘risk’ and confidentiality in relation to the client themselves
or the possibility of inappropriate behaviour in relation to
others. These scenarios meant that care co-ordinators felt
that to hand over such responsibility might put into
question their duty of care and may constitute negligence.
Given a prevailing culture of risk aversion within mental
health services, this was seen as even more acute.
A new document framework issued by the Depar tment of
Health provides a legal framework for local agencies to use
when developing multi-agency codes of practice for
preventing and tackling the abuse of vulnerable adults
(Department of Health 2000b).This may provide some
guidance in such cases but there may need to be
consideration given to how this framework fits in with
new developments such as direct payments.
However, in practice these concerns led many care
co-ordinators to want to oversee the relationship between
the client and the PA. Some indicated that they were
unlikely to pursue a direct payment if they did not feel that
the client would employ a PA that the care co-ordinator
felt was appropriate. A few even thought that PAs should
be supervised by the care co-ordinators.This close
supervision may compromise the ethos of user control and
independent living through direct payments.
Doing the care management, we’re used to having a lot
of control and overseeing it.We know the people, we
oversee it, but they could lose a lot of that.They could
just get any ‘Tom Dick or Harry’. S/he recruited from
[an agency] but if she had not I might have been more
worried and questioned it. As it was I approved of it cos
I knew the agency cos it’ one we use anyway.They vet
people so that’s like a safeguard.They need more help in
choosing PAs, we need to make sure people get vetted
and people get the right help to do that for perhaps the
ILC could vet people, not the client. I’m not keen on
individuals being able to choose.
One of the things that concerned me initially in the
change-over was whether the liaison between the two
services would… work as efficiently as it does with
services that are already existing was that we had had
very clear liaison structure with, obviously with our own
support workers.
However, at the same time, some care co-ordinators did
recognise that the lack of official mental health training,
professional status and approach might be precisely what
clients want:
However, interestingly it is precisely our caution around
PAs that can actually be a benefit – the positive aspect
of this is the PA actually not having a professional
background, it being a more normal environment etc.
73
8.4 Employing PAs

Some workers also questioned whether there would be
adequate availability of PAs to serve the needs of their
clients. This was particularly the case in view of the wages
that PAs would be offered, the lack of job security or
potential career opportunities.
It is unrealistic to expect that there is a ready pool of
people willing to do the kind of complex and intensive
work for the amount of money paid. (Mental health
service manager)
The Government needs to think about pay structure for
PAs if direct payments is to be extended to people with
such complex needs.
This was also made more problematic given the often
complex needs of many clients where care co-ordinators
often felt that it might be impossible to recruit and retain
PAs with enough experience or knowledge.
ROLES AND RELATIONSHIPS
In terms of the actual work a PA could perform, there was
a concern over their role in supporting clients, given the
specific role that mental health professionals are expected
to perform for their clients.This often resulted in
professionals questioning the training, supervision and
direction a mental health worker would receive, that a PA
might not. In particular, the complex nature of mental
health difficulties made many question how a PA could
take on an ‘asser tive’ role in relation to their clients and, in
particular, deal with conflicting demands that might arise
during difficult periods of crisis. Some staff felt that making
the clients the direct employer of the PAs could make
their employment relationship difficult, if not untenable.
74
Usually it was argued that workers would weigh up the
needs of the user with guidance from their organisation
and their own mental health expertise so as to ensure an
adequate ‘balance’:
You may not get a good balance if they were only
employed by the user.There is a big issue about the level
of ‘friendly persuasion’, ‘firmness’ and ‘toughness’ that
might be possible through a PA employed by a user
directly. On a day-to-day basis it may be difficult to do
this if employed by the user, particularly if the PA is not
very experienced.This might make it difficult to be
‘tougher’ even if it is in the best interests of the user and
they would probably agree that it was in their ‘better
moments’. (Mental health service manager)
Similarly, Ridley and Jones (2002) report that professionals,
particularly managers, worried that the employer/employee
relationship could be compromised particularly in situations
where, to be effective, an individual needs a worker to be
directive and authoritative.
Over and above this, workers were concerned about
appropriate boundaries being maintained between the
client and the PA with regards to preser ving a suppor tive
relationship and not overstepping the boundaries between
friendship, a helping relationship and maintaining
confidentiality. Some care co-ordinators worried about
clients getting off on a ‘power trip’ in relation to having the
power to hire and fire someone ‘if people have such a
deficit in their lives and low self-esteem, you have to worry
about how they might use that power’.

Concerns about risk and safety can hinder the wider uptake
of direct payments. Such concerns can too readily drive
assessments resulting in a neglect of the potential benefits
of risk-taking strategies such as direct payments (Clark and
Spafford 2002). In this evaluation, many participants
identified a dominant risk aversive culture present in mental
health services. This was attributed to a heightened political
emphasis on risk particularly within the contexts of the
proposed revisions to the mental health legislation and the
dominant media agenda, resulting in a heightened focus on
risk assessments. In practice, it is often care co-ordinators
who bear the brunt of this risk aversive climate.This focus
has set the practice agenda and often results in a tendency
to ‘play safe’ which can contribute to a reluctance to pursue
direct payments as an option.
In addition, care co-ordinators may find it hard to move
beyond their clinical role with clients and allow them to
make their own decisions whether they agree with them or
not. Furthermore, there may be a lack of belief or trust in
clients’ abilities, resources and experience. Care co-ordina-
tors could too readily assume that direct payments would
not be suitable for any of their clients because of their
mental health difficulties and ideas about their ‘competence’
and experience. Care co-ordinators could look upon their
role more as about developing clients’ capacity to become
more able to exercise greater levels of choice and control.
Therefore, some care co-ordinators were finding it difficult
to relinquish their professional knowledge and control and
hand over decisions to the service user.The idea that
professionals still hold onto paternalistic ideas and practices
and are not fully embracing the need to relinquish their
control has been highlighted across care groups (Stainton
2002, Holman and Bewley 1999; Holman and Collins
(1997).This tendency may be particularly acute in mental
health services because of specific concerns about clients’
abilities to make decisions in their best interests and their
perceived need for professional intervention and support.
Thus, whilst Stainton (2002) found no evidence that social
workers were discouraging people from direct payments in
general, he reported that social workers working in the
mental health and learning difficulties fields were often
more sceptical about the practicality of direct payments
for their clients.
However, while it has been argued that the willingness and
ability of care co-ordinators to suppor t the possibility of
direct payments is crucial, it is not only their reluctance to
pursue direct payments that has held up implementation.
A number of care co-ordinators have offered direct
payments and clients have subsequently felt unable to take
up the opportunity.
It’s about changing into a different way of thinking and
that’s not just for the care co-ordinators, that’s the clients
too. Quite often it can be as high as you like on the care
co-ordinators agenda, but it’s adjusting to that shift in the
way that clients are thinking… Some people have been
approached and said ‘no, no, it’s too risky, it would involve
too much’…So you have lost clients - even though the
care co-ordinators are fully engaged with the process.
(Direct payments support worker)
Therefore, whilst these concerns may be related to
overprotectiveness in relation to the abilities of mental
health service users, they may also reflect real concerns
that are shared by users themselves. Worries that these
concerns may only be about prejudicial attitudes and
assumptions may mean that such concerns were not
discussed openly and honestly so they can be addressed,
without reinforcing misconceptions about mental health.
Care co-ordinators were often unclear about how much
support could be offered to clients and the possibility of
utilising a number of innovative and flexible ways of
widening access to direct payments, whilst still enabling the
user to delegate control and responsibility, for example
through third party payments, user-controlled trusts and
advanced directives. Therefore, it is important to generate
greater knowledge about the support that can be made
available to service users to help individuals plan and man-
age their own support arrangements. Overall, this suggests
the need for ongoing training opportunities to address the
concerns of users and staff (Murray-Neill 2000). It also
requires more practical ideas about addressing potential
difficulties in selecting and recruiting workers and
development and roles. More generally, it raises questions
about who is able to provide access to direct payments and
whether it should necessarily be care co-ordinators.
This chapter has presented the findings in relation to the
key issues of concerns raised by care co-ordinators. Some
of these, recipients themselves shared.The next two
chapters explore the experiences and views of people with
mental health needs themselves. Chapter nine looks at their
views of accessing direct payments and Chapter ten
considers their experience of managing direct payments.
75
8.5 Discussion

76
This chapter is based on interviews with 27 ser vice users
and focuses on their experiences of getting onto direct
payments. All quotes are from direct payments recipients
unless indicated otherwise. Most people who were offered
direct payments found out about the option of using direct
payments from their care co-ordinator. As we have seen
from interviews with care co-ordinators, it seems to be the
case that care co-ordinators specifically talked to clients
about direct payments if they had identified a specific need
was not currently being met within mainstream service66.
As one client recalled:
I was talking to my social worker and saying that I want-
ed someone to befriend me and go out with me, and I
think that’s when she brought this [direct payments] up.
However, there were a variety of other ways in which
clients heard about the option of direct payments:
●Three people heard about it via a day centre they
attended and subsequently approached their care
co-ordinator about it.
●A number of people had heard about direct
payments from other local user organisations.
For instance, two people heard about direct
payments from a user involvement worker and
one person from a local black and minority
ethnic advocacy project.
●One person heard about it from their clinical
psychologist and another from an employment
officer – both of whom were helping to support the
client get back into voluntary or paid work.
●Two people heard about direct payments through a
close relative or ‘carer’ who had heard about direct
payments through other settings. For instance, one
worked as a PA for a disabled person and the other
worked within social services.
●Another person heard about direct payments
through the local pilot site co-ordinator.
CHAPTER 9
Experiences
of Getting
on Direct
Payments

Although the sample size is extremely small, there was a
difference between the outcomes of people who had
heard about direct payments from their care co-ordinators
and those who had heard about it from other sources.
Thus, the two people in the sample who had their direct
payments turned down had heard about direct payments
from a local user/advocacy projects. Other evaluation data
indicated that some clients are less likely to access statutory
services, particularly for example people from black and
minority ethnic (BME) communities. This may mean that,
although they may be eligible for community services, they
tend to avoid statutory services and may use for example
local black and minority ethnic projects in the voluntary
sector. The local BME workers that were interviewed as
part of the evaluation specifically raised this issue of how
their clients could access direct payments if they did not
regularly see a statutory mental health professional. Many
mental health service users avoided using statutory ser vices
because of difficult past experiences of services and
because of the compulsory nature of some mental health
interventions. This seemed to be the case par ticularly with
service users who had young children and who were
worried about statutory involvement in relation to their
children. One suggestion made was for other local
organisations to be involved in doing assessments for direct
payments rather than them having to be done by a care
co-ordinator, particularity if there are language/cultural
needs and other workers knew the client well.
Accounts from recipients support previous assertions that
the persistence and pro-activity of individual workers,
especially care co-ordinators, direct payments support
workers and advocacy organisations, were key to facilitating
access to direct payments. As one recipient commented:
Although we had a CPN they did not really know
anything about direct payments. It was hard to get a
social worker, but we eventually got one and he took it
up for us. He was great, he did not let it go, he kept
doing all the forms and sending off the stuff and
everything. It definitely was not straightforward but he
did a fantastic job and sorted it all out for us. He was
really persistent. I know that many people would have
just given up.
Referrals leading to an agreed direct payment package were
often where the support of the direct payments support
worker was enlisted early on in the process.The direct
payments worker then worked alongside the service user
(and the care co-ordinator) to develop an assessment
which more closely resembled a self-assessment based on a
needs-led approach. This could then be taken up by the
care co-ordinator and considered in relation to their
eligibility and assessment criteria. However, in a small
number of cases where the direct payments package was
developed just to meet a specifically agreed need67,the
direct payment support ser vices did not necessarily get
involved and the service user was pleased to be able to
access a service.
In addition, in some cases, the care co-ordinator took on
this role and helped the client to develop their own
self-assessments:
Yeah it was [the CPN] he said to us,‘make a list of all
the things you’d like to do if you had the money and put
down the amount of hours needed’, so once we had
done that we could give it back to [the CPN] s/he did
the assessment, s/he typed it all out and went back to
social services to see if we could get those hours for
those things and it worked out fine.
Approximately half of the people interviewed did not
remember having had a community care assessment for
direct payments as such. This was par ticularly pronounced
when their care co-ordinator was involved in developing
the assessment. When the direct payments support
workers worked with the service user to help prepare a
needs assessment for direct payments, clients were more
likely to identify this as an assessment because it was more
focused68.It seems that because care co-ordinators knew
their clients quite well, they were more likely to just write
up their own request for direct payments without
necessarily seeming to involve the client formally in the
process. As one client put it:
Yeah [my social worker] just went off and got on with it
and did it all for me.
77
9.1 Assessments

