ArticlePDF Available

A Literature Review on Multiple and Complex Needs



Content may be subject to copyright.
Social Justice
A Literature Review on
Multiple and Complex Needs
Dr Ann Rosengard and Isla Laing
(Ann Rosengard Associates)
Dr Julie Ridley
(Ridley Kirk Consultancy)
Susan Hunter
(University of Edinburgh)
Scottish Executive Social Research
This report is a web only publication. It is available on the Scottish
Executive Social Research website
© Crown Copyright 2007
Limited extracts from the text may be produced provided the source
is acknowledged. For more extensive reproduction, please write to
the Chief Researcher at Office of Chief Researcher,
4th Floor West Rear, St Andrew’s House, Edinburgh EH1 3DG
The views expressed in this report are those of the researchers and
do not necessarily represent those of the Department or
Scottish Ministers.
Study aims i
Methodology i
Key findings ii
Good practice and lessons for implementation iv
Background 1
Aims and objectives 2
Research method 2
The scope and limits of the study 4
Structure of the report 5
Introduction 6
Complex terminology and mutliple issues 6
Emergent policy concerns and priorities 9
The prevalence of multiple needs 12
Summary 13
Key Points – Chapter Two 14
Introduction 15
Constraints on awareness 15
Barriers to access 19
Key points – Chapter Three 27
Introduction 29
Experiences of care and support 29
The context of transitions 38
Unsettled pathways, fragile solutions 40
Non-engagement, exclusion and low participation 41
User involvement 46
Outcomes 47
Key points – Chapter Four 50
Introduction 52
The gaps 52
What do people with multiple and complex needs want from services? 62
Key points – Chapter Five 64
Introduction 65
Increasing awareness of services 65
Improving access through creative targeting and flexibility 67
Improving the experience of service provision 69
Negotiating fragmented services 74
Increasing service user involvement and control 78
Ensuring smooth transitions 85
Service outcomes 87
Joint working 89
Targeting services and resource issues 92
Service principles 93
Key points – Chapter Six 94
Introduction 95
Comment on the research 95
Addressing the gaps and deficits 96
Implications – improving the response 102
Concluding points 105
NEED 131
Information provison 134
Improving access to services 134
Improving social and health care through planning, joint work and participation 137
The research team are very grateful to all those who participated in our ‘expert’ consultation
programme, who contributed their experience and expertise at the start of this literature
review. Their input was both informative and stimulating and it assisted the team to focus on
the breadth of needs under focus, core influences on people’s experiences of services, and
common strands in good practice. Secondly, we offer our thanks to those agencies that
submitted reports to highlight the experience of people with multiple and complex needs and
examples of good practice. Finally, but not least, we wish to thank Leyla Charlaff, Catherine
Bissett and Louise McAspurren (Social Justice Equalities Research Team) and Neil Langhorn
(Social Justice), for their support during this project.
1. Given the increasing attention to ‘multiple and complex needs’ in policy and practice,
the aim of this research was to review the evidence from the research literature on service
provision for people with multiple and complex needs. Five key objectives of the literature
review were: to examine definitions of ‘multiple and complex needs’ and to identify client
groups who are identified as having these needs; to explore people’s awareness of services
and options; to explore factors affecting access to services; to examine service users’
experiences; and to identify best practice in service provision and lessons for implementation.
2. The wide range of potential groups to be covered and the diversity of services to
address their needs, required the literature review to focus on: literature covering multiple
and complex needs from Scotland and the UK since 1999; existing reviews and summaries of
findings; good practice guidance issued by the Scottish Executive and UK Government
Departments; published and grey research literature, including needs assessment reports and
research identifying both service user experiences and barriers to accessing services or gaps
in these. Before conducting literature searches 15 key informants were consulted, and, during
the project, a focus group was conducted with research and policy staff within the Scottish
Executive in March 2006.
3. Searches of relevant databases, internet sites and publication search sources were
carried out in 2 stages. The initial trawl of literature sought to identify definitions of multiple
and complex needs from the literature. The subsequent phase of searches broadened the
focus to address the wider research interest in service pathways in terms of the experience of
people with multiple and complex needs in terms of ‘getting into services, getting on within
services and getting through or moving on within and through services. Additionally the
review sought to clarify associated best practice.
4. Given the diversity of the material covered and the breadth of its focus this review
makes no claim to full comprehensiveness in tackling the subject of meeting the needs of
people with multiple and complex needs (however defined), but it did strive to identify
systematically the key themes running through the literature.
5. The review covered 3 broad categories of literature that address multiple and complex
needs, which overall focus on overlapping themes. First there was a body of literature that
explored service and policy implications of issues of multiple and/or complex needs, much of
which focused on particular client groups. Secondly, a larger body of literature used the
terminology of multiple and complex needs but did not focus specifically on related policy
and practice implications. Thirdly, a far wider body of literature was referred to that
addressed relevant themes without explicit use of the terminology of multiple and/or
complex; rather they referred to ‘multiple disadvantage’, ‘multiple problems’ or ‘severe
exclusion’ and linked this with the context of poverty, dependence on welfare benefits, and
the impact of homelessness, serious health problems and impairment, literacy problems,
substance misuse, criminal justice issues and/or in some instances, institutionalisation and
leaving institutions. Overall the study focused mainly on the first 2 groups of literature.
Multiple terminology
6. A plethora of terms are linked with the concepts of ‘complex’ and ‘multiple’ needs,
used by various disciplines, sometimes specifically, and often interchangeably. They include:
‘multiple disadvantage’, ‘multiple disabilities’, ‘multiple impairment’, ‘dual diagnosis’, ‘high
support needs’, ‘complex health needs’, and ‘multiple and complex needs’. This multiple
usage was confirmed by preceding reviews carried out by Rankin and Regan (2004) and
Keene (2001). Rankin and Regan usefully identified the essence of complex needs as
implying both breadth of need (more than one need, with multiple needs interconnected) and
depth of need (profound, severe, serious or intense needs). Additionally, they use the term
‘complex needs’ as “a framework for understanding multiple, interlocking needs that span
health and social issues”.
Who has multiple and complex needs?
7. A very wide range of people were identified as having multiple and complex needs.
These included:
People with mental health problems, including ‘severe and lasting’ problems
Those disadvantaged by age and transitions – young and older people
Those fleeing abuse and violence – mainly women and refugees
Those culturally and circumstantially disadvantaged or excluded - minority
ethnic groups; travelling people
People with a disability, including profound, severe or long term impairment or
disability and those with sensory disabilities with ‘additional needs’
People who present challenging behaviours to services, for example in schools,
within residential services/ hostels or in their own neighbourhoods
People who are multiply disadvantaged by poverty, poor housing, poor
environments or rural locations which mean they are distant from services
People who are ‘marginal, high risk and hard to reach’, who may be involved in
substance misuse, offending and at risk of exclusion (Watson, 2003)
People who have a ‘dual diagnosis’ of mental ill health and substance misuse, or
of other combinations of medically defined conditions.
Key patterns in service responses
8. Chapters Three and Four of the report focused on how people with multiple and
complex needs fare in terms of awareness, access and experience of the services that they
need. Some key problems identified included:
Awareness: There was regular identification of a lack of or inaccessible information, poorly
advertised services and low awareness of what services can offer.
People from black and minority ethnic communities, refugee and asylum
seekers face particular difficulties in accessing information and advice
There are shortfalls in interpretation and translation services and a lack of
awareness among individuals and agencies about how to access these
Other groups with multiple and complex needs, such as people with dementia,
people with sensory impairments (Scottish Executive, 2003b), and people with
multiple and profound intellectual disabilities also often do not know what
services there are and face barriers to accessing services
Current advice services tend to treat problems in isolation; advice can be hard to
access and referral mechanisms inefficient
Many people, including people with additional needs and their carers, are
daunted by complex service systems.
Accessing services:
Many people with multiple and complex needs do not gain access to the services
they need or end up in inappropriate services
Poverty and inequality impact on disadvantage in accessing services, while low
aspirations (by professionals and service users) also limit opportunities
Disabled people generally experience significant barriers to access
People with multiple and complex needs may be excluded from services
because of criteria governing service use (e.g. age restrictions)
Some targets undermine the will to work with clients with multiple needs
Lack of referrals between agencies and inappropriate referrals limit access
Long waiting lists worsen problems for those with multiple/complex needs.