Service users did not necessarily view this as a negative
process, especially if they trusted their worker. Moreover,
service users seemed content if the package that the work-
er was putting in for had genuinely arisen out of a shared
discussion and if the direct payments support worker had
been involved in the process.
It was reasonably straightforward, because it was [the
CPN] who did it and then he submitted it to social
services, so I mean he had already gone through it with
me and the direct payments support worker who dealt
with my case, she had been through it with me
beforehand, [about] what to expect. Then I thought it
was going to be somebody from social services, but it
was [my CPN] so, and you know I trust him implicitly.
However, sometimes this could cause difficulties later if the
client did not feel that they were sufficiently prepared for
developing their support arrangements through direct
payments, if they wanted to change how they were used
or if they wanted to use them more flexibly.
In some ways they needed to have involved me more in
the beginning to help me think about it more…I feel like
I was pushed into it a bit, not that I did not want it, but
it all happened so quickly.
It was striking how little recipients seemed to know about
direct payments and about how flexible they could
potentially be. This was in part because care co-ordinators
and to some extent even direct payments support workers
tended to agree what direct payments would be used for
at the outset. Care co-ordinators often influenced a client’s
choice of direct payments package. Sometimes it was hard
for both clients and care co-ordinators to consider
alternatives to what has traditionally been provided by
social services.
I did not really understand what direct payments was.
No-one has yet told me what I can use it for! So I did
not know that I could ask for anything. I thought it was
just like a grant you know another route, another secret
door to get something that they had somewhere, like in
the past they’ve had pots of money to pay for fees for
college and things.
78
Often direct payments were used merely as a means to use
what was currently available69 as opposed to agreeing a
certain number of hours based on assessed need and
outcome, which could then be used however the individual
service user saw fit. The latter moves further away from a
service- led assessment towards a needs-led assessment
and is more in line with direct payments guidance and
policy:
As a general principle, local councils should aim to leave
choice in the hands of the individual by allowing people
to address their own needs as they consider best, whilst
satisfying themselves that the agreed outcomes are
being achieved (Department of Health 2003: 6).
Recipients often experienced quite tight constraints placed
on what direct payments could and could not be used for70.
In addition, whilst the support of direct payments support
workers was invariably experienced as positive, they could
often too readily assume what clients would want to use
direct payments for. Often, this was based on their
experience of working with disabled people where, for
example, employing PAs predominates.
However, the majority of clients who took up direct
payments reported being reasonably happy with the
assessment process.Therefore, it may be that at least
initially, many service users (as well as, and especially, care
co-ordinators) are more comfortable with this process and
that it can be a gentler way of introducing the idea of
greater independence, choice and control through direct
payments. However, any such ‘graduated’ process needs to
be checked in order that it is not overly paternalistic and
cautious and ensures that it allows for greater flexibility
over time.
Many recipients became increasingly aware of how much
independence and control they could potentially exercise
through using direct payments, even if they were initially
used as a way to get a particular ser vice:
It’s been a long learning curve. I now know that it’s
about what I want. I did not grasp the fact that this was
about me – me to choose – I did not have any concept
of it at all. It’s taken me all these months to grasp that I
needed to know what I wanted.

In order for clients to be able to fully engage with the
option of direct payments and to be able to take it up, the
timing and pace of the process was crucial. Recipients’
comments suggested that it was important that it was done
at the users own pace such that it was client-led. If the
process seemed to happen too quickly, clients could feel
daunted and put off by the amount of work and
responsibility involved. However, if the process went too
slow it could be frustrating and the initial impetus could be
lost. In this way, suppor t and/or training offered to
potential recipients needed to be tailor-made to suit the
individual’s own needs and done at a pace with which they
felt comfortable. It may be important that there is someone
who can hold onto the idea of direct payments for the
client, or the actual package if it has been agreed, so the
client can take it up at the point at which they feel ready.
Clients highlighted a number of problems with accessing
direct payments. Firstly, care co-ordinators’ lack of
knowledge about the process of direct payments could
make access difficult and time-consuming:
The CPN took forever to do the forms. She did not know
what to do and kept asking me stuff which I could not
answer about it all. It’s like they were just bluffing their
way though it…Neither the housing association, my CPN
or the psychiatrists knew much about it.
Secondly, there were a number of instances where there
was a conflict between what the client said they wanted
and needed and professionals’ interpretation about the
appropriateness of direct payments to fund these. Thus, in
two cases, clients had difficulties accessing direct payments
due to the support that was offered in their supported
housing. One of these clients had their initial application
turned down because the housing association where she
lived claimed that they provided the support that she was
asking for through direct payments. Although as far as she
was concerned, they did not provide this support.
In another example, a client had a direct payments package
agreed but whilst she was waiting for it to be processed,
had a serious mental health crisis resulting in hospitalisation.
By the time she left hospital, a direct payment was not
longer seen as appropriate. A year later she was left with
very little suppor t and the direct payments application had
been forgotten:
Everything was agreed. However, I was sectioned for four
weeks.The hospital social worker was different from my
previous social worker and they knew nothing about it
and just said it was not suitable in my condition and so
it was dropped. My own social worker did not visit me
in hospital.They said it was not their role so I just saw
the hospital social worker. She just said that my
situation had changed and I was no longer suitable and
should forget about it.That I was too ill and could not
manage it. She said once I was more stable maybe we
could approach it again, but it never was. It all just fell by
the wayside.They did not really explain why and I did
not really understand why cos I was actually much worse
and needed more help. I do not see any reason why I
could not have had it. I think I could have managed it.
This points to the potential benefits of continuity of contact
and communication on the part of care co-ordinators in
relation to direct payments to ensure that applications that
have been placed in abeyance can be reactivated.
Furthermore, care co-ordinators need to be able to explain
very clearly to the service user what will happen if they go
into hospital.
Other clients also experienced problems if their care
co-ordinator changed, was on leave or went on long-term
sick. Recipients indicated that this could frequently hold up
the direct payments application. Situations were related in
which one care co-ordinator may be pursing a direct
payment while the next one differed in their assessment of
need and eligibility. This was especially pronounced when a
client had a difficult relationship with their care
co-ordinator. In such circumstances, it seemed that the care
co-ordinator was less likely to support the client in pursuing
a direct payments application. Difficulties around the key
working system has been emphasised where alternative and
more team and community-based approaches have been
advocated as a way round these (see Navarro 1998).
Recipients reported a variety of administrative difficulties
that often held up the process of getting on direct
payments.They indicated that it could take a long time to
process the application, particularly when clients were the
first in an area to use direct payments.
79
9.2 Difficulties Getting Direct Payments

It took a long time, because it was all new. [The CPN]
was having to find out how the process worked himself,
like who to contact, what forms to fill in… I think a
couple of times, the wrong forms were filled in or they
went to the wrong address, that sort of thing… So it
took a while to set up…I think I had to contact social
services and even when I contacted them, the finance
department, even they were confused, because they were
so used to physical problems, that they did not know
what to do with mental health… So there were quite a
few hitches at the beginning, but we got through it.
Even when a package had been agreed, it could take a
while before clients started receiving the payments. Several
recipients commented that paperwork was ‘put to the
bottom of the pile and forgotten’ because of an
administrative error or people who were dealing with the
money being off sick. A small handful of clients had actually
started to pay for their own support arrangements in the
meantime and some had to use their own money or
borrow money. A number of recipients also reported that
the money continued to be late arriving. A common
complaint was that when the money did arrive, it was
unclear what the money was for and what time period it
was meant to cover which often caused undue anxiety.
The first payment did not have a date on it so I did not
know what timespan it was to be used in… it was just a
blank statement, it could have been anything! It’s very
difficult to do financial returns without this.
80
66 For example, a befriending ser vice.
67 Such as gym membership or transport.
68 For example, on what activities they wanted to do and how many
hours were required etc.
69 For example, transport.
70 e.g. to employ PA rather than agreed hours which the client decides
how to meet needs.
In addition, a number of clients also had difficulties getting a
bank account because of previous debts they had incurred.
The direct payments support ser vices repor ted that this
was a problem that was getting more pronounced as
banks were becoming stricter about credit checks.
Having highlighted some of the difficulties recipients
encountered in accessing direct payments, the next chapter
looks in greater detail at how recipients managed their
payments.

In part, clients’ experiences of managing the money and
doing the paperwork associated with direct payments were
related to what they were using the direct payments for.
Thus, when clients used their direct payments to employ
PAs, the paperwork was more complex compared with
things like gym membership or transpor t.
Of the 20 clients interviewed who were in receipt of and
actually using direct payments, nearly all had had initial help
from the direct payments support ser vice in explaining
what was needed in order to manage the payments. In
terms of actually running the payments, a substantial
proportion (8 people) had a close relative managing the
paperwork for them71.Six people managed the payments
themselves. Another client, who used to work in
accountancy, found doing the paperwork to employ a
PA relatively easy:
Well I suppose I have to say it’s probably quite easy for
me, because I am used to keeping financial records, so I
have actually written a spreadsheet program that I put
the hours in and everything else gets done, but of course
not everybody has that experience.
Two people enlisted their PA to do the paperwork for or
with them. In both of these cases, the recipients’ PAs got
support from the direct payment support agency in
running the paperwork aspect of the direct payment on
behalf of the client.
Managing the money is OK…I did bookkeeping before
in work/school.The PA helps me. She goes to the [direct
payments support agency] training course with me and
helped me with the money and paperwork initially.
The only difficult thing I think is the paperwork, but I
don’t do that because I can’t read properly and I can’t
spell, I find it really stressful. The direct payments
support worker come out and showed me what to do,
went through it one afternoon, but it didn’t go anywhere.
I didn’t take it all in…Then she come out and showed
my friend, my personal assistant and now she is all
right with it.
81
10.1
Managing the Money & Paperwork
CHAPTER 10
Experiences
of Managing
Direct
Payment
There are three stages during which direct payment
recipients may require assistance with setting up and
managing direct payments:
1. Pre-assessment: preparing ideas in relation to
what support is required.
2. Start-up: setting up once direct payments has
been agreed (e.g. recruiting PAs).
3. Ongoing support: Continuing support when a
direct payment is up and running.
The last chapter considered direct payment recipients’
experiences of the first stage (the assessment process).
This chapter outlines issues that direct payment recipients
have identified as being important in the following two
stages in managing a direct payment once it has been
agreed. Key issues that recipients identified are considered
under the headings of ‘managing the money and the
paperwork’, ‘additional suppor t with paperwork and
‘employing PAs’. Again, all quotes are from direct
payments recipients unless indicated.

Two people actually had their care co-ordinators doing the
paperwork for them. As one of them explained:
My CPN gives me all the support and helps sort out any
problems with it. It was frightening to start with – keep-
ing separate money that’s not mine, keeping receipts etc.
But now I feel better about it, more independent. I’ve got
into a routine now with it. I work out how much I need
and give the receipts to my CPN and she tallies it all up.
She does it all for me. She just said that now it’s hap-
pening there was no question about it. I wouldn’t have
taken it up if I had to do it myself. I wanted her to do it.
She dreads it!
Another recipient, who used direct payments for going to
the gym, had help from their care co-ordinator in doing the
paperwork:
My social worker does it and I give them receipts when
they ask for it. I just pay the money and keep the
receipts…They do all the paperwork. I definitely wouldn’t
want to do any of the paperwork….It’s fine. I don’t
worry about it.
One person had ongoing help from the direct payments
support worker in doing the paperwork.
If I phone up and need her, she will come out; she’ll
phone up ever so often to see if everything is going OK.
Another had help from their housing support worker:
It’s OK I just use the [bank] card. I was worried about
this first but it’s OK now. I just get the amount I need
and any left over I put in an envelope and keep all the
receipts. I just give all the receipts to the office upstairs
here and they deal with it. [The housing support
workers] keep the receipts and everything.That’s fine.
82
Therefore, whilst a number of recipients were managing the
paperwork by themselves, others felt that they were only
able to use direct payments if someone else handled the
paperwork for them. One client memorably reported that
whilst she really appreciated the help she was able to get
via direct payments in employing a PA she did not see why
she should have to do the paperwork. She could not
understand why social services or the direct payment
support agency could not pay her PA directly:
I would like somebody else to do the payments. I don’t
want any control over it.All I want is to know that I have
got somebody to care for me and I don’t really want any
control of the money. It frightens me, particularly with
the mental health issue. Certainly with bipolar because
there is fine edge and usually a financial side with it, I
don’t really want to be involved with the money side of
things. It’s the legality of it, the responsibility, what if I do
it wrong and what will happen. I really think, although I
am the employer, the City Council are truly the employer
and I think they should do that or [the direct payments
support service] should be the ones responsible for it. I
don’t want any involvement with the finance you see,
because it causes a pressure to me.
Other clients felt that it should be their choice about who
gives them the support to run the direct payment:
It should be the client’s choice to ask their social worker
or CPN if they could do the paperwork until we’re ready
to do it ourselves…They could set up a contract to do
that…We should have more power to do that.

The number of recipients who had enlisted the help of a
close relative to assist them with the paperwork raises an
important issue in relation to access. We have already
discussed in Chapter seven how care co-ordinators may be
more willing to offer direct payments to clients who have a
‘significant other’ in their life who is willing to help them
manage it. Furthermore, the recipients who did have help
from a close relative felt that they would be unable to use
direct payments without this support.
[My husband] does that.. I haven’t had nothing to do
with it in that sense, but I still worry about it. If he
hadn’t have been doing that, I said I wouldn’t want to go
on this payment, because it’s too hard for me to do it.
One client who was offered direct payments did not take it
up in part because she did not feel she had sufficient
support to manage it:
I couldn’t cope with it all on my own. I needed someone
to help me with it. My husband works full-time and
didn’t have the time to help me with it. It all seemed
too much. At the time I wasn’t even able to make the
beds. I just found it too much – It sounded easy and
straightforward but it felt like a mountain to climb.The
hardest bits, yeah well, I had to find a person, then sort
out all the tax and write out the cheques and sort all
that out…I don’t deal with the money in the house you
see. It was too much for my little brain to handle!
Given that many mental health clients can be socially
isolated and do not have a close relative or friend able to
offer this level of support suggests that additional assistance
may be required to ensure that more clients have the
option of using direct payments.Thus one client who did
the paperwork herself recalled that:
[The direct payment support worker] went through the
paperwork with me very slowly but I have still found this
very difficult since. I dread the time of the month when the
paperwork needs to be done. I just feel out of control and
vulnerable with all the forms… This is quite an issue for
me. I still need more help with this. I’m OK when they go
through it with you, but when I’m on my own I lose
confidence. You don’t know what the penalty might be if
you get it wrong.This hasn’t helped my anxiety really.
In those pilot sites where recipients were able to access a
payroll service72,this often suppor ted people in being able
to use direct payments. However, this usually had to be
paid for out of the direct payment package itself.
They pay the tax and National Insurance and tell you at
end of the month how much you need to pay. If I get
stuck I can just phone them up.
Many direct payment packages in mental health were for
relatively small amounts73 and do not include such
additional costs. Therefore there is often little additional
funding available to help with the actual setting up of direct
payments and the paperwork. In the case of larger
packages, additional help may be provided by the PA or a
payroll service. However, this support may be necessary
regardless of the size of the package. Relevant here, a close
relative of a recipient who managed the paperwork stated:
It’d be better if his PA could just complete the time
sheets and we could check them and then send them
off to be paid.Then he could probably do it himself.
Where the individual is assessed as needing additional
support and if they want this support provided by the PA
or from another agency, this additional support could be
costed in. A standard minimum level of additional setting up
costs could be given, regardless of the package size and this
could increase proportionally depending on the complexity
of the package and the number of hours allocated. It is
worthy of note that another area outside the pilot (Essex)
has a Personal Assistance Support Service (PASS) and
subsequently they have a significantly greater take-up of
direct payments than in areas without this service.
Recipients made a number of suggestions which may make
the paperwork aspect of direct payments more manageable
for them.
83
10.2 Additional Support

REPEATING INFORMATION
Firstly, many recipients repor ted that they needed
information to be repeated a number of times and in
different ways before they were able to take it in. Various
recipients said that they were not very good at retaining
information, in part due to their mental health difficulties
and the medication they took which affected their ability
to concentrate.
[The direct payments support worker] went through it
too quickly. I needed for him to go through it several
times. They give you everything at once – it’d be better
if they did it bit by bit.You get a barrage of info.
For this reason, one recipient argued that an audio or
videotape might enable people to retain information better
because it could be re-visited:
Sometimes it might be appropriate to offer a cassette to
somebody with a mental health problem, because I can
achieve more by listening than reading…Reading
something if your mind is muddled and you can’t think
straight, it’s very, very difficult to concentrate and it’s very
tiring. Whereas with something like audio, you can play
bits of it at a time, and you can keep playing that bit
until you understand, or a video, and then they’d get the
visual as well as the audio.
REASSURANCE
A number of recipients stated that it would be helpful to
have mock-up forms to fill in so they could see how it
should be done. Fur thermore, recipients often seemed to
want reassurance that they were completing the forms
correctly. Some also worried about what might happen if
they filled in financial returns wrongly, and whether there
was any ‘penalty’.
84
PLACE TO CONTACT
Another suggestion related to having a central place to
contact74 where they could raise queries about the
paperwork, the financial returns and could check they were
filling out forms correctly to help alleviate anxiety.
I’d like a name and number to be able to phone up if
for example if something’s changed or whatever, like a
0800 number, something local would be best. Otherwise
my CPN has to do it and it’s really long-winded cos then
she has to ask someone else. Anyway, she’s a CPN and
hasn’t got time to do all this.
As one recipient suggested, this service could provide
additional assistance in relation to questions regarding the
flexibility of the payments and what it can and cannot be
used for:
It’s all very mysterious this direct payments – you don’t
really know who does what, who to ask about what etc.
and what happens to the info you send back, the
financial returns etc. and I don’t know what I’m allowed
to spend it on.
Whilst the majority of recipients did worry about doing the
accounts, a number reflected that the biggest worry for
them was actually in recruiting a PA (if they were using
direct payments to employ PAs).

Whilst employing PAs was not the only way in which
mental health service users were using direct payments,
issues relating to identifying, recruiting and managing PAs
were important for recipients. As we saw earlier, issues
around employing PAs was also something that
concerned care co-ordinators and could affect both their
willingness to pursue direct payments for their clients as
well as clients feeling unable to pursue this themselves.
On this point, one care co-ordinator recalled referring two
clients for direct payments. Neither decided to pursue it
because of worries in relation to employing people:
The first client said she was a bit blown away by all the
paperwork and ‘what do you mean I have to pay for
someone, find someone and pay for them, can’t you just
pay for them, can’t you just pay for it, can’t you take that
away from me, I can’t deal with it’. Then she didn’t want
to take it up. She found it too complicated and too much
of a responsibility…I think this was just too much, even
though she could see the benefit in the long run, the
initial stages and the set-up of it, she just thought,‘no
way I can’t, I don’t want to do that’.The second client we
referred was very similar, she was like ‘oh my god, I can’t
deal with that, I’ve got enough on my plate.Will I have to
advertise and find someone? Oh I can’t do that, I don’t
want to’. I think there was a lot of apprehension about
sort of strangers and someone coming into their home
environment. (Care co-ordinator)
It is widely argued in the Independent Living Movement
that employing a PA is the most empowering way in which
a direct payment recipient can direct their support
arrangements (Zarb and Naidash, 1994; Campbell, 1998;
Glasby and Littlechild, 2002). It is also recognised across
care groups that the success of a direct payment package
relies heavily on the ‘match’ or suitability of the PA and the
service user. Therefore, careful attention needs to be paid
to these issues and this section concentrates on recipients’
experiences of this process.
IDENTIFYING QUALITIES OF PERSONAL ASSISTANTS
When thinking about employing PAs, clients identified a
variety of qualities that they wanted their workers to have.
Most important for recipients were the PA’s personality
and that it was somebody with whom they would feel
comfortable. Qualities that were often mentioned included
someone with a sense of humour, who was easygoing,
outgoing, with a ‘cheerful bright’ personality but also
someone they were able to talk to if feeling low. It was
very impor tant that the client felt that they could trust
their PA. These qualities are often related to the
‘befriending’ nature of the relationships required. It was also
often important that the PA could gently motivate the
recipient into doing things without being too pushy. In
addition, it was often important that the PA shared similar
interests, had a similar outlook on life and, to some extent,
a similar educational background.
It was often important that the PA could drive and had
their own car if the clients wanted to be able to go places.
A number of recipients also had pets, and if they did, it was
important that their PA liked animals. Also because of a
number of recipients interviewed who smoked, it was
important to them that their PA did not mind them
smoking.
In addition, whilst recipients varied as to how much
awareness and understanding they wanted their PAs to
have about mental health issues, all felt it equally important
that they had sensitivity to their personal mental health
difficulties and needs.Thus, a number of clients who self-
harmed felt that it was important that their PA understood
why they might harm themselves and was prepared to talk
to them about it if necessary without being patronising or
negative:
It’s important that she understands stuff about self-
harm, like why I do it, the reasons behind it, and she’s
not patronising and she’ll talk to me about it afterwards.
She doesn’t say silly things like some people do like ‘don’t
do it’ or ‘why do you do it?’ or ‘that was a silly thing to
do’.
85
10.3 Personal Assistants