Experience of services:
People with multiple needs may be ‘defined out’ or excluded from services for
organisational reasons, e.g. their needs are assessed as ‘too complex or
challenging’ for the service(s) in question
Some feel staff attitudes are insensitive and unhelpful which prevents trust
Inflexible service criteria (eg. age cut off points) prevent continuity of care
Service users and carers are often unaware of entitlements to assessment
Many receive repeated assessments which is stressful
A ‘silo mentality’ works against co-ordination of support and risks people
receiving inappropriate services with poor outcomes
Medical ‘dual diagnosis’ labels limit the range of options
Assessment, support planning and resources can be inadequate for people
affected by transitions, thus delaying access or limiting people’s rights
When service users and carers disagree with professionals’ assessments,
options appear to be constrained by resources or limited vision
People from minority ethnic communities, refugees and asylum seekers do not
always receive sensitive assessment or access interpreters and translators
Non-engagement with services occurs because of dispositional, organisational,
situational and structural factors, including: lack of trust and confidence, cultural
insensitivities, services’ systems or cultures being incompatible with life-styles,
poverty impacts, and people not being ready to address problems. In turn, non-
engagement may exacerbate low level problems and exclusion. For some,
persistent exclusion may result, interspersed with crises related to health or
homelessness for example.
Summarising the constraints and exploring what service users want
9. Overall the research highlights that:
At government level there is a lack of strategic prioritisation and fragmentation,
while local commissioning systems are often fragmented
Local service networks may involve lack of co-ordination and poor information
flow, a lack of support for participation, agency divides and culture clashes
At service level, responses may be limited by narrow vision; short-time frames,
crisis-driven assessment and communication blocks
Wider constraints on positive responses include stigma and resource constraints.
10. While people with multiple and complex needs appeared to be significantly
disadvantaged, the service responses they valued were broadly similar to those valued by
service users in general. They range from person-centred approaches that treat people with
respect and sensitivity, to the scope for accessing appropriate and responsive services in a co-
ordinated way (Chapter Five). Moreover, a significant range of good practice was identified
in Chapter Six. This included:
Targeted and outreach information provision in accessible formats
Single access points and ‘one stop approaches’
Services that address ‘whole person’ needs and do so in partnership
Personalised and person-centred service responses
Co-ordinated and integrated assessments
Outreach services that seek out and stick with ‘hard to reach’ groups
Community development and empowering approaches, such as peer education,
that promote participation and engagement
Professionals with a remit to link and co-ordinate support services such as key
workers, link workers or service navigators can help minimise the impact of
service fragmentation
Creative examples of joint work, partnerships and joint training.
Beyond the good practice identified, the policy developments and practice guidance
covered in Chapters Six and Seven emphasise the following:
Support, care or pathway plans as useful tools for moving forward
IT and information sharing
Involving service users (and carers) at all levels of service planning,
development and delivery, alongside access to advocacy
Recognition in target setting that ‘soft’ rather than hard or quantifiable outcomes
may be most appropriate for clients with multiple/ complex needs.
11. Key elements of good practice are outlined further in Chapter Seven and Appendix 3,
including in regard to:
Partnerships and agencies developing strategies to target improved responses to
people with multiple and/or complex needs
Developing more innovative and imaginative joint approaches
Targeted information and advice about services
A range of approaches and resources including highly supported longer-term
Access to direct payments
Maximising participation and involvement and access to advocacy
Committed, creative approaches to resource pooling.
12. Finally, this study found that multiple needs affect a wide range of people to varying
degrees and with varying consequences. Overall, while the report illustrates a variety of
excellent practice, more generally it presents a bleak picture of the quality of responses
obtained by people with multiple and complex needs, who continue to be significantly
disadvantaged and excluded. It emphasises significant gaps in services and support and
stresses the need for more innovative and creative joint strategies, as well as partnerships that
involve service users in increasing the effectiveness of the service response. It recognises
that some people will not be ready to engage with what is on offer, but urges persistence. It
also recognises significant shortfalls in funding that must be addressed to meet needs.
1.1. The primary motivation for the literature review came from the Scottish Executive’s
commitment to assessing the impact of multiple and complex needs and how a range of
services can respond effectively, taking account of recent and ongoing national developments
that are relevant to good practice. The study was commissioned to complement 2 current
strands of work within the Scottish Executive:
1. Analysis by the Office of the Chief Statistician to explore the prevalence of
particular needs and combinations of need among people belonging to various
social groups
2. A funded series of pilot/demonstration projects to address multiple needs in
relation to specific sectors, such as health and social work services, and the
monitoring and evaluation of these projects.
1.2. The literature review is set against the backcloth of recent developments in social
policy and related agendas and streams of work:
The ‘personalisation of services’ agenda (Leadbeater, 2004)
Developing better public services in Scotland through the Modernising
Government Fund (Scottish Executive, 2003a; Scottish Executive, 2006a)
The Social Exclusion Unit in the Office of the Deputy Prime Minister’s
(ODPM) work on ‘Improving Services, Improving Lives’ project, and
Proposals on the provision of social care to people as defined in ‘Meeting
Complex Needs: The Future of Social Care’ (Rankin and Regan, 2004).
1.3. It is worth highlighting at the start that The Social Exclusion Unit has turned its
attention to issues of multiple and complex needs and has noted that:
“Effectively meeting the needs of disadvantaged people – particularly those
with the most acute/and or multiple needs can be expensive. In the context of
increased efforts to make efficiencies, we need to develop the best possible
understanding of the economic and ethical cases for investing in more
intensive and longer-term support for those who need it.” Social Exclusion
Unit, 2005a, p16).
1.4. The overall aim of the review as commissioned was to identify, organise, evaluate and
summarise key evidence from the research literature on a range of issues relevant both to
service provision and to people with multiple and complex needs.
1.5. Further, the study had 5 key objectives, which were to:
1. Identify and define ‘multiple and complex needs’ and the groups most likely to
require support
2. Explore awareness of services and options
3. Explore factors affecting access to services
4. Examine users’ experiences of service provision
5. Identify best practice in service provision and lessons from implementation.
1.6. Given the scope and range of services (from health and social work to legal and
financial services) and potential groups (e.g. people with disabilities, people with low
incomes and minority ethnic communities) to be considered within the terminology of
‘multiple and complex needs’, the size of the literature base on this topic is potentially
infinite. In an attempt to limit the scope of the literature review to a manageable task within
the short timeframe it was decided to focus in the main on:
Literature on multiple and complex needs from Scotland and the UK, which was
published within the past 5 years, i.e. since 1999
Existing reviews and summaries of findings wherever possible
Good practice guidance issued by the Scottish Executive Departments,
Communities Scotland, the Office of the Deputy Prime Minister, Department of
Health and other governmental departments
Published and grey research literature including needs assessment reports, which
refer specifically to multiple and/or complex needs in relation to areas of the
research framework
Research findings identifying both service user experiences and barriers to
services or gaps.
Identifying relevant literature
1.7. An initial step in searching the available literature involved consulting key informants
and organisations, in addition to conducting systematic reviews of library and on-line
catalogues and databases. Given the interest in ensuring key relevance to Scotland and to
policy and practice, 15 key agency representatives and/or individual ‘experts’ were contacted
by email and telephone. A small number of face-to-face interviews also took place and a
focus group was held with research and policy staff within the Scottish Executive in March
1.8. These included academics from a range of disciplines (disability, dementia, social
policy, faiths and religion) at Edinburgh, Strathclyde, Stirling, Dundee and Ulster
Universities as well as housing and community care organisations (including Community
Care Providers Scotland, Turning Point Scotland. Homeless Link, Scottish Refugee Council).
The interviews sought to investigate:
Definitions of multiple and complex needs
Whether issues of multiple and complex needs had emerged as a specific
concern in their field or organisation
Main client groups defined as having multiple and complex needs
The key issues in terms of access to services, pathways in and through services
Key implications for practice and policy
Informant’s knowledge of grey literature or key published documents to review
The importance of focusing on multiple and complex needs.
1.9. Searches of relevant databases, internet sites and publication search sources were
carried out in 2 stages: the initial trawl of literature sought to identify definitions of multiple
and complex needs from the literature, whilst subsequent searches broadened this search to
literature relating to the wider research framework that focused on service pathways and best
practice. The focus on service pathways centred on the experience of people with multiple
and complex needs in terms of ‘getting into services, getting on within services and getting
through or moving on within and through services’. Additionally the review sought to clarify
associated best practice. Given these concerns, tables will be presented that summarise
chapter findings at the end of Chapters Three, Four and Five, in relation to the stage of the
service pathways covered, related processes and influencing factors and implications for
service responses.
1.10. The searches identified below were conducted to maximise the scope of the review.
Table 1.1.: List of main databases and indexes sourced for the literature review
Library database/Index Publisher Journals Internet
Government sites
IngentaConnect Pavilion Press Community Care Joseph Rowntree
Scottish Executive
IDOX/PLANEX Policy Press DEMOS Department of Health
Applied Social Science
Index and Abstracts
British Journal of
Social Work
Turning Points ODPM/Social
Exclusion Unit
Google Scholar Health and Social
Care in the
Terrance Higgins
Department for
Constitutional Affairs
Social Care Institute for
Excellence SCIE/ Social
Care on Line
Journal of
Integrated Care
Institute of Public
Policy and
Research (IPPR)
Valuing People
Science Direct Revolving Door
Community Care Works
University of Glasgow
Kings Fund
1.11. Keywords including ‘complex needs’, ‘multiple needs’, ‘multiple and complex
needs’, ‘multiple disabilities’, ‘multiple impairment’, ‘multiple disadvantage’ and ‘dual
diagnosis’ were used to search the databases at Edinburgh and Glasgow University libraries,
the National Library for Scotland and online databases. In later searches these were
combined with keywords representing aspects of service pathways (awareness, access, user
experiences, outcomes) and best practice (e.g. joint working, partnerships, holistic, person
centred, one stop). In addition, reference and bibliography lists in key documents were
scanned for further useful materials.