CULTURAL APPROPRIATENESS
Most recipients felt it was important to have a PA who was
the same sex as them.This was especially the case for
women who often felt more comfortable with another
woman. It was also often important that the PA was of a
similar age, although their general personality was more
important.
As stated previously, clients from black and minority ethnic
communities often wanted PAs who shared a similar
cultural background. An African Caribbean woman wanted
a PA who had an understanding of her cultural needs and
could, for example, help her cook Caribbean meals and
understand how to fix her hair as she was unable to do this
by herself. She did not mind if the PA was black or white,
male or female as long as they had the qualities she
required.These also included sharing particular religious
beliefs and being willing to work on Sundays because she
wanted her PA to go to church with her.
RECRUITMENT
Many recipients who used their direct payments to employ
PAs felt that they preferred to employ someone whom
they already knew.This was largely due to the need to have
someone they trusted and who knew them and their
difficulties. If they were able to employ someone they
already knew, they tended to have fewer difficulties with
recruitment and it usually worked out well. Such people
were often friends who usually also worked in the caring
profession.
I employ a friend – she has been a friend for years and
is in the caring business. I thought it’d be better if I knew
someone cos I find it hard to build up a relationship with
someone new, it’d take me ages.
In addition, one client employed their mother whom she
was close to and felt that she trusted:
It is important that you have somebody you know, in my
case, a member of the family who you trust implicitly
with the finances and everything else. It was very impor-
tant to me cos I knew I could trust her. I’d had bad
experiences with carers in the past. I trust my mother
implicitly.
86
What was often important in these examples was that the
PA knew enough about the person’s mental health difficul-
ties to be able to offer appropriate support at the right
time:
She knows me and know the signs when I’m going down
– if she told me I was, I’d believe her because she knows
me well enough.
Moreover, a small number of clients already employed
someone75 initially and because they got on well decided to
employ them as their PA as well. One local direct
payments support agency had a generic PA pool76.In this
area, a number of recipients were able to recruit a PA from
this pool. The direct payments support agency would
circulate a list of potential PAs and their availability, interests
and skills and the recipient would choose people from the
list to interview. In addition, if the support agency had a
direct payments customer/recipient support group, this
provided a useful opportunity for recipients to share PAs.
Some recipients successfully recruited PAs from other care
agencies. Interestingly, these agencies did not often have
mental health specialists. Thus, one client who had a sizable
package employed six PAs from a local agency that worked
with people with learning difficulties. Another recipient
recruited a PA from a local charity working with elderly
people. In such cases, the agency would tell the recipient
what workers they had available and the recipient would
interview them if they were interested.
One person recruited a PA from putting an advert in the
local paper. Another client recruited the three PAs they
needed from answering adverts that workers had put in
the local newsagents and through word of mouth. A few
people had initial difficulties with getting someone they felt
comfortable with but felt OK about changing them where
necessary.
However, difficulty in recruiting PAs was amongst the most
common reason for not taking up direct payments once
they had been agreed. Thus one client was unable to find
someone suitable and decided not to use their direct pay-
ments:
I couldn’t find anyone. I put adverts in the local papers
and job centres but only got two replies and they weren’t
suitable and the hours weren’t enough for people. If
there were people available to do this kind of work it
might have been OK. In the end I just gave up I sup-
pose. It made me feel a bit despondent after all that.

Another client was offered direct payments but decided
not to take it up because she felt she would be unable to
employ someone with enough understanding about mental
health:
They might not have the proper knowledge, training and
experience.When I’m unwell I tell people I don’t want to
see them, whereas [a directly provided service] would
just come round anyway – they understand this and
know how to handle it. It would be far too easy for me
to say you know ‘don’t bother with it today’.
Other clients experienced major difficulties with recruiting
someone which led to significant delays in them arranging
their support. Whilst the considerable help with advertising
offered by the direct payment support agency was sufficient
for some people, for others it was not.
[The direct payments support worker] put the
advertisements around, but in hindsight I feel that maybe
the first advertisements could have been better placed.
… S/he just used the shops and things. I think it would
have been better to advertise in the newspaper because
it didn’t actually attract a lot of people.
[The direct payments support worker] told me that I
had to find someone myself and I didn’t think it meant
just putting up a message on a pin board in [the local
newsagents]! It totally freaked me out and I felt really
uncomfortable about it all. Even though s/he said he
would sit in with me through the interview it wasn’t
enough. I didn’t feel safe enough, I still don’t.
The difficulties in finding suitable PAs were related to a num-
ber of factors. Firstly, recipients expressed concerns about
not knowing people, about having ‘total strangers’ involved,
about not getting on with them and about PAs not being
able to handle it and leaving, about feeling rejected, exposed,
unsafe or uncomfortable. They also worried about PAs
respecting confidentiality or not understanding enough
about mental health. In particular, they were often unhappy
about putting adverts in the local paper or in a newsagent
(the common practice in other care groups).
Secondly, some recipients experienced difficulties actually
finding suitable PA(s).These respondents found that the few
hours they could offer PAs could make it difficult to recruit
someone who was willing to work such few hours and
who was sufficiently available and flexible77.In a few
instances, a recipient had identified a suitable PA but could
not offer them enough hours for them to be willing or able
to accept. The flexibility and unpredictability of some
mental health difficulties could make employment difficult to
negotiate which, in turn, could raise anxieties.
In addition some recipients found that potential PAs were
reluctant to give out their Tax and National Insurance
details for fear of losing out financially. In addition, the low
rate of pay they were offering could also be prohibitive to
recruitment. The seeming lack of formal guidance about
paying higher rates to workers with par ticular skills acted as
a barrier.This was even more problematic if a client had
multiple difficulties78 or if they had specific needs in relation
to language and culture or other specialised knowledge.
However, during the pilot there were certain examples of
PA rates being agreed on a higher rate where the person’s
needs were more complex. Furthermore, some recipients
found that if they tried to use agencies, the agency would
charge more than the direct payment hourly rate.
Effectively, this meant that they would have to employ
someone for fewer hours. These difficulties relate to the
hourly rate being set in accordance with contracts between
the Local Authority and private care agencies.These are
effectively low (due in part to agencies taking a proportion
of the amount) and this makes it hard to be flexible in
relation to alternative support arrangements thus
reproducing a vicious circle whereby it becomes difficult to
recruit workers with sufficient experience and expertise.
It is recognised that in many cases PAs in mental health may
need to engage in a variety of more complex tasks and
have to negotiate more complex needs and relationships.
Yet most PA rates are based on fixed domiciliary care rates
despite the range of tasks that PAs may be required to do.
The resulting difficulties with recruiting suitable PAs have
been identified in previous research by the both staff and
users as an impor tant barrier (Witcher et al 2000; Zarb
and Naidash 1994).
87

With the exception of their care co-ordinators, a number
of clients had not had input from any other support worker
before they took up direct payments. However, when they
had had previous support, various clients commented on
the differences79.Invariably, recipients drew a positive
comparison between the support they were able to
arrange through direct payments and the previous support
they had.The issues they raised are considered in relation
to assertiveness, mental health, befriending, reliability and
flexibility.
ASSERTIVENESS
The majority of recipients interviewed who used PAs
reported being able to assert what they needed their PA
to do. Although they often did not elaborate about how
this happened nor about the process of negotiation with
their workers, it seemed to happen without much problem:
Yeah, it’s absolutely fine. I am able to say what I need
her to do. No, it’s not a problem.
They [PAs] get me to decide what I want…If I’m unwell
then sometimes they’ll do it for me. It’s not been agreed
like that it’s just how it happens, it’s working out great.
However, in a small number of examples, recipients
reported finding it difficult to be assertive with PAs. In these
instances they found it hard to know what they wanted and
needed and then to ask for it:
Because I am in charge, I have got to make the
arrangements myself, and it’s just a bit hard for me at
the moment because I am not, I think I just find it a bit
difficult to talk to people being the boss. I think I do
have problems asking people to do what I want.
I suppose I am a sort of a follower, I am more used to
following people, not telling them what to do. My
problem is I don’t think I am worthy of anything, so
nothing is going to make me think ‘oh yes, I should be
able to tell people what to do’ and all that.
88
Difficulties in being assertive may be a common issue
among people with mental health difficulties, especially
women.This may be par ticularly acute if people have been
used to being told what they need by others. This may also
be related to long-term use of mental health services which
may erode people’s sense of autonomy and independence.
Significantly, many recipients who employed people they
already knew, reported having fewer difficulties with being
assertive. On the other hand, a number of recipients who
employed people they did not already know, also did not
experience any difficulties with this process. Likely as not,
recipients’ ability to be assertive may develop over time.
However, it is wor th noting that clients who find it difficult
to assert themselves and have particularly low self-esteem
may require additional support and assistance. Indeed, it
may be the task of the direct payments support agency to
help the individual to be able to give instructions and then
to recruit workers who are sensitive to this and able to
take instruction.
MENTAL HEALTH SUPPORT
A significant number of recipients felt that they were able
to get some emotional support from their PAs. As
previously stated, the befriending aspect of this seemed
most important. Where recipients reported their PA
arrangements working well, they often referred to their
PAs as being ‘like friends’, whether or not they were actually
friends to start off with. In par ticular some of the benefits
of these relationships appeared to be related to the
‘ordinariness’ of their PAs in that they were not necessarily
mental health professionals:
It’s kind of good they’re not mental health trained cos
they don’t look into the mental health aspect all the
time.
It works well. I can be more open with [my PA].
Sometimes they just see the illness these carers, and
they are not bothered about your emotions, but with
[my PA], it’s much better.
Thus one husband of a direct payment recipient who
employed three PAs argued that the recipient/worker
relationship seemed to be more equal than in the past:
As an equal, as a friend as just someone else in the
public who has got a problem…Previous support
workers were more like a nurse/patient
relationship…With direct payments, these people, they
don’t have any experience of mental health, so you are
telling them you know.
10.4 Employing PAs in Practice

In particular, a number of recipients felt that because they
were in charge, they were in a sense the expert on mental
health issues, not the PA. Therefore, they were more able to
define how and at what pace they wanted to approach
tasks, as well allocate the amount of time available to
complete them.These recipients felt that previous workers
were ‘too pushy’ partly because their time was limited and
partly because it seemed that they knew best.
However, in a small number of cases recipients found it
hard to get any emotional support from their PAs. Some
found that they had employed PAs who were used to
working for people with physical disabilities and did not
necessarily grasp the complexity and subtlety of their
emotional and mental health difficulties.
I mean, half the time I feel like I am supporting them,
rather than them supporting me. She’ll come in and
she’ll say,‘are you alright, I’ll say yes or no, or whatever’,
and then that’s really the last we talk about it… She
came from the PA pool and has worked as a PA with
direct payments in physical disabilities before. I think
that’s the trouble with a lot of them there, it’s more the
physical side.
Although recipients found they could call on their PA for
support with what many regarded as ‘everyday-related
problems such as hospital appointments, paying bills, getting
out etc., most indicated that they would turn to people
other than their PA for suppor t with serious mental health
difficulties, such as experiencing difficult symptoms, a relapse
or crisis.
RELIABILITY AND FLEXIBILITY
Most clients who had transferred from directly provided
support workers to employing PAs through direct
payments, reported that previous suppor t was often
inconsistent, involved too many different people, was too
restrictive in the times available and the tasks they were
able to do. In addition they often felt that they were kept
waiting because the workers turned up late or sometimes
didn’t turn up at all.These factors could increase their
anxiety. However, when they used PAs they were, on the
whole, more able to organise the times and days when
they wanted support and control what they wanted to do
and how they wanted to do it.
Recipients thought it was beneficial that they were able to
get to know the person who was coming to support them
and when they were coming:
Yeah it’s much better because I have got the same
person now. With [the support agency] they were
sending different people and people that I didn’t know
and I wouldn’t talk [to them] and it just got, they were
letting me down and things like that.
You get to know them, you are certain of who is going to
come and when they’re coming so you’re not hanging
about waiting.
In addition, employing workers enabled them to be more
flexible in the way their support was organised to fit in with
their lives and changing circumstances:
It can be a lot more flexible…If I’m bad we can put in
extra hours or if there’s something I need to do I can
switch the times to accommodate it, like going to the
doctors or whatever.
In a way, when I had a support worker from the mental
health team, if it was in my care plan that I’ve got to do
this, this and this, then that’s kind of what we did,
whether I wanted to or not. [Now] I can switch it to
something else and there’s no come-back from the
mental health team. It’s like if the worker was coming
and the weather was really nice and it was meant to be
a shopping day, we could say go for a walk instead…It’s
much more flexible.
89

By comparison, previous support was often experienced as
too restrictive in terms of what the workers were able to
do with clients and what tasks they were able to perform.
Per sonal assistants enabled clients to have more choice
over exactly what they did with the time they were
allocated via direct payments:
I just think it’s a lot better, because …I have got a voice
and I can say,‘can I do this today?’ and she will say ‘of
course you can’. Before [the support worker] used to tell
me what to do and it was like I had no control over my
life.
In particular, recipients employing PAs meant that they could
decide how much time they wanted to spend on tasks or
events. Thus previous suppor t workers tended to visit or
arrange tasks in one-hour slots and in practice this was
often less. With direct payments, clients often pooled the
hours allocated to allow them to spend more time with
PAs. This enabled them to do more things and go to more
places. Furthermore, it also meant they felt less pressurised:
Now I have all the hours in one day it’s much better cos
I don’t feel so pressured into doing things quickly and
getting myself more anxious about it. Now I actually get
more time cos they used to split it up in the week.
However, some people found the flexibility and
responsibility was often difficult to manage and negotiate.
This was particularly difficult for people who felt
unassertive and unsure of their needs especially when they
were aware that they could change at short notice.
The problem is I never know for one day to the next
what I want and how to organise it.
In addition, one client experienced employing her own PA
as less reliable than directly provided support. This was
because if her PA was unwell, or she wanted to change the
day, she often couldn’t replace them at short notice.
However, the agency she used before would ensure that
someone would visit:
I keep changing my mind about what days I want. I
found out that you can’t keep swapping your days.With
creative support you could, you know what I mean and
they’d just send somebody else. If [my PA] rings up in
the morning and can’t come then I’m stuck for the
day… it’s too late to find somebody else.With [the
support agency] they’d have sent someone else, they are
all getting paid anyhow, so the people are there.With this
you are hiring these people and they have got other
commitments, so, like I say, it isn’t always as good as you
think. It’s not always very reliable.
90
In this way, it may be that PA users are dependent on the
ability of their PAs to be as flexible as they need them to
be. This may be hard to achieve, especially if the PAs are
balancing other work commitments. In such cases, they may
be more like support workers who find themselves juggling
a heavy caseload and not being particularly flexible and
reliable.This might suggest the reason employing someone
already known often works better is because they already
have some sense of commitment over and above that in
relation to paid work.
CRISIS
Recipients were developing a variety of ways of dealing
with direct payments if they were unwell or experiencing a
mental health crisis. If they were employing PAs this
depended on what the PA did for them. For one recipient
if they were in hospital for a short length of time80 direct
payments carried on and PAs were able to visit and still be
paid. Alternatively, it was put on hold but the hours could
be saved up and used for when they got out of hospital.
I have been in hospital voluntarily for a few weeks. [My
PA] comes to see me on the ward, she phoned a lot and
kept in contact on the phone, she kept in contact with
me, so the night I came home, she came that night.
However, some recipients argued that their payments were
often not flexible enough to enable them to provide
additional support during a crisis81.One client had a pack-
age which included money for respite if needed and anoth-
er had ten extra hours banked which could be drawn upon
in an emergency. However, contingency funds like this were
rarely put in place. If a client didn’t have a contingency fund
or if their payment wasn’t flexible enough to allow for
changing circumstances and crises, they often had to rely on
the goodwill of their PA to continue to suppor t them82.
Thus, when one client spent a short time in hospital, their
PA continued to visit in her own time because the
payments only covered night sits.

ADVANCED DIRECTIVES
Advanced directives enable people who receive services83
to direct how they would (or would not) like particular
things done, at a time when they might be experiencing a
mental health crisis, are feeling unable to cope or manage
their support themselves. They are designed in advance of
such times when the individual is able to reflect upon their
support needs.They can be developed alone or alongside
significant other(s)84 whom they trust.
Despite the National Pilot promoting the idea of advanced
directives in local sites, care co-ordinators, direct payment
support workers and service users appeared to know little
about their use. Whilst in practice some professionals may
have used advanced agreements or statements, they were
rarely seen as such or developed as part of the direct
payment package. Furthermore, many service users
seemed to depend on the fact that if they employed a PA
with their direct payments that their PA would ‘know them
well enough’ to know how best to respond in a crisis.This
was particularly the case, and often worked well if a client
employed somebody they already knew and trusted.
However, this would not necessarily ensure that their
wishes would be adhered to and seemed to be leaving it to
chance and goodwill. One recipient reflected that it would
have been useful to have had suppor t to develop this:
No one said to me ‘what would you want to happen if
you’re having a bad day?’ like an advanced directive.
How the person would like to be treated by their PA.
No one said this, it would have been really useful to
have been asked this. It was in the information but to be
honest I didn’t read it all. It’s really important to check
this out I think.That’s where it’s different from physical
disability. What not to do in a crisis is often more
important than what to do e.g. for me it’d be to stay
with me until my daughter comes home. Some people
might want to be left alone or whatever. It’s difficult for
a PA if they’re not given advanced directives cos they
may not know what to. I’ve got a friend who knows me
really well so in a way I don’t need to do this, but I
might have done. Having a PA has been really positive
for me but it might not have been.
The direct payment support agencies offered valuable
support and assistance to recipients using direct payments
to employ PAs85.This suppor t given by the direct payment
support agencies was greatly appreciated. However, it was
sometimes felt that more support and prompting could
have been given in preparing recipients for employing
somebody, including recruitment. Additional support was
often necessary in helping recipients think about what they
wanted PAs to do, how to organise their time and what
questions to ask them in an interview.
Nobody got me to think about what I needed to ask
them [in the interview]. I should have been forewarned
that I’d have to ask them questions.Way back I needed
to be encouraged to think about what I needed and
wanted. Reading everything I have now and
understanding what direct payments is, it’s ironic really
that I wasn’t encouraged to think about what I wanted.
The assessment process and all that was OK and there
weren’t really any problems with getting the money or
anything like that but then it was just like left up to me
– ‘right it’s up to you to sort it out now’ and I couldn’t
cope with it. It’s really hard when it’s a mental thing I
mean if you’ve got a physical disability well, you know,
fair enough but I started thinking you know ‘do I really
need this?’.
Par ticipants indicated that it was important that the
support was given in the right way and was not too
controlling. A number of direct payment suppor t workers
gave recipients a standard job advert and job description as
well as standard questions that might be asked. Thus two
recipients in particular recalled that they had designed their
own job advert and job description but reported that the
standard one was sent out from the support agency. As
one of them explained:
I designed an advert and put stuff in for the job
description but they didn’t actually use it – they just
used the standard one which was similar but a bit
different.
91
10.5
Additional Support with Employing PAs

In addition, recipients sometimes felt that they had been
given insufficient time to think this through themselves:
The [direct payments support worker] brought a list of
questions with her, but I sort of had some of my own…
I think that’s something the support worker should go
through with the client… you know what is important to
you like ‘here’s some ideas, you know, that might be
useful and what do you think?’
No I didn’t write [the job description], the direct
payment support worker did.They wrote it and then
showed it to me, and it seemed OK…but I think in
hindsight I would word it differently or encourage people
to word it differently, get a few ideas from them, so I
mean I have learnt from that.
It may be that direct payment support workers did not
have the time needed to offer this additional level of
support and encouragement or it might be assumed that
people would be able to think this through for themselves.
However, in a small number of cases recipients found that
they needed additional support with this.
One recipient made the suggestion that other direct
payment recipients (not necessarily mental health) could
offer one-to-one support to people just setting up their
direct payments.
I can’t do it and I can’t get the help I need. I am not
asking for anything difficult, I just want somebody that’s
using direct payments to talk to me, that’s what I would
like so that I can say, ‘how would you do it?’. Then I can
help people when it’s up and running for me…I can
help people with the payroll and things, because I under-
stand that, and I wouldn’t mind doing that.
92
Direct payments support workers were keen to reassure
clients that they would be able to manage direct payments.
This meant that they often emphasised the support they
offered with the paperwork, but neglected the subtle but
crucial suppor t needs relating to deciding and preparing
what recipients wanted to do with direct payments and
how they might go about doing it.This could set a
precedent that they would be able to continue to support
the process. If ongoing support was not available, recipients
could often struggle later :
The [direct payment support worker] said that I didn’t
have to worry, that they’d help me with everything so I
didn’t really think about it. People like me need to be
encouraged to think about these things earlier. Most
people like myself need a bit more guidance to think of
things other people might think of naturally, like when
the person comes, you will then have to be telling them
what to do, so think what you would like them to be
doing.
Thus another recipient noted:
I got support in preparing for the assessment, but after
that less.The [direct payment support agency] are sort
of very involved at first. After agreeing package they
tended to take over a bit, which was OK, but then there
wasn’t much follow-up, they didn’t really offer support
over problems, or I didn’t feel there was enough support
over problems.
Most recipients had only been on direct payments a short
while and therefore it was difficult to record what ongoing
support people may need. However, it was clear that
ongoing support and reassurance may be necessary over
time and should, where possible, be offered. Furthermore,
as this recipient pointed out, people should be offered the
option of how much and how they would like ongoing
support to be offered and this should be negotiated:
I think you have to offer support as much or as little as
somebody wants, but I think there should also be like an
ongoing support, if they want it… you could say to
somebody ‘would you like me to give you a ring once a
month to see how it’s all going?’… and you could say
yes or no.Yeah, or have a sort of agreement with the
client, say like ‘how would you want us to proceed from
here, do you want to just contact us when you need it?’
[The direct payment support agency] has never
contacted me to ask how it’s going. I have always been
the one to contact them…so to a degree I have felt
isolated there, particularly when all the problems arose
with the PA.