1.12. Two team members conducted the main searches of the literature, while all team
members conducted reviews and produced summaries on each item reviewed. The literature
covered was recorded, summarised and classified in terms of:
Focus on particular client groups, policy and practice in Scotland, UK or wider
Method – qualitative or quantitative
How multiple and complex needs are addressed
Definition of multiple and complex needs and related issues
The focus on service user/non user pathways and experience
Gaps, deficits and constraints identified
Implications for policy and practice and
Other relevant themes.
1.13. Key themes across the whole of the literature reviewed by each consultant were
identified and discussed as the work progressed. This added to a cumulative analysis across
all the literature and reflects the aims and objectives of the study.
1.14. The lack of consensus and consistency within the literature on defining multiple and
complex needs posed a major challenge to determining the search parameters for the
literature review. Additionally, the broad approach required meant that it was not possible to
cover all areas in depth within the timeframe. While the research team have not intentionally
left out material relating to specific groups or service responses, the review cannot claim to
have achieved full comprehensiveness, or to have treated all the literature equitably. Overall
however, it did strive to identify systematically the key themes running through the literature
and to reflect where the balance lies within the literature.
1.15. On the scope and approach of this review, it is important to clarify that rather than
focus on exploring multiple and complex needs from the starting point of particular needs
groups (such as mental health, learning disability, older people, those in contact with the
criminal justice system, or people with particular conditions), it was resolved to focus on
common strands of experience in the context of wider constraints and opportunities for
people with multiple and complex needs.
1.16. The broad approach required meant however that it was not possible to cover some
areas in depth within the timeframe. While the research team have not intentionally left out
material relating to specific groups or services, the review does not claim to be
comprehensive and does reflect where the balance lies within the literature. There may
therefore be inequitable treatment of some areas of literature.
1.17. Overall we found 3 broad categories of literature that addressed multiple and complex
needs, which more or less, and from different perspectives, covered overlapping themes. The
first group consisted of studies that addressed the service and policy implications of issues of
multiple and/or complex needs. A minority of these studies provided an overview of the
issues for people with multiple and complex needs, while most specifically addressed the
multiple and complex needs of a defined client group. While certain studies offered very
useful insights and leads in relation to the aims and objectives of this study, it was found that
many studies did not systematically focus on people’s pathways through services, which was
a key focus of this research.
1.18. The second was a larger body of literature which used the terminology of multiple and
complex needs, but this focus was not central to the study. Most relevant policy reviews and
reports did not surface through initial literature searches, but required searches on a range of
web-sites. The third was a far wider body of literature that this study could not quantify or
address systematically, that addressed equivalent themes to those covered by the first 2
groupings, but without explicit use of the terminology of multiple and/or complex needs.
Examples included where authors used terms such as ‘multiple disadvantage’ or ‘severe
exclusion’ and then referred to the consequences of significant poverty and dependence on
welfare benefits, coupled with the impact of homelessness, serious health problems and
impairment, literacy problems, substance misuse, criminal justice issues and/or in some
instances, institutionalisation and leaving institutions.
1.19. While this review has mainly focused on the first two categories of literature, where
the research team was aware of other directly relevant material in the latter category, which
shed light on access issues or pathways in and through services, or on good practice
implications, this has been referred to and considered.
1.20. Another point that should be acknowledged is that, in the main, the literature
reviewed represents published material based on academics and professionals’ perspectives.
Some of this represented ‘grey’ literature, including agencies’ reports accessed directly or on
the web. Overall it appeared that this could offer a fruitful source of description and
insights, although it was not feasible to tap this theme comprehensively within the time
available for this project.
1.21. One key point was that while Social Exclusion Unit reports and some Scottish
Executive reports accessed have addressed multiple and complex needs building on the
perspective and voice of service users, this was a clear gap in the overall literature.
1.22. Chapter Two addresses the task of defining multiple and complex needs and it
considers their prevalence. While the relevant literature draws on a number of perspectives,
disability and social justice perspectives dominate. Chapters Three and Four review a range
of literature covering pathways into and through human services, while Chapter Five focuses
on summarising the gaps in services and clarifying what service users want. Chapter Six
presents findings from the literature relating to ways of addressing the gaps and improving
service responses to people with multiple and complex needs. Finally, Chapter Seven draws
together the main themes raised through the literature review and discusses the implications
of these themes for Scottish policy and practice.
2.1. This chapter first considers how the terms ‘multiple’ and/ or ‘complex’ needs have
been defined and applied, primarily to clarify the client groups whose needs are of concern to
this study and to identify key emergent themes. We then consider what some of the literature
tells us about the prevalence of multiple and complex needs. This will set the context for
exploring aspects of service pathways, gaps and best practice in meeting the needs of people
with multiple and complex needs in subsequent chapters.
2.2. A plethora of terms are linked with the concepts of ‘complex’ and ‘multiple’ needs,
used by various disciplines, sometimes specifically, and most often interchangeably. They
include: ‘multiple disadvantage’, ‘multiple disabilities’, ‘multiple impairment’, ‘dual
diagnosis’, ‘high support needs’, ‘complex health needs’, and ‘multiple and complex needs’.
2.3. Overall the review of the literature and our consultation programme points to a lack of
consensus on the meaning of the various terms associated with ‘multiple’ and ‘complex’
needs. Often there was an assumption that complex and/or multiple needs are a matter of fact
and can be understood without definition, and a strong thread through the literature was that
the terms are used interchangeably.
2.4. Having arrived at a similar conclusion, Rankin and Regan (2004) usefully identify the
essence of complex needs as implying both:
breadth - multiple needs (more than one) that are interrelated or interconnected
depth of need - profound, severe, serious or intense needs.
2.5. Rather than use the term ‘complex needs’ to describe an individual’s characteristics,
Rankin and Regan (2004) define it in terms of an active framework for response. These
authors suggest the term offers:
"A framework for understanding multiple, interlocking needs that span health
and social issues. People with complex needs may have to negotiate a
number of different issues in their life, for example learning disability, mental
health problems, substance abuse. They may also be living in deprived
circumstances and lack access to suitable housing or meaningful daily
activity. As this framework suggests, there is no generic complex needs case.
Each individual with complex needs has a unique interaction between their
health and social care needs and requires a personalised response from
services." (p 1)
2.6. Rankin and Regan’s inclusive approach leads us to consider how current service
arrangements and the factors of poverty and exclusion impact on meeting multiple and
complex needs. Moreover, they argue that social care should be brought within the social
inclusion agenda. Neale (2004) similarly stresses that people’s problems cannot be divorced
from structural factors, such as poverty, unsuitable housing, limited education and poor
employment prospects.
2.7. Below we illustrate the range of needs and issues highlighted and how these have
been described and classified by those using the terminology of “multiple and complex
Breadth and depth of need - ‘multifaceted and multiple problems’
2.8. These include people with mental health problems (Keene, 2001), young people,
people with a disability (Mattingley, 2002), and “people labelled with severe or profound
impairment(s). They are likely to have a range of different needs and to require support
from several different services to meet these needs” (Weston, 2000). Additionally, multiple
needs have been identified for homeless people, travelling people, refugees and asylum
seekers and people who have experienced violence or abuse (for example, Rosengard et al,
2000; Bevan 2000a, and b; Harrison, 2001; Social Exclusion Unit, 2004a).
Depth of need - ‘profound, severe or long term impairment or disability’
2.9. Those identified as having profound difficulties include people with severe and
complex learning disabilities and non-verbal communication (Kellett, 2005; McIntosh and
Whittaker, 1998); people with ‘severe and lasting mental health problems’ (Cunningham and
McCollam, 2001) and people with sight disabilities or who are blind and have ‘additional
needs’ (RNIB, 2001).
Presenting multiple problems to services
2.10. The Social Exclusion Unit (2005b, p27) found that 98 percent of services that work
with young people consulted in a survey, “said that young people presented to a particular
service with multiple problems”. Similarly Gross (2002) in relation to children with complex
needs in ordinary primary schools links complex needs with behaviour problems and
implications for teaching practices. Bowen et al (2002) link complex needs with severe or
long term additional needs in education, and Bond (2004) connects complex needs with
‘challenging behaviour’.
Multiple disadvantage
2.11. Various commentators and Government reports highlight the links between high
deprivation, area concentrations of poverty, unemployment, poor housing, problems with
literacy and high risks of the impact of crime (Pantazis, Gordon and Levitas 2006; Social
Exclusion Unit, 2005a and b; Scottish Executive 2005h). Rural location was found to
exacerbate problems for people with complex needs (McCann et al 2005). Additionally,
travelling people may only have access to poor quality sites, while some have literacy
problems, disabilities and health problems, which may be exacerbated by frequent evictions
(Morris and Clements, 2001). LGBT people frequently face problems caused by multiple
disadvantage associated with their sexual orientation as well as with other factors such as
race, disability, faith, economic or asylum status (Inclusion Project, 2003).
Multiple needs relating to age and transitions
2.12. The research has focused on the multiple and complex needs of young and older
people, including at points of transitions, such as leaving home, leaving institutions, or the
onset of illness or disability. For example, Barlowe and Breeze (2005) explored the potential
for teleshopping to alleviate problems of disability and isolation for older people for the
Rowntree Foundation. The Social Exclusion Unit (2005b) defined young people with
complex needs as suffering “disproportionately from a number of different types of
disadvantage, the impact of which results in challenges for service provision”. Here
disadvantage may include: worklessness, lack of training or education, poor health (in
particular, mental and sexual health) or substance misuse.
People who are excluded and ‘hard to reach’
2.13. Many studies researching multiple disadvantage and people’s support needs have
identified a small population who have significant unmet needs (for example, Adebowale,
2004; Watson, 2003; Keene, 2001). Watson refers to people who are ‘marginal, high risk and
hard to reach’.
2.14. This includes some young people who may be involved in substance misuse,
offending and at risk of exclusions. Melrose (2004) identifies the complex needs of young
people who are using substances and who have offended, been excluded from school and/or
been looked after in the local authority care system. Serious substance misuse is seen as
related to the “extreme vulnerability” to exclusion, exploitation and injury, of for example,
young people involved in illicit drug use in Glasgow (Neale, 2004) or to the risk of
homelessness and/ or exclusion from services for older people with chronic alcohol problems
or alcohol related brain damage (Cox et al, 2004), or for younger people using substances.
2.15. The ‘Mind the Gaps’ report by the Scottish Advisory Committee on Alcohol Misuse
(SACDM and SACAM, 2003) refers to “deep-seated and multiple problems which often have
complex and multiple causes” SACDM and SACAM state:
“’Mind the gaps’” is a report about “people with deep-seated and multiple
problems which often have complex and multiple causes” (p11)…“The
evidence also shows that people who experience co-occurring substance
misuse and mental health problems often experience other complex social
problems, such as unemployment, homelessness, violence and childhood
trauma which can occur over long periods of time” (p12).
2.16. In sum the literature leads this review to focus on people with additional rather than
singular needs, on the wider situational and structural influences on these needs, and on the
effectiveness of service responses. Just as Stalker et al conclude from their study of the
experience of children and young people with complex needs in hospital settings, there is no
consensus of definition within the literature, nor amongst professionals, but rather a surplus
of meaning (Stalker et al, 2003). Weston (2000) similarly comments that the term ‘complex
needs’ is potentially ambiguous and contentious.
Note on implications of the terminology for the study report
2.17. Against this background, in this report we shall apply the terms ‘multiple’ and
‘complex’ needs to signify both breadth and depth of need. It is worth noting that one
concern that arose for the research team was the issue of whether describing people as having
‘complex needs’ may be stigmatising. However while the research team considered
replacing the term ‘complex needs’ with that of ‘additional needs’, it was felt that this would
potentially be confusing given the common usage of the term ‘complex needs’ within the
2.18. A strong thread running through the literature on multiple and complex needs is that
service users identified as having multiple and complex needs are seen to be particularly
poorly served by services. Some writers are concerned about this from a social justice and
social inclusion perspective. Others appear to be driven by concerns that these groups are at
the extreme end of a continuum of need and pose the greatest challenges to services.
2.19. Concerns about service responses to multiple and complex needs have an
international dimension, as was illustrated by a recent report on pilot projects in Australia that
were specifically designed to improve outcomes for people with ‘multiple and complex
2.20. This raises issues that are relevant to the current Scottish Executive initiative
involving the launch of several pilot projects in 2006. However it is important to note that
the focus of the Scottish initiative differs in one important respect, which is that the range of
pilot projects addresses a far wider spectrum of needs.
2.21. The Australian agenda generated 2 reports by the Department of Human Services
(2003a, and b) and a literature review on responding to people with ‘high and complex needs’
(Thomson Goodall Associates, 2002). These focus on a clearly defined minority group
whose needs have been identified as extremely challenging to services and who often
experience inappropriate service responses. The rationale for the Australian pilot projects
was identified thus:
“Over the past few years there have been concerns raised by service
providers, clinicians, carers…regarding the difficulty in providing services to
a group of people who have multiple and complex needs. These individuals
include adolescents and adults who may experience various combinations of
mental illness, intellectual disability, acquired brain injury, physical
disability, behavioural difficulties, social isolation, family dysfunction and
alcohol or other substance abuse. Often they are unable to sustain
appropriate accommodation, or require a level of support the current design
of services does not readily allow. Services are often unable to maintain
involvement over time with individuals with extremely difficult behaviours.”
(Department of Human Services, 2003a, p5)
2.22. Using case finding and a nomination process to identify target individuals combined
with case studies of a sample of the target group, the Australian pilots identified and
quantified the target group, and looked at people’s service experiences, gaps in services and
proposed solutions.
2.23. Multiple and complex needs were defined in this literature as:
“Presenting factors that characterize the target population were a
combination of all the following –
Having multiple and complex presenting problems
Having high and complex needs, not met or sustained by existing services
Having challenging behaviours that place individual at high risk to self, service
staff and/or the community
Chronic or episodic behaviours and/or conditions that require long term service
Requiring a service response from 2 or more department programmes (or
criminal justice) areas
Having a specific need for which there is no current service system response
and/or require a current tailored funding package (usually at high cost).”
2.24. While this definition is clearly at odds with the framework proposed by Rankin and
Regan (2004), it suggests a continuum of need and complexity, as is increasingly found in the
policy and other literature. For instance, both the 21
Century Review of Social Work
(Scottish Executive, 2006b) and SACDM and SACAM (2003) adopt this definition.
2.25. Keene (2001) in a research based, literature and analytical overview in relation to
‘clients with complex needs’ (which incidentally was used to inform the Australian
approach), chose to focus on “the most difficult and intractable group who make heavy use of
services”. At the other end of the spectrum of need are considered to be people with a single
‘simple need’. Again this implies a hierarchy of need reflected in patterns of use and
challenges to services. In examining clients with complex needs, Keene focuses attention on:
“Vulnerable men and women with complex health, psychological and social
problems who move more or less continually through social, mental health
and health care agencies, homeless hostels, drug and alcohol agencies and
the criminal justice system. They constitute a more or less disproportionate
part of the caseloads of health, social care or criminal justice professionals.
Many of them are vulnerable, deprived and often labelled as “revolving
door” clients...” (Keene, 2001, p4).
2.26. Similarly the Riddell Committee (Scottish Executive, 1999) examined special
educational needs while it sought to avoid categorising children in relation to their
disabilities. The Committee saw the need to define and recognise the needs of children with
“severe low incidence disabilities” as a subset of children with special educational needs, in
order to target services better. These were children and young people with “pronounced,
specific or complex special educational needs which are such as require continuing review”.
“The degree of inter-agency co-operation, planning and support required to
meet their needs is greater than that usually required to meet the needs of
children and young persons. In addition, they require a high level of
educational support in one or more of the following areas:
The physical environment
The curriculum
The degree of adult support and supervision required
The level of specialist resources, including Information and Communications
Technology, required.”
2.27. The emphasis on multiple and complex needs is increasingly associated with policy
emphases on ‘personalisation’, preventative strategies and cross-boundary working
(Leadbeater, 2004). Additionally, the notion of a continuum of need is reflected in the
promotion of ‘tiered’ services that have the capacity to prioritise and target higher (more
complex) levels of need.
2.28. The vision of the role of social work in the future is perceived as adopting a
“personalized approach in helping those with most complex needs gain control of their lives
and find acceptable solutions to their problems” (Scottish Executive, 2006b). While
emphasising the importance of investing in prevention and earlier intervention, the social
worker’s role is presented in terms of this tiered approach, and it is argued that social workers
should “work directly with people, alongside their families and carers where there are
complex, unpredictable, longer term needs and risks” (p 31).