In addition, in one example a recipient was worried about
employing a PA and phoned up a local agency for some
advice about employing someone and whether they knew
somebody reputable. However, she described how they
misunderstood her request and ended up providing her
with agency workers which did not work out.
During the pilot, direct payments support agencies had
developed a number of ways of addressing difficulties in
relation to employing PAs. These included using a ‘pool’ of
PAs86,developing a care plan involving the care
co-ordinator, service user and the PA(s) which would
address and negotiate roles and responsibilities, providing
training courses and suppor t to both ser vices users
and PAs.
This chapter has explored recipients’ experiences of using
and managing direct payments. It has subsequently
highlighted a number of key issues that need addressing in
order to support mental health service users’ access to and
use of direct payments.
At the local level, it is clear this support needs to be
offered if the person requires it and that this support is
offered at a pace that is acceptable to the recipient.
Moreover, it needs to be offered with enough flexibility and
sensitivity to ensure that recipients are able to use direct
payments effectively. Where possible, clients could be given
a choice as to who is able to offer them this support but
such support needs to be adequately resourced. Relevant
here, the local site with the most mental health recipients
were experiencing difficulties in being able to offer the
amount of support and assistance that many recipients
needed. In addition, if PAs were to provide this additional
support this would need to be costed into the recipient’s
package. In some cases, care co-ordinators were able to
offer additional support but this relied on their willingness
and ability within the context of their wider role and
workload.
Where recipients experienced the process as difficult they
often suggested practical ways in which these could be
addressed, for example by having more contact with other
recipients and for example ‘shadowing’ them in the early
stages to see how they manage. If recipients were for tunate
enough to have a close friend or family member who could
offer support, then this could enable them to take up and
use direct payments. However, in order for access to be
more equitable, support and assistance to enable manage-
ment of direct payments should not be left to luck, chance
or goodwill.
The following and final chapter outlines a number of key
areas that have arisen during the evaluation that require
further consideration, development and research. Finally, it
makes a series of recommendations for the development of
the implementation of direct payments in mental health.
93
10.6 Discussion
71 This included husbands, mothers and daughters.
72 This was often attached to the direct payments support service.
73 In comparison with the cost of packages for people with a physical
disability.
74 Either within social services or an independent payroll/administrative
service.
75 For example, as a cleaner.
76 A list of PAs who had been trained in basic care and were
available to work.
77 For instance, evening and weekend working.
78 e.g. physical and mental health problems.
79 For example, in one site it was a direct change-over from support
agency to direct payments.
80 Usually less than 4 weeks.
81 e.g. if in hospital when they felt they required more support and/or
a continuation of their support.
82 For example with visiting in hospital.
83 Via direct payments or otherwise.
84 This may include carers, family, friends, care co-ordinator, direct
payments support worker and the person’s PA(s).
85 For example through proving advice about tax and NI, helping
with advertising for and sitting in with interviews.
86 Held by the direct payments support agency.

94
This report has covered a wide range of issues relating to
the implementation of direct payments in mental health.
Using the National Pilot as a context, this report has
outlined the most important organisational, practical and
ideological factors which have helped and hindered the
implementation process. In addition, and most importantly,
it has identified issues that mental health service users
thought were crucial to them in accessing and using direct
payments.
Overall, the National Pilot to implement direct payments
for people with mental health needs was experienced as a
positive, interesting and useful learning experience for the
five local sites that participated. It provided a framework
for focusing on direct payments, sharing information and
experiences and achieving significant steps towards
progressing direct payments in mental health. It was widely
viewed as a ‘catalyst’ for the process of implementing direct
payments in mental health and as providing an additional
impetus for organisations to engage with the issue of direct
payments. Being part of a National Pilot provided external
attention for the Local Authorities and this acted as an
incentive and helped focus development and priorities.
In general, the National Pilot highlighted the low take-up of
direct payments in mental health, raised awareness and
promoted the idea of direct payments. It drew Local
Authorities’ attention to the possibility of direct payments in
mental health, which many practitioners and senior
managers had not previously considered. Furthermore, the
pilot process enabled sites to focus on developing specific
local procedures for direct payments in mental health.
Both mental health staff and direct payments support
workers indicated that they found it hard initially to
envisage implementing direct payments in mental health,
but that the pilot started to make direct payments a more
concrete and tangible possibility.
Being part of the national project was generally
experienced as a good opportunity to share experiences,
successes and problems particularly about the difficulties of
implementation and take-up. As a result, service users, in
conjunction with their care co-ordinators, direct payments
support workers, advocates and their families developed a
number of innovative direct payments packages.
11.1 Impact of National Pilot
CHAPTER 11
Conclusions and
Recommendations

The pilot enabled direct payments support ser vices, which
were usually geared to working with clients with physical
disabilities, to think about how they needed to actively
support mental health clients. Rather than just passively
respond to where referrals were coming from, this focus
enabled the direct payments support workers to actively
promote direct payments as an option to local mental
health teams.
The pilot provided a positive context for sites to work with
a new practice and concept (in mental health). This back-
ground context enabled sites to try things out that they
would not ordinarily have done. In other words, they were
able to take risks, experiment and test out limitations and
possibilities. In some sites, this facilitated, temporarily at
least, more flexibility and leeway in the system which
increased take-up.
As with any research, there are limitations in the scope of
this study and in the conclusions that can be drawn from it.
Firstly, this research was based primarily on a pilot project
encompassing five Local Authority sites.Whilst this was a
good sample across England, we need to be cautious as to
its wider interpretation and application. As outlined
elsewhere, even between the five Local Authorities there
were a variety of different ways in which information was
recorded locally, which meant that standardised
comparisons were difficult to make. Furthermore, a
relatively small sample of mental health recipients and a
short time-scale resulted in being unable to provide reliable
quantitative ‘evidence’ and ‘outcomes’, particularly in relation
to longer term impact of using direct payments. In addition,
there are clearly differences between areas in terms of
resource availability. Whilst this evaluation was able to
provide an overview of the key issues involved in
implementation, it is not able to offer a more strategic
analysis of resource allocation, commissioning and social
policy highlighting the need for further investigation in
these areas.
The following sections summarise the main issues identified
during the evaluation. Based on these issues, the final
section presents a series of key recommendations.
IMPLICATIONS FOR POLICY AND SERVICE RE-DESIGN
This evaluation has raised a number of key issues in relation
to broader issues of strategy and service re-design. A
strategic approach to the introduction of direct payments
needs to place direct payments in the wider context of
service developments in mental health. Whilst the pilot
enabled local sites to give higher priority to direct payments
in mental health in terms of service planning and delivery, a
variety of pressing and competing priorities in local agendas
meant that wider implementation was, and may continue to
be, inconsistent and patchy. Conflicting priorities between
direct payments and other policies within the
‘modernisation’ agenda could hinder workers from the
various organisational levels in prioritising the rethinking of
assessments, support and funding arrangements necessary
for people to access direct payments. Responding to a
variety of related policy initiatives87 was often experienced
as overwhelming with insufficient capacity to attend to
these demands. Further, the re-organisation of mental
health services both nationally and locally, has resulted in
continued changes in the configuration of local services.
95
11.2 Conclusions and Implications

There would appear to be an absence of strategic
understanding of how these policies and guidelines fit
together. Indeed certain policies are potentially in conflict.
For example, it is unclear how the new proposed revisions
to the Mental Health Act, with its primary focus on risk
management, will work alongside the promotion of
alternatives such as direct payments, which ideally have a
positive risk taking approach at its heart. It has been noted
by the NHS Confederation (2003) that these changes are
likely to result in a greater amount of time spent by mental
health professionals on legal related work. On the positive
side, proposed moves which would strengthen the powers
of advocacy, patients’ and carers’ rights may facilitate greater
access to, and use of, alternative and user-centred suppor t
arrangements such as direct payments.
The issue regarding direct payments for what is considered
to be ‘health’ care is still unresolved and needs serious
attention (Maglajlic 1999; Glendinning et al 2000c).
Despite mental health services increasingly being provided
by integrated health and social services, there is still
evidence of unhelpful distinctions between health and social
care which undermine access to and the creative use of
services and suppor t. However, if direct payments packages
were available for what has been traditionally construed as
health care, it raises difficult questions of how much
responsibility and monitoring the PCT would carry out in
relation to the support given (Glendinning et al 2000c).
In terms of resources, it remains to be seen what impact
the tighter eligibility criteria in line with Fairer Access to
Care policies will have on the availability of more flexible
and responsive services that may be purchased via direct
payments. Given that a significant proportion of direct
payments offered during the pilot were in relation to
‘unmet need’88,limited resources may have a significant
impact on access and take-up of direct payments and
services generally. Further research and evaluation could
develop economic comparisons between areas and focus
on economic re-modelling strategies which may support
individualised funding89.
96
This evaluation has highlighted the variety of different ways
in which mental health service users would like to be
supported outside the usual boundaries of service
provision. This has included suppor t around doing the kinds
of activities that the service user themselves chooses, for
example, extended leisure and educational activities and
opportunities. It is important that ser vices in general, and
direct payments in particular, are able to respond to and
resource such needs.This also includes extending the
parameters and interpretations of community care to
include such activities if it contributes to a person’s social
and emotional well-being. As well as leisure and education
this may also include such things as equipment, alternative
therapies and respite.
Caution needs to be exercised in interpreting the findings
presented here particularly in terms of wider investment
(and dis-investment) in specific mental health services.The
implementation of direct payments clearly raises this issue.
However, the underlying principle of choice and flexibility
will mean that directly provided services which are still
valued and used by people with mental health needs, will
need to be maintained and developed. It is impossible to
predict the future demand for direct payments and the data
provided here only concerns those people who were
offered and decided to take-up this option.
At the local level, lessons can be learned from recipients’
use of direct payments about users’ and carers’ preferences
which might inform the development of mental health
service provision. Further, it would be wor th investigating
the choices made by individuals who did not wish to
pursue direct payments to provide an assessment of service
provision. It may be that service users may not opt for
direct payments if directly provided services were more
user-centred, flexible and responsive. In addition, there is
some evidence from other countries that where
Governments promoted individualised funding without
resourcing community support networks in the non-profit
sectors, it could result in a highly privatised system which
limited the choice and control available to individuals
(Lord and Hutchinson 2003).
This clearly highlights the tension between maximising the
potential for individual choice and control whilst maintaining
a wider commitment to the collective provision of services.
The development of social policies and a strategic approach
to service development need to balance the calls for the
structures in which individuals can ar ticulate their claims for
the support they need to pursue self-defined goals and
purposes (Stainton 2002) and the best conditions which
will evolve and develop services that offer highly
customised, specialised, publicly accountable and collective
service provision and assistance (O’Brien, 2001).