2.29. In line with a model developed by the Health Advisory Service (1996), Christian and
McGilvary, (1999) describe services to young people with drug and alcohol problems in
terms of tiers ranging from tier 1 basic generic services up to tier 4 for the minority who have
particularly complex needs and including specialist services such as inpatient detoxification,
residential rehabilitation for those with co-morbid disorders and adolescents in secure
provision. The ‘Mind the Gaps’ Report (SACDM and SACAM 2003) adopts a comparable
approach, with a focus on those at the extreme end of need or “people with deep seated and
multiple problems which often have complex and multiple causes”. Their main focus is
people who experience co-occurring substance misuse and mental health problems and who
also experience other complex social problems such as unemployment and homelessness.
The wide spectrum of multiple and complex need
2.30. A key challenge for this review is that it addresses a very wide spectrum of particular
needs and interest groups and therefore a highly diverse body of literature. Within its
limitations the review will take account of service responses to the needs of the following
groups with multiple and complex needs:
People with disabilities and community care needs in general, including older
people; children and young people; people with learning disabilities; people
with mental health problems; people misusing substances and who have health-
related problems; and people connected with the criminal justice system
Gender and sexuality related needs, including those of women affected by
gendered violence, and lesbian and gay people
Minority ethnic-related needs, including those of asylum seekers and refugees
and gypsy travellers
People affected by other aspects of exclusion, such as homeless people; people
leaving institutions – hospitals, hostels and offenders establishments; people in
rural areas, or in poverty and deprived communities.
2.31. These issues are addressed within a Social Exclusion Unit report that points out that
while there are many groups with complex needs, there are 3 main broad and overlapping
groups of people for whom policies consistently seem less effective.
People with physical or mental health problems
Those who lack skills or qualifications, both formal qualifications and broader
basic and life skills
People from some ethnic minority groups, including asylum seekers and
refugees (Social Exclusion Unit, 2004a, p7).
2.32. Subsequently in its 2005 reports, the Social Exclusion Unit further emphasises the
links between poverty, multiple disadvantage and multiple needs.
2.33. The extent to which services have to respond to multiple needs is inevitably
influenced by the prevalence of multiple needs amongst existing or potential clients or
service users. As noted above, there is a lack of consensus of definition and understanding of
what is meant by ‘multiple and complex needs’, which makes quantifying the prevalence of
multiple and complex needs difficult. While few studies have focused on the prevalence of
multiple and complex needs specifically, there are a number of indicators in relation to the
broad spectrum of needs mentioned above covered in the literature on multiple and complex
needs, and this will now be discussed.
2.34. As noted, the literature on multiple and/or complex needs, has a focus on particular
client groups. Correspondently, reference to prevalence rates also tends to consider particular
client groups, for example: people with psychological and mental problems (Keene, 2001),
people with substance misuse and mental health problems (SACDM and SACAM, 2003),
women who have experienced domestic violence (Baron, 2005; Humphreys, 2005), homeless
people (Homeless Link, 2002a and b), people with learning disabilities (Scottish Executive,
2000; McGrother et al, 2001; Ridley, 2004), older people with long term conditions
(Department of Health, 2006a), young people (Social Exclusion Unit, 2005b), people with
particular needs regarding communication (Social Exclusion Unit, 2005a and b) and people
with challenging behaviour (Hogg, 2001; McGrother et al, 2001). Information on prevalence
rates as quoted in these studies is shown in Appendix 2. Further information on clients who
make heavy use of services can be found in Keene (2001) Chapter one.
2.35. Notwithstanding the attempts made in some studies to quantify the proportions of
people with one or more conditions requiring service intervention, a key finding from the
literature review is that there is no clear picture, at either service or strategic planning level,
of service users’ contacts with different services. It has been argued that this lack of
information mitigates against effective planning and responses by services (for example
Keene, 2001; Rankin & Regan, 2004).
2.36. In a study of shared populations in an English county, anonymised use of health and
social care services was mapped over a 3 year period. This tracking exercise concluded that
22 percent of service users were in touch with at least 2 service clusters (a cluster was defined
as different delivery agencies that comprise one branch of social services, such as learning
disability cluster or mental health cluster). It also found, for example, that 41 percent of
social services clients with substance misuse problems also attended mental health services,
indicating that these were clients with ‘dual diagnosis’ (Keene, 2001; Keene & Li, 2005).
2.37. Rankin and Regan (2004) have thus argued that there should be a statutory duty on
the NHS and social service departments to collect data on people who use more than one type
of health and social care service. Keene and Li (2005) point out that such information would
be useful for the purposes of research planning and service development, but not for
individual casework or clinical purposes.
2.38. A notable lack of consensus was found on the key terms used in this literature review,
with terms such as ‘complex needs’, ‘multiple needs’, ‘high support needs’ etc often being
used interchangeably. Broad definitions arguably erode the meaning and usefulness of such
terms. Some authors have drawn attention to how overuse of terms such as ‘quality of life’
render them meaningless. Wolfensberger (1994) for example, asserts that ‘quality of life’
“drips with surplus meaning, and that the current eclecticism causes more confusion than
illumination. Wolfensberger concludes that a concept used in such different ways by
researchers, policy makers and practitioners to mean whatever one chooses, is a “hopeless
term” and one that lacks scientific credibility.
2.39. Recent literature reviews and other documents provide a clear definition of ‘multiple
and complex needs’ as referring to the most excluded people, those at the extreme end of a
continuum of need. This literature review however is not intended only to focus on the
extreme end of need, as this would run the risk of not addressing issues of community-based
prevention and inclusion, as discussed by Rankin and Regan (2004). For the purpose of this
review the terms ‘multiple’ and ‘complex’ will be considered to represent both breadth and
depth of need, and the following chapters will examine literature that covers the general and
particular needs of a wide range of client groups in this light.
There is no consensus of definition of multiple and complex needs in the
literature and the terms are applied variously
It is often assumed that ‘complex needs’ is a ‘given’, or is commonly
understood. Many authors use terms such as complex needs and multiple needs
without defining them
While the use of the terms ‘complex’ and ‘multiple’ separately have been used
to describe a broad canvass of need, the terms singly and combined are also
used to describe the ‘extreme end’ of a continuum of need
The varied ways in which studies conceptualise and apply the terminology of
multiple and complex need reflects the aims and values of researchers and
policy makers.
When these terms are used to highlight intense and interconnected needs
associated with particular conditions, this can be seen to reflect the medical
model and individualised treatment strategies and approaches to meeting gaps.
When used in the sense of multiple and interconnected forms of disadvantage,
this is in tune with the social model focused on inclusion/exclusion, striving to
assess the ways in which structures and systems fail to meet need, and what
institutional and organisational and strategic changes are required to meet gaps.
When used to indicate degrees of intensity, complexity and interconnecting of
need, the terms are used to indicate a framework for policy prioritisation and for
guiding service strategies and resource allocation. How the terminology is used
therefore has implications for how we see the gaps in services, what needs to
happen and best practice.
3.1. Two key objectives of the literature review were to explore awareness of services and
options and the influences on access to services for people with multiple and/or complex
needs. This chapter presents some key issues identified from the literature in relation to the
constraints on awareness and the barriers to accessing a range of services including social
care, health, housing, legal services, transport and so on. While the focus is mainly on the
literature that specifically refers to multiple and/or complex needs, it is recognised that many
of the same issues apply to all service users.
3.2. The first hurdle for anyone accessing services of whatever kind is to gain information
about what services are available, what these can offer, and how to access them. The wider
literature on health and social care is replete with reference to problems of inaccessible
information, poorly advertised services, and low awareness among potential service users of
what services can offer. There is also now a considerable literature identifying aspects of
best practice in relation to improving awareness (Communities Scotland: HomePoint, 2000,
3.3. The literature on multiple and complex needs identifies various constraints that reflect
individual characteristics and dispositional factors, situational as well as organisational
factors, such as the complexity of service systems and inappropriateness of information and
advice provision to diverse populations.
Low awareness of services
3.4. A lack of awareness of what services are available is often compounded by
difficulties experienced in obtaining appropriate and accessible information about existing
services. For instance the Scottish Executive (2006b) in its review of Social Work notes that
difficulties in getting reliable information about such services have been a consistent message
from research. A survey by Mori in 2005 quoted in this review showed that most people
have limited knowledge of what Social Work services can offer and this can result in either
“unrealistic expectations” or in people not accessing services that they need.
3.5. In respect of independent advice, the Department for Constitutional Affairs (2006)
argue that while ‘vulnerable people’ are least likely to resolve problems and disputes, they
are often unaware of where to go for advice or seek it from the wrong provider. This they say
is the result of poor publicity and signposting by and of services, and because services tend to
help people deal with only one problem out of the range they may have.
3.6. Research has found that service users with substance misuse problems often lack
awareness of the range of services available (both specialist and mainstream) and feel that
they do not receive sufficient information about services (SACAM/DM, 2003). The problem
is further magnified for those from black and minority ethnic (BME) communities as shown
in a recent study of Glasgow’s youth addiction services (Ridley et al, 2005).