One way of resolving this tension is through the
development of strategies which support the collective
pooling of resources.This could enable the development,
extension and use of community resources and could result
in the development of new communal services or the
regeneration of services that have been run down (Ridley
and Jones 2002; Stainton 2002 and Maglajlic et al 2000).
Co-operatives could be developed which could help
individuals combine their payments to purchase care
collectively and, if necessary, help recipients with
employment and administration difficulties. In the long run,
this may counter some of the difficulties with employing
PAs and meet gaps in ser vice provision, especially for
support in the evenings and at weekends (Ridley and Jones
2002). Such initiatives could also result in the development
of contingency monies, and training and support for PAs
and recipients (Lewis 2002; Spandler 2004).
CARE CO-ORDINATION
Previous research has indicated that the willingness of
individual care co-ordinators is crucial in taking forward or
stalling take-up (Hasler 2003, Witcher et al 2000). Evidence
presented in this report makes it clear that it is both their
willingness and their perceived and actual ability to offer
direct payments that are crucial. Their ability is dependent
upon a number of factors, not least their changing roles and
responsibilities in relation to the wider organisational
context as well as unmanageably large caseloads,
risk-focused assessments, increased paperwork, staff changes
etc.The actual ‘weighting’ of various factors helping and
hindering implementation is hard to determine and future
research may help clarify this90.Feedback from service
users suggested that there were key qualities of care
co-ordinators which helped them to access direct
payments.These included being persistent and pro-active,
being able to make decisions around funding, being creative
and flexible about assessing need and being able and willing
to offer additional support if required by the ser vice user.
The fact that many mental health service users have
contact with health professionals such as CPNs rather than
social workers did not necessarily inhibit take-up as
previously suggested (e.g. Glasby and Littlechild 2002). In
practice, workers from both disciplines used a variety of
coping mechanisms to deal with their constraints and
pressures, some of which lent them to look towards direct
payments. In the context of depleted resources and
inflexible services, some workers were able to use direct
payments in a variety of innovative ways to access the
support that individual services users identified.
At the same time, these very constraints also led the
majority of care co-ordinators to be ver y cautious in
considering and offering direct payments to clients who
they felt might struggle with the responsibility.This led them
to be selective and discretionary about clients to whom
they felt willing and able to offer direct payments.
Therefore, despite the advances described during the
National Pilot, the changes necessary to ensure that all
clients deemed eligible for community care services are
offered direct payments is some way off.
ACCESS AND ALTERNATIVE MODELS OF SUPPORT
New Department of Health guidance (2003) makes it clear
that competence to manage a direct payment (with
assistance if necessary) should be assumed, not a client’s
incompetence. This means that as much support as is
needed to manage this can, and should, be offered. It has
been argued that the limiting factor on self-determination
and direct payments is not the degree of disability, but
rather the quality of support offered (Holman and Bewley
1999). As many proponents of direct payments have
argued, competency is not a fixed state but is determined
by the amount of suppor t available to the individual (Hasler
et al 1999; Ridley and Jones 2002). However, it is not clear
how Local Authorities will be able to fund or provide the
greater levels of support that many clients may require in
order to sufficiently benefit from the greater involvement
that direct payments offers, rather than it being just a token
exercise (Murray-Neill 2000).
An important gap identified in this evaluation was the lack
of knowledge of the various ways that clients can be
supported to manage direct payments (see also Ridley and
Jones 2002). Initiatives developed in the learning disabilities
field may be transferable to mental health, such as circles of
support and supported decision-making (see Holman and
Bewley 1999; Ridley and Jones 2003). Support should be
available from a variety of sources, and be provided in a
variety of ways (see Holman and Bewley 1999; Henderson
and Bewley 2000). User-controlled trusts and other proxy
arrangements involve appointing someone or people to act
on the client’s behalf. This means that individuals do not
have to handle the money directly while retaining control
on how it is spent (Ridley and Jones 2002). Such alternative
models could be used as mechanisms for back-up support
to take over responsibilities should someone become
‘unwell’ (see Holman and Bewley 1999).
97

However, this evaluation also suggests that direct payments
were often more likely to be accessed where family
members and significant others were involved. Mental
health service users may lack a close circle of contacts and
significant others who could act on their behalf and this
may distinguish mental health from other care groups,
particularly people with learning difficulties, where family
members/carers are more likely to be involved. This makes
it even more important to utilise and develop alternative
models of support in mental health. In particular, it may be
that user groups, advocacy or other agencies could be
supported to develop support co-operatives and trusts for
service users who need it (see Maglajlic et al 2000;
Murray-Neill 2000).
ASSESSMENTS AND INDEPENDENT PLANNING
The finding that few service users were aware of having an
‘assessment’,’ may prevent them having the opportunity to
decide that they would like their needs met in other ways.
In the Local Authority site which had the greatest take-up,
the independent direct payments support agency took the
pilot as an opportunity to operate more like independent
planners in line with the model proposed by Salisbury
(1998) and Dowson (2002)91.This model is aimed at
reducing the inherent conflicts of interest involved in care
professionals assessing need, gatekeeping resources and
being service providers. Dowson and Salisbury argue that
what is needed is a planning process that is led by the
person requiring assistance, with the necessary suppor t
provided by an independent community planning service.
This should be kept separate from both the funders and
service providers thus reducing built-in conflicts of interest.
A lack of knowledge about direct payments amongst
mental health professionals combined with the existence of
local direct payments support agencies prepared and able
to take on this role, helped drive a model which is in many
ways closer in practice to that of the independent planning
model advocated by Dowson (2002). However, because
independent planning of this sort is not built into the
system, it is unlikely to continue beyond the pilot stage,
particularly once awareness and knowledge about direct
payments increases.
98
This raises questions about the care planning models used
within mental health and whether it is conducive to direct
payments. We may need to consider promoting alternative
approaches to assessment and care planning. This may
involve the greater use of advocacy at the early stages of
assessment. It is notable that Essex, a Local Authority with
the highest mental health take-up of direct payments
outside the pilot, has developed an advocacy team to
promote the take-up of direct payments.
DIRECT PAYMENTS SUPPORT SERVICES.
The role of direct payments support ser vices needs to be
strengthened and resourced to support their input.The
quality of support offered, crucial to widening access, will
largely be dependent upon the ability of the support
services. Direct payments support services are often the
first step for both clients and professionals in getting
information and advice and can therefore help alleviate
concerns and barriers to greater access.
At the practice level, in addition to the willingness of
individual care co-ordinators, progress in up-take of direct
payments can also be promoted or stalled by the
independence, pro-activeness and availability of suppor t
offered by a direct payments support agency.This support
is crucial both to care co-ordinators and to clients in
accessing, preparing and setting up direct payments.
Individual direct payments recipients may need support at
three key stages during the direct payments process, namely
pre-assessment, setting up and ongoing support. Careful
consideration needs to be given to who is able to provide
such support as well as to the manner in which this
support is offered and given.
There is no firm evidence about whether it is necessary to
have a mental health-specific direct payments support
service or worker within the agency. However, a greater
understanding about some of the difficulties that mental
health service users experience in accessing and using
direct payments needs to be developed. Many recipients
interviewed for this evaluation felt that the direct payments
support agencies were often geared primarily to people
with a physical disability (see also Dawson 2000). If the
additional support that they need is not feasible within the
remit or resources of the individual support agency, it may
be possible to fund local mental health projects, user
groups, advocacy projects and local black and minority
ethnic community projects to enable them to offer
additional assistance if their service users want to access
direct payments. This would require good working
relationships between those groups and the direct
payments support agency, for example, by sharing training
and information.

SUPPORT EMPLOYING PAS
Mental health service users were able to use direct
payments to meet some of their needs in a variety of
alternative ways. Approximately half of the recipients during
the pilot were using direct payments to employ Personal
Assistants (PAs). This was less than is usual in other care
groups where employing PAs is much more common (Zarb
and Naidash, 1994; Campbell, 1998; Glasby and Littlechild,
2002). Employing PAs was often beneficial for clients who
were able to identify and recruit a suitable worker.
However, perceived and actual difficulties regarding
employing PAs were often a barrier to access, take-up and
successful use of direct payments. Recipients experienced
difficulties getting workers for such short hours and at
particular times and wanted more accessible contingency
funding and better back-up arrangements in case of
difficulties (see also Halliwell and Glendinning 1998;Witcher
et al 2000). Formal guidelines about paying PAs at a higher
rate for specific skills, knowledge and experience and also
for unsociable hours at evenings and weekends would help
Local Authorities deal with such issues. For a more general
discussion of the roles, rights and relationship’s between
PAs and recipients see Glendinning et al (2000b), Ungerson
(1997) and Spandler (2004).
In addition, Ridley and Jones (2002) also argued in their
research that engaging an agency to manage employment
issues may resolve many of the concerns expressed by
some recipients. A new project initiated by the National
Centre for Independent Living called ‘Wider Options’ is
looking at alternative ways of employing PAs to help people
who do not want to employ their own workers directly but
wish to have more choice and control over their support
arrangements. Essex for example, has established an
agency92 specifically for supporting recipients to employ
workers.
CHOICE AND CONTROL
Greater awareness and more information are required
about specific mental health-related concepts and tools
which may support ser vice users’ increased choice and
control. Forward planning tools such as advanced
directives need to be promoted both to care
co-ordinators, direct payments support workers and direct
payments recipients.These could ensure that during a
mental health crisis recipients could retain as much control
and choice as they are capable of exercising and this could
help facilitate increasing control once the crisis has passed
(Ridley and Jones 2002). However, the legal status of
advanced directives may need clarifying, particularly as they
are not favoured in the new government proposals to
reform the Mental Health Act (see Szmukler and
Holloway 2000).
In general we must be aware of the tendency to
de-radicalise or ‘downgrade’ innovative ideas and practices
such that they become less progressive and made ‘more
comfortable’ (see Dowson 2002). There are a variety of
ways in which the elements of user control at the heart of
direct payments can be watered down. In mental health
there may be a tendency for professionals to reduce direct
payments to ‘just’ a ‘therapeutic tool’ through for example
‘taking responsibility’, and used as a means of monitoring
and managing clients, ensuring they take their medication
and overseeing the support arrangements that service
users set up.
However, even if initial referrals to direct payments were
not made in the ‘spirit’ of independent living and direct
payments93,the process itself was usually empowering for
the recipient. In addition, workers could also begin to
discover a variety of benefits themselves such as developing
their own role in supporting clients’ autonomy (Stainton
2002). It may be that the locus of control shifts over time
as service users become more able to exercise control
over their choices through direct payments.
More generally, these are part of the changing nature of
power relations which de-centre the professional in terms
of expertise and decision making, challenge the adequacy of
professional knowledge and bring out more client-centred
knowledge, definitions and alternatives. Further research
could focus on how professionals (and service users) are
able to adapt to these changing relationships through
developing alternative modes of communication and
practice. This entails a shift in the values and philosophy
which underpin practice towards building greater capacity
for choice and control and increasing client autonomy.
This requires changes in the way professionals are trained
and supported as well as organisational recognition and
support.
In the longer term, the implementation agenda should be
focused on enabling mental health service users to decide
how they want to be supported. This may, or may not,
include direct payments but is more generally about
investing in sufficient, appropriate, flexible and user-centred
support arrangements to facilitate and resource these
choices.
99

In order to build on the National Pilot, a number of specific
recommendations are highlighted:
RECOMMENDATION 1:
NATIONAL GUIDANCE AND DIRECTION
1.1 The option of direct payments in mental health
needs to be promoted both through Local Authority
and mental health routes.The National Institute for
Mental Health in England (NIMHE), which has an
infrastructure incorporating eight regional
development centres, is well placed to have an
active programme of dissemination and learning
around direct payments. Similarly, the Association of
Directors of Social Services (ADSS) could do much
to raise the profile both with staff and elected
members.
1.2 Further national guidance on implementing direct
payments in mental health is needed to promote
and support action at the local level.This will
need to clarify:
●the relationship with other policy initiatives
●the implementation of direct payments within
the context of health and social care
integration
●the approaches and mechanisms to support
awareness raising, access to and take-up of
direct payments
●the means for ensuring consideration of and
access to direct payments within the CPA
process and the role of care co-ordinators
within this
●the development of local monitoring and
audit arrangements to inform the
assessment of progress.
1.3 At central government level, further clarification is
required in relation to the use of direct payments
for ‘health’ related care. The overlap between health
and social care strongly suggests that direct
payments as an alternative choice to such services
should be funded by health as well as by social
services to reflect the reality of an holistic and ‘joined
up’ approach.This means further development of the
permissive mechanisms which support this, such as
the transfer of funds under Section 28 of the NHS
Act 1977 or the use of pooled budgets which can
also support the commissioning of packages for
those with complex needs.
100
RECOMMENDATION 2: GETTING STARTED
2.1 Each Local Authority should develop a
multidisciplinary and multisector steering group with
an identified project lead with sufficient authority to
support the implementation of direct payments
within the context of health and social care
integration. The steering group needs to:
●work closely with commissioning structures
to facilitate the strategic introduction of direct
payments in mental health
●consider the implications for on-going service
provision as well as for system re-design
●ensure that the systems and process for
making applications for and administering
direct payments are streamlined and, as
appropriate, are embedded within existing
systems that frame practice.
2.2 Local Authorities must develop/commission an
infrastructure to provide suppor t for people with
mental health needs to access and take up direct
payments. Such support must be adequately
resourced, flexible and independent.
2.3 Local Authorities should ensure the allocation of
sufficient funds to pump prime the implementation
process (for infrastructure, development, training
etc.).
RECOMMENDATION 3: ACCESS TO DIRECT PAYMENTS
3.1 Further work is needed to clarify the nature of the
support required to access direct payments94.
3.2 A number of strategies need to be developed to
promote access to direct payments in mental
health.These include:
●Local action to raise awareness amongst
service users about direct payments.This will
include the provision of accessible information
and training which should involve training by
recipients of direct payments (across care
groups)
●Specific consideration to be given to improve
access to direct payments for people from
black and minority ethnic communities and
other marginalised communities
●The issue of self-referrals should be
considered as a way of promoting access.
11.3 Recommendations

RECOMMENDATION 4: PERSONAL SUPPORT
4.1 Within the development/commissioning of an
infrastructure to suppor t access and take-up of
direct payments, Local Authorities need to ensure
the provision of effective support at all stages i.e.
promotion/advocacy, preparation/pre-assessment,
starting up, and ongoing support.
4.2 Service users should be offered choice about how
and who provides them with support to be able to
take up and use direct payments. Other agencies
may be able to provide additional assistance and
support where needed (e.g. local voluntary mental
health projects, user groups, advocacy projects and
local black and minority ethnic community projects).
Such organisations will need adequate information
and funds to be able to provide this support.
4.3 Local direct payments support ser vices need to
develop expertise in working alongside people with
mental health needs and be enabled to do so.
4.4 At the local level, formal guidelines need to be
developed regarding the employment of PAs in
mental health including paying at a higher rate for
specific skills, knowledge and experience and also for
unsociable hours at evenings and weekends.
4.5 Investment in the development of peer support is
required.This will help service users with setting up
and managing direct payments.
RECOMMENDATION 5: THE USE OF DIRECT PAYMENTS
5.1 In line with national guidance and the Independent
Living philosophy, payments should be agreed for
‘needs’ rather than ‘ser vices’ to ensure that service
users are able to decide how they want to meet
their needs.
5.2 Local Authorities need to develop guidelines that
support a creative use of direct payments which
really does facilitate positive choices.
5.3 Where the individual direct payments recipient is
assessed as needing additional support in setting up
and managing a direct payment, this should be
costed in. A standard minimum level of additional
setting up costs could be given regardless of the
package size and this could increase proportionally
depending on the complexity of the package and the
number of hours allocated.
5.4 Due to the fluctuating needs of many service users,
payments must be flexible enough to allow for
changing circumstances. An individual should be
assessed as needing an average number of support
hours a week, but these could be used variably
during the course of the year to account for
changing circumstances. Where assessed as
necessary, contingency funds need to be provided
which can be drawn upon in exceptional
circumstances.
5.5 Local policies and guidelines need to be developed
to enable a greater potential for the pooling of
resources for service users to use direct payments
collectively to meet their needs.This would require
investment to support the development of
co-operatives and user-controlled trusts in which
resources can be collectivised but remain under the
control of the individual and their support network.
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RECOMMENDATION 6: PRACTICE DEVELOPMENT
6.1 Training, supervision and guidance must be offered
to help raise awareness and address the concerns
among mental health professionals about direct
payments and to support the implementation of
direct payments in practice. Implications for the
training, induction and supervision of staff need to
be addressed by the Workforce Development
Confederation and through practice development
strategies.
6.2 Practice development should include:
●The implications of the Independent Living
philosophy for practice
●Consideration of the different models and
approaches to supporting service users
accessing direct payments.This would include
the promotion of self-assessments, advance
directives and learning from models of
person-centred planning (e.g. circles of
support and supported decision-making)
underpinned by a positive approach to risk
taking
●Embedding direct payments within the
CPA process
●Empowering people and creating the
conditions to build greater capacity to
exercise choice and control.
6.3 Networks need to be developed to enable a greater
sharing of good practice across areas. This could
draw upon the experience and networks developed
by the National pilot as well as organisations such as
Values into Action and the National Centre for
Independent Living.
RECOMMENDATION 7: MONITORING
7.1 Although national mechanisms are in place to
monitor the overall uptake of direct payments in
mental health, local monitoring systems should be
developed to ensure equity of access for eligible
service users and assess progress made.
7.2 In terms of ‘performance indicators’, monitoring
which and how many clients have been offered
direct payments as an option is equally if not more
important than the numbers of people actually using
direct payments.
102
RECOMMENDATION 8:
FUTURE RESEARCH AND DEVELOPMENT
8.1 Issues relating to equality of access95 still require
further research and clarification.
8.2 Action research is needed in relation to economic
re-modelling to support greater flexibility in service
provision96 and in relation to the development of
independent planning within mental health as an
alternative assessment framework to suppor t
realisation of greater choice and control for service
users.
8.3 Longitudinal research is needed to identify
longer-term benefits and outcomes for people with
mental health needs using direct payments.
87 These have included the requirement to implement policies and
guidelines such as the National Service Framework; the integration of
health and social services, as well as other related initiatives such
as Supporting People and Fairer Access to Care.
88 Meaning that it was not a direct transfer of resources from a directly
provided service to direct payments.
89 See work developed by the Valuing People’s Support Team within
Learning Disability services.
90 HASCAS in association with the Foundation for People with Learning
Disabilities and the Health Service Management Centre at the
University of Birmingham have been commissioned by the Department
of Health to conduct an evaluation of the impact of the social care
modernisation programme on the implementation of direct payments
across adult care groups (2003-2006). Key objectives of this study are
to identify principal explanatory factors which have led to variable
implementation of direct payments and development of schemes within
England. Further the aim is to evaluate the process of implementing
direct payments within a framework of variables known to influence the
course of policy implementation. Determining the relative weight of
these variables will allow an assessment to be made of the impact of a
range of variables on direct payment implementation and developing
support provision.
91 See Chapter 7 for further explanation.
92 Essex Personal Assistance Support Service (PASS)
93 i.e. used to just provide an extra service.
94 See Appendix C on the work being developed by the Direct
Payments Fellow at NIMHE Eastern.
95 For example, for younger people and for people from Black and
Minority Ethnic communities.
96 The Valuing People Support Team (see Appendix C) is developing a
national programme to help Local Authorities find ways to re-organise
how money flows into services. Whilst this focuses on Learning
Disability services, it should provide valuable learning and similar
initiatives developed in the mental health field.

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The Community Care, Services for Carers and Children’s
Services (Direct Payments) (England) Regulations 2003
specify that direct payments may not be offered to certain
people whose liberty to arrange their care is restricted by
certain mental health or criminal justice legislation as
follows:
(a) S/he is required to submit to treatment for his
mental condition or for his drug or alcohol
dependency by virtue of a requirement of a
community rehabilitation order within the meaning
of section 41 of the 2000 Act or a community
punishment and rehabilitation order within the
meaning of section 51 of that Act;
(b) S/he is subject to a drug treatment and testing order
within the meaning of section 52 of the 2000 Act;
(c) S/he is released on licence under section 37 of the
Criminal Justice Act 1991 subject to a condition that
s/he submit to treatment for his mental condition or
for his drug or alcohol dependency;
(d) S/he is placed under guardianship in pursuance of-
(i) an application made in accordance with
section 7 of the 1983 Act;or
(ii) an order made under section 37 of that Act;
(e) S/he is absent from hospital with leave given in
accordance with section 17 of the 1983 Act;
(f) S/he is subject to after-care under supervision within
the meaning of section 25A of the 1983 Act;
(g) there is in force in respect of him/her a condition
imposed in accordance with section 42(2) or 73(4)
(including such a condition which has been varied in
accordance with section 73(5) or 75(3)) of the 1983 Act;
(h) there is in force in respect of him/her a supervision
and treatment order within the meaning of Part 1 of
Schedule 2 to the Criminal Procedure (Insanity and
Unfitness to Plead) Act 1991;
People subject to equivalent Scottish mental health or
criminal justice legislation.
People in these groups are required to receive specific
community care services. Offering them direct payments in
lieu of those services would not give a sufficient guarantee
that the person would receive the services required.
105
AMental Health Exclusions
Appendices

The following have been referred to in this report:
National Centre for Independent Living
250 Kennington Lane
London SE11 5RD
Te l: 0207 587 1663
www.ncil.org.uk
Values into Action
Oxford House
Derbyshire Street
London E2 6HG
Te l: 020 7729 5436
www.viauk.org
Valuing Peoples Support Team
In Control: Self Directed Services:
A National Programme to change how
Social Care is Organised in England
Programme Co-ordinator: Simon Duffy
Valuing People Support Team
36 Rose Hill Drive
Mosborough
Sheffield S20 5PN
NIMHE Eastern
Direct Payments Fellow: Robin Murray Neil
NIMHE Eastern
654 The Crescent
Colchester Business Park
Colchester
Essex CO4 4YQ
Joseph Rowntree Foundation
The Homestead
40 Water End
Yo rk YO32 6WP
Te l: 01904 629241
www.jrf.org.uk
106
National Co-ordinator
Deborah Davidson.
Site Co-ordinators
Barnet: Miriam Mica; Hampshire and Surrey:
Tina Coldham; Leicester: Colin Gell;
Tameside: Carey Bamber/Rose Ferguson.
National Pilot Steering Group
Peter Beresford (Brunel University); Peter Campbell
(Survivors Speak Out); John Evans (Independent
Disability Rights Consultant); Alison Faulkner
(Mental Health Foundation); Janet Gibson
(WECIL ltd) UKAN South West); Caroline Jenkins
(Mad Women); Laura Luckhurst (NCIL);
John Martin (Franz Fanon Centre); John McCracken
(Department of Health); Diana Rose (Sainsbury
Centre for Mental Health);Terry Simpson (UKAN);
Simon Stockton (Department of Health).
Participating Local Direct
Payments Support Services
Barnet Direct Payments Support Ser vice
Flightways
The Concourse, Graham Park Estate
Barnet, London NW9 5UX
Te l: 020 8205 9976
Hampshire
Southampton Centre for Independent Living
6 Northlands Road, Southampton SO15 2LF
Te l: 023 8033 0982
Leicester Mosaic
2 Richard 3rd Road, Leicester LE3 5QT
Te l: 0116 251 5565
Surrey Independent Living Centre
Astolat, Coniers Way
Burpham, Guildford GU4 7HL
Te l: 01483 458111
Tameside Direct Payments Support Agency
Loxley House, Birch Lane
Dukinfield, Cheshire SK16 5AU
Te l: 0161 368 5832
B
National Agencies & Resources
CNational Pilot Information