3.7. Stalker et al (2006) found recurring themes in relation to black and ethnic minority
(BME) disabled people included a lack of awareness of services, as well as poor information
provision and cultural insensitivity within services. Limited research has been conducted
about BME disabled people in Scotland. Further, those from BME communities often have
little or no knowledge of the range of options such as direct payments as an alternative to
providing community care services, with a resultant low uptake (Riddell et al, 2005). A
comparative study of older people from majority and minority ethnic groups (Bowes and
Macdonald, 2000) highlighted a lack of knowledge of services, especially services available
to offer help and support at home, and particularly among Asian older people.
3.8. Although there has been limited research on gypsy travellers, studies suggest there is
similarly low cultural awareness on the part of agencies and low awareness of service
entitlements amongst travellers (Morris and Clements, 2001; Scottish Parliament Information
Centre, 2000).
Good practice point
Studies highlight a need for more outreach work to raise awareness of services among
BME communities and for increasing the profile of relevant services among
professionals such as GPs.
3.9. Keene (2001) found that some service users with complex needs did indeed lack
knowledge of services, but for others this was not the case. Many were aware of the range of
services, some of which they may have used over time, even if such services did not meet
their needs.
Lost in translation
3.10. Finding out what services are available can be compounded by a range of factors
such as low literacy levels, language other than English as a first language, cultural factors
and distance from information centres, and a lack of willingness to recognise or address
problems (Terrence Higgins Trust, 2001; Ross et al, 2004; Social Exclusion Unit, 2005a;
Hodes, 2005).
“People with basic skills and ESOL
needs don’t respond too well to leaflets,
adverts and other written information.” (Social Exclusion Unit, 2005a, p54)
Good practice point
The prevalence of literacy problems in many disadvantaged areas has practical
implications for how agencies can and should communicate best. A range of approaches
will be needed including those not based on written text, e.g. communicating
information about services via local radio programmes.
ESOL refers to English for Speakers of other Languages.
3.11. When English is not the first language, many people find accessing information about
services even more problematic. As a result, many migrants and asylum seekers are unaware
of their entitlement to health and social care services or of how to access them (Terence
Higgins Trust, 2001).
3.12. A review was conducted of users’ experiences and views on interpretation and
translation services in Scotland for the Scottish Consumer Council. This highlighted the
under-use of interpreting and translation services and low levels of knowledge about how
these services could be accessed and funded amongst public services. Moreover, it noted a
low awareness of these services amongst black and minority ethnic groups (Nicholson and
Wallace 2005).
“A lack of publicity by public sector organisations on the availability of
translation and interpretation services contributed to confusion over how to
access such help and who would pay for it”.
3.13. Additionally, this review identified a lack of consistent quality standards in
interpreting and translation services and highlighted various shortfalls, including:
Sometimes the actual meaning is lost in translation, although the document may
read well. Where word for word translations are used this does not recognise
the different meanings that a word may have in particular languages
Some translations use a lot of unnecessary wording or they are presented poorly
compared with original documents
Translators who have lived in the UK for a long time may not be familiar with
current institutions or everyday jargon in their home countries, indicating that
recent émigrés and specialists (in areas such as health or court work) may make
for the best translators and interpreters (Nicholson and Wallace, 2005).
Good practice point
The Scottish Consumer Council research (Nicholson and Wallace, 2005) concludes that
there is a need to develop and implement a co-ordinated national strategy on translation
and interpreting that promotes clarity about service users’ entitlement to these services.
3.14. While cross-cultural issues of interpretation and translation may be considerable for
those whose first language is not English, information about services may get lost for other
groups too. Parallels can be drawn in regard to the need to promote awareness of and access
to services for other groups with multiple and complex needs, such as people with dementia,
people with sensory impairments, and people with multiple and profound intellectual
Good practice point
It is important to remove communication barriers (such as lack of staff time to relate to
individuals), and to pursue creative and skilled communication methods including
alternative or preferred formats for people with sight loss, and using visual techniques as
well as words (Allen, 2001; Clare and Cox, 2003; FSIC Research Team, 2005).
Fragmented advice
3.15. Information and advice can be fragmented, uncoordinated and problematic to access
(Scottish Executive 2004c). Key problems identified by the Department for Constitutional
Affairs (DCA) in its review of the Legal Aid system (DCA, 2005) were that current advice
services tend to treat problems in isolation; advice is hard to access (particularly for
vulnerable people); and referral mechanisms are often inefficient. Additionally, government
websites are frequently hard to reach and difficult to understand. The DCA drew attention to
the fact that unresolved disputes have “serious knock on costs to public services” such as
Health, Police and the Department of Work and Pensions (DWP) which should be
Good practice point - Legal Services
There is a need for a better co-ordinated approach that ensures advice is ‘people-
focused’; that deals with the range of problems an individual faces; that the advice given
is ‘right first time’; and that the advice-giving process enables learning from mistakes,
such as where services have failed to deliver (DCA, 2005).
The DCA strategy aims for partnership working between the Legal Service Commission
and local authorities, prioritising areas of high deprivation to develop co-located
independent advice centres, with a remit to deal with the full range of problems that
people present. Handover arrangements should be co-ordinated between different types
of services, such as telephone advice lines involved in first point contact and specialist
providers of legal advice. Monitoring of advice presentations should inform local
public service performance.
Navigating complex service systems
3.16. Many people, including those with multiple and/or complex needs and carers, find
navigating through service systems complex and frustrating. As a result they are unaware of
what services there are and how these could help them. Not knowing what services were
available was identified by Hardy et al (1999) as a key factor affecting informed choice for
older people with complex needs, and Jarvis et al (2005) in a study on disabled children’s
access to housing comment:
“A major problem for many families is finding their way through to the kinds
of help that may be available.” (p27)
3.17. A key point stressed in the literature, is the need to recognize that current and
potential users of care services have a diverse range of information needs. Additionally,
guides for commissioners and other good practice documents in recent years demonstrate the
importance Scottish Ministers attach to the provision of independent advocacy to enable
vulnerable people to have access to representation of their needs, views and wishes (Scottish
Executive, 2001a).
Good practice point
Providing clear, relevant information, advice and advocacy is essential, as has been
highlighted by Margiotta et al (2003) in relation to older people. The importance of
independent advocacy support to ensure disabled and other people’s views and voices
are heard is increasingly underlined in the literature (Ward, 1998; Scottish Executive,
3.18. Lack of awareness or knowledge of services is only one factor limiting people’s
access to services and support. The United Nations identify the lack of access to services as a
factor that influences ‘absolute poverty’, defining this as:
“A condition characterised by severe deprivation of basic human needs,
including food, safe drinking water, sanitation facilities, health, shelter,
education and information. It depends not only on income but also on access
to services”. (United Nations, 1995, p57 quoted in Gordon et al, 2000, p9)
3.19. While poverty generates support needs, the literature overall illustrates that a range of
dispositional, situational and organisational factors may interconnect and overlap in affecting
people’s access to services.
Factors influencing access
3.20. People engage with services for different reasons and in its report “Improving
Services, Improving Lives”, the Social Exclusion Unit (2005a, p36) identifies 3 arrangements
which influence access for people with multiple and complex needs. These are:
‘Discretionary’ services, where engagement is voluntary, and these include
preventative health and support services and adult education
‘Essential’ services needed by people, such as social housing when homeless, or
residential or nursing care to meet changing care needs, or hospital services after
an accident, and job centres when seeking work
Compulsory services, such as mental health services under compulsory orders,
Criminal Justice Services and Social Work Services, such as when children are
‘looked after’ or subject to protection orders.
3.21. While these different routes and forms of access were clearly evident in the literature
covered, no distinctive implications emerged in this review regarding the experience of
people with multiple and complex needs in respect of these 3 forms of engagement. This
might be worth considering however as a theme for subsequent research.
3.22. However some notable patterns did emerge in respect of the constraints on access at a
more general level. Key situational constraints relate to the dimensions of poverty,
inequalities and location and how these impact on access opportunities. Firstly, poorer
households and communities who are multiply disadvantaged are most significantly
dependant on access to the full range of public services and welfare benefits to improve
opportunities and sustainable solutions (Hirsch, 2004; Somerville and Sprigings, 2005). They
therefore bear the brunt of the consequences of complex, deficient and inappropriate services.
3.23. Inequalities stemming from social class, geography, gender and ethnicity have been
found to be endemic within health services (Acheson, 1998). Emerson (2004) drew attention
to the impact of poverty on the health and well-being of people with intellectual disabilities
and their families, and particularly to the negative impact this has on accessing effective
health services. Variations in accessing health services generally are acknowledged in a
Department of Health White Paper (2006a), especially in relation to responding to the needs
of people from BME communities and in areas of deprivation. People in rural areas face
access problems due to the location of many services, inadequate transport systems,
confidentiality issues and a general lack of specialist services in rural areas (Pugh, 2003).
Disabled people
Disabled people in general experience access problems that are well documented in the
literature, for example, in terms of limited choice in housing and support as well as
transport. A key constraint is the lack of physically accessible accommodation in the
private sector and the high cost of physical adaptations. As a result people with physical
disabilities are twice as likely as others to live in the social rented sector (Milner, 2005).
A recent literature review of services and support for young disabled people in Scotland
(Stalker et al, 2006) identified barriers such as staff attitudes, the nature of the built
environment, poor information provision and failure to use available technologies. The
authors identified various structural and institutional barriers to accessing equal
opportunities in education and to individuals achieving their full potential, although they
also note improvements in some areas, albeit this is slow and patchy across Scotland.
3.24. As indicated above, other barriers may relate to ethnicity, gender and disability. In
terms of gender, the majority of lone parents are female, who like low-income households
generally, are most significantly dependent on benefits and on access to social housing.
Homeless and vulnerable female lone parents are increasingly younger and many have
experienced domestic violence (Smith et al, 2001; Smith, 2004). Recent research highlights
that women who have experienced violence/ abuse often have multiple needs.
3.25. An increasing body of literature emphasises the particular difficulties experienced by
those from black and minority ethnic (BME) communities, whether or not they have multiple
and complex needs. Lack of knowledge and a view that what is on offer does not suit
people’s own perception of their needs were major factors limiting access to services for
older people from BME communities (Bowes and Macdonald, 2000). Additionally, BME
groups face barriers to accessing housing and community care services, as well as education
and work opportunities (Harrison, 2004; Milner, 2005).
Access problems are exacerbated for refugees generally, due to poverty and multiple
deprivation (Oxfam and Refugee Council, 2002), as well as for refugee children (Dennis
2002) and disabled people in refugee and asylum seeking communities (Roberts and
Harris 2002). A Joseph Rowntree Foundation study (Roberts and Harris, 2002) found a
lack of awareness of entitlement to community care assessment and benefits was
Access problems are compounded by very complex entitlements that depend on status as
a refugee or someone with exceptional leave to remain, or as an asylum seeker. In the
case of asylum seekers, entitlements to support in relation to impairment or health
related needs have been lessened by recent legislation. For those who have personal
care needs, sometimes resulting from brain injuries, the impact of being in a strange
country with language difficulties, and the experience of dispersal, means that there is
huge dependence on good quality information and advice about entitlements as well as
support and often advocacy to access required services (Roberts and Harris, 2002;
Roshan, 2006).
3.26. One Somali woman with a disability commented on her own situation:
“I do not ask for any services, I would like to, but I don’t know what to
request or how to initiate a request. I do not know who the service providing
agencies are. I’m disabled and sitting at home” (Roberts & Harris 2002, p3).
3.27. As most workers in this field have little knowledge of community care assessments,
they do not always advocate or signpost services that well. George (2000c) suggested that
some refugees and asylum seekers will “feel uneasy” about contacting services.
3.28. Disabled people from refugee and asylum seeking communities do not access
community care or housing services they need for a variety of reasons (Roberts and Harris,
2002). A key problem is communication: for instance, those who were deaf did not know
British Sign Language prior to arrival and there are few training courses for people learning
BSL through other sign languages. Support for people experiencing language difficulties as
result of brain damage were also lacking. The combination of disabling barriers and lack of
social networks for disabled people in these communities resulted in extreme isolation.
Gypsy travellers
Gypsy travellers historically have had uneven access to appropriate local authority sites,
while their preference for using these has increased over time, reflecting a changing
pattern of travelling. In some rural areas, the sites are at a distance from centres and not
easily accessible. Additionally, the Communities Scotland Regulation Study (2002)
found that travellers are not given good information on how to access services or on
their entitlements, for example in regard to repairs standards (Communities Scotland,
2002, Lomax et al, 2000).
Low aspirations
3.29. Low aspirations and expectations can act as barriers to services for people with
multiple and/or complex needs. Such low expectations may stem from individuals life
experiences and disadvantaged circumstances, or they may reflect that significant others
(including family and professionals supporting them) have low expectations of individuals or
particular social groups, which in turn constrains their life opportunities and access to
3.30. Recent policy addresses the issue of low confidence and self esteem or ‘personal
capacity’ as affecting access to services. The Social Exclusion Unit identified ‘personal
capacity’ as an issue both preventing access to services and as having an impact on service
experiences (SEU, 2005a). One in 10 service providers responding to the SEU consultation
identified lack of confidence as a barrier to accessing and using services, and this was more
widespread in relation to BME communities and disadvantaged communities with low levels
of literacy.
3.31. A study by Burchaldt (2005) found that while ‘young people with complex health and
support needs’ had similar aspirations to other young people, that is, to live independently
when they felt ready, to socialize with their friends, and to do something useful, such young
people were at high risk of being restricted by low aspirations. Three groups in particular
were at risk: young people with mental health problems; those with more severe impairments
or more complex needs; and those who became disabled later on.
3.32. The literature highlights that the extent to which service users are treated with dignity
and respect by front line and other staff is important in determining whether they decide to
use a particular service. People with multiple and complex needs are more likely than others
to report that services stigmatise and discriminate against them. For example, people with
mental health problems report stigma and discrimination in health services, while some
disabled people feel that they have been refused medical treatment because of their
impairment (Social Exclusion Unit, 2005a; Stalker, 2006).
Inflexible access criteria
3.33. Organisational factors can have a strong impact on how easy or otherwise it is for
individuals with multiple and complex needs to access services. Individuals may be excluded
from services because of the criteria applied for service use. This can occur in a number of
ways including applying strict age limits for accessing services resulting for example, in
individuals falling between child and adult mental health services and young people in their
20s being ineligible for particular training programmes aimed at younger people (Social
Exclusion Unit 2005b). Diagnosis or more than one diagnosis required for service access can
result in broader needs going unmet (Scottish Executive, 2006c; Pratt et al, 2006).
Appointments and opening hours can also inhibit engagement with services (Audit
Commission, 2002; Scottish Executive, 2006c).
3.34. Service users often highlight the importance of ease and flexibility of access.
“I started my dialysis at Heartlands Hospital in Birmingham, but it took 30–
45 minutes to get there by car. Now that I go to Ashfurlong it only takes me
15 minutes. Gemma is also now able to do a full day at work because the unit
stays open later and she has her dialysis at 5pm”. (Source: DOH, 2006,
3.35. Humphreys et al (2005) in an international literature review outlining the extent of
overlap between substance use and domestic violence, argues that due to a pervasive ‘silo’
mentality (whereby agencies and professionals are trapped within discrete frames of
reference), individuals’ needs are not being met. For example, despite the overlap of needs,
few perpetrators programmes or services for survivors of domestic abuse address substance
abuse in any systematic way. Just as scarce are drug or alcohol services that explore issues of
domestic abuse for either perpetrators or survivors. In the process of referral or help-seeking
one or the other issue becomes lost.
3.36. Noel et al’s (2005) research into complex health care needs or co-morbidity (defined
as patients having 2 or more chronic illnesses) concludes that although most of the problems
are not unique to patients with co-morbidity, this magnifies and increases the probability that
such problems will occur. Similarly, research by Simons and Russell (2003) found that
people with a combination of mental health and learning disabilities find it problematic to
access the full range of effective services they need. This was particularly true for those said
to be ‘on the edge’ of eligibility criteria for the 2 key sets of specialist services.
3.37. Whilst referrals were accepted by services, commonly there were disputes regarding
respective services’ roles and responsibilities, as well as problems with access to long-term
placements. Joint service developments were said to be rare. As a result, a minority were
placed out of area at some expense usually, while some requiring inpatient care either could
not access such care or experienced long periods in inpatient care as there was nothing else
suitable. Hardy et al (1999) make a similar point about the impact of resource decisions on
accessing appropriate services.
Good practice point
Research by Abbott et al (2005a,b) and Townsley et al (2004) into the circumstances of
families with disabled children with complex needs, suggests that multi-agency working
improves families’ ability to manage children’s complex health care at home and helps
them to access community schools and education.
The availability of such support is clearly a prerequisite to ensuring children who are
‘trapped’ in hospital, despite national policy initiatives to enable care at home and
extension of education to include all children, can access the community support they
and their families need (Stalker et al, 2003).
Service targets
3.38. Increasingly, public services are subject to targets designed to measure service outputs
and these may have detrimental impact on service willingness to work with clients with
multiple and/or complex needs. This is increasingly being recognised in government reports
focusing on disadvantaged groups (see for example Social Exclusion Unit reports, 2005a and
“Targets that are primarily designed to drive up average performance of
public services, or to ensure that more people achieve a specific objective,
may provide weak incentives for providers to help disadvantaged people. Put
simply, providers may focus on those people for whom it is easiest to get a
positive result” (Social Exclusion Unit 2005 a, p16).
3.39. Additionally, differing service priorities and targets can inhibit joint working as
services are reluctant to work outside their own area of responsibility (Social Exclusion Unit,
3.40. The literature highlights a number of issues in relation to the ways in which referrals
may act as a barrier to accessing services. These include a lack of referrals between agencies,
illustrating not only that service users are unaware of relevant services, but so too are the
professionals who might be expected to signpost them. In the absence of up-to-date service
directories, professionals often rely on historic knowledge, which can be inaccurate or out of
date (Scottish Executive, 2006c).
3.41. Secondly, individuals are often given little support to access services they are referred
to, leading to many failing to make contact (Social Exclusion Unit, 2005b). Thirdly, referrals
may be inappropriate. For example, research has found that up to 28 per cent of mental
health referrals from primary care to specialist services are inappropriate (Social Exclusion
Unit, 2004b).
Waiting lists
3.42. Long waiting lists for services have been identified as a major barrier for those likely
to have multiple and/or complex needs (for example, Prewett, 2000; Audit Commission,
2002b; SACDM and SACAM, 2003; Noel et al, 2005; Scottish Executive, 2006). Often
people with multiple and/or complex needs including those with substance misuse issues and
other problems, require prompt access to services, and this is inconsistent with rigid
appointments systems (Scottish Executive, 2003).
3.43. Not having clear points of contact, experiencing long waiting times and the lack of
rapid response were all mentioned as problematic by Onyett (2003) reviewing the
development of team working in mental health. Not surprisingly, in the face of long waiting
times for some services, people lose the motivation to address problems (Audit Commission,
2002b; SACDM and SACAM, 2003; Mental Health Foundation, 2003).
People with drug and alcohol problems
People with substance misuse issues and other problems experience particular difficulty
in accessing services due to long waiting times or inflexible appointment systems
(SACDM and SACAM, 2003; Scottish Executive 2006c).
The problem of waiting times is severely problematic for people with addictions who
need rehabilitation services, and can lead to a loss of confidence in services as the
following quotation from the Audit Commission report (2002b) illustrates:
“They don’t care. You’re put on a list and then they’ll call you up so many months later
and what are you supposed to do in that time? When you want to come off drugs, it’s
then, not 4 or 5 months down the line” (Male, heroin user, aged 40).
3.44. Prewett (2000) examining short breaks/respite care for ‘children with complex or
demanding needs’ found long waiting lists and poor access to short breaks services for the
families of such children. This arose because of a lack of suitable short breaks carers with the
right training and background willing to work with children with additional needs.
Requirements for accessible accommodation and/or specialist equipment and the requirement
for 2 carers in some cases were also barriers.
Limited service options
3.45. People with multiple and/or complex needs often experience inordinate difficulty
accessing any services. Not only do they sometimes not know what services and support are
available and how to access them, in some cases, there are no appropriate services to meet
their particular needs or to ensure they exercise their right to a full life. Either they receive
no services at all or the services they do receive are limited. Such problems are very relevant
to the experience of children with additional educational support needs (Scottish Executive
2005a, b, d), and are also evidenced starkly in the literature in regard to people from BME
communities with additional support needs. The Disability Rights Commission/CERES
(2004) concluded that most services in the UK were not ready to “take on board the complex
needs of disabled people from BME communities”.
3.46. Emerson’s (1999) research found that people with more severe disabilities received
less support from residential care staff; they had less choice; fewer chances of employment;
they were less socially integrated; had a less active lifestyle; had reduced participation in
community based activities; and had increased chances of being clinically overweight. Those
with intellectual disabilities from South Asian communities were at an even greater
disadvantage. Also, young black men with intellectual disabilities were at increased risk of
placement in residential care rather than being supported in the community.
3.47. For a variety of reasons therefore, people do not gain access to the services they need
or finish up in inappropriate services.
Asperger Syndrome
George (2000b) highlighted problems experienced by a teenager with Asperger
Syndrome and his family who needed a specialist residential placement but whose
behaviour meant he could be dangerous to himself and others if placed in the wrong
setting. Because no suitable placement could be found, there was “no option” but to
place him in a residential unit that did not meet his needs and where his behaviour
3.48. Research shows that children with complex needs have difficulty accessing education
despite policies widening access to all children (Townsley & Robinson, 2000; Noyes, 1999).
While short break provision is generally recognised as an important aspect of coping
strategies for families of an individual with ‘profound and complex needs’, a local needs
assessment in one NHS Board area in Scotland (Ridley Associates, 2004) found this type of
support to be rare, and what there is tends to lack flexibility.
Good practice point
In research with practitioners working with young people with complex needs, Worrall-
Davies et al, (2004) concluded that “children and young people with complex needs”
should access services earlier.
3.49. Recent studies show huge inequities in accessing the option of direct payments across
the UK, with England having around twice as many direct payment users relative to its
population compared to Scotland, Northern Ireland and Wales and despite having a lower
proportion of people with long-term illness or disability (Riddell et al, 2005). People with
physical and sensory impairments remain the most common recipients and people with
mental health issues, including dementia, the least likely to access Direct Payments. Another
issue is that these payments have been used mainly to support personal care, which means
their potential to advance social justice agendas as envisaged remain to be realized (Witcher
et al, 2000).
The general literature is replete with references to problems with a lack of or
inaccessible information, poorly advertised services and low awareness of what
services can offer
People from black and minority ethnic communities, refugee and asylum seekers
have particular difficulties in accessing information and advice about services
There are particular shortfalls in interpretation and translation service and a lack
of awareness among individuals and agencies about how to access such services
Many people, including people with multiple and complex needs and their carers,
are daunted by complex service systems
It is increasingly recognised as a principle of good practice that it is important to
provide clear, relevant information and advice about services
A range of approaches are needed to meet the diverse communication needs of
current and potential service users
Independent advocacy is important in ensuring that people with multiple and
complex needs have access to representation of their needs, views and wishes.
Accessing services
Accessing the ‘right’ services is made more problematic by dispositional and
situational factors such as sexual orientation, being an asylum seeker, a drug user,
or having mental health problems and other issues
Poverty and inequality are structural factors that impact on disadvantage in
accessing services. Low aspirations have an impact on the opportunities available
to people with multiple and complex needs and the support to live a full life on
their terms – both in terms of their own low expectations and those of others
Certain groups, such as disabled people, generally experience a number of access
issues or barriers (physical and intellectual)
People with multiple and complex needs may be excluded from services either
because of the criteria governing service use (e.g. age restrictions) or that services
focus on addressing a single issue
Service targets can have detrimental impacts for service willingness to work with
clients with multiple and/or complex needs
There are a number of issues around service referral e.g. lack of referrals between
agencies and inappropriate referrals
Long waiting lists for services pose particular problems for those likely to have
multiple and/or complex needs
For a variety of reasons, many people with multiple and complex needs do not
gain access to the services they need or end up in inappropriate services.
3.50. Given the focus on service pathways, the following table summarises the findings of
this chapter in relation to the stage of the service pathways covered, related processes and
influencing factors and implications for service responses. A similar framework will be
applied at the end of Chapters Four and Five.
Table 3.1. Awareness, experience of access and service implications
Pathways stage Processes/influencing factors Service requirements
Low awareness
Service ethos and model
Availability of information
Accessibility of information in
different formats
Service approach – proactive or
Complexity of service systems
and how communicated
Promotion and information to
ensure/maximise awareness
Information in different
formats reflecting diversity
Information link workers or
Jargon free information
Reaching out to some groups –
e.g outreach with BME young
Accessing Service Individual needs & preferences
Aspirations of and for people
with multiple and complex needs
Service ethos, culture, systems
Diversity of need
Accessible buildings
Suitability of resources
Flexibility of approach
Access to health services
negatively affected by social
inequalities, cultural differences
in health beliefs and behaviours
and poverty (Emerson, 2004)
Transparent referrals system
and clear criteria
Early support for families with
children with complex needs
An ethos of involvement
throughout the organisation
Understanding of role of
independent advocacy
Adopting a social model of
Suitable locations
Accessible building
Accessible and flexible
Flexible opening hours
Trained, experienced staff
Attention to particular needs
Positive, user-friendly
Interpretation/ translation
4.1. Having considered issues of access to services for people with multiple and complex
needs, we now focus on their experiences of pathways in and through services. The themes
covered in this chapter relate to service users’ experiences of care and support, the impact of
transitions, the issue of what is called ‘non-engagement’; patterns of participation and
service outcomes.
4.2. Some commentators like Rankin & Regan (2004) sound the alert that those who are
most disadvantaged and who have the most complex needs have the poorest experience of
services and are at greatest risk of their needs not being met - the ‘inverse care law’ (Tudor-
Hart, 1971). While this may be true it should be recognised that people with multiple and/or
complex needs are not the only groups to be disadvantaged by deficits and gaps in services.
Barr et al (2001) found that users of community care services share concerns with others in
the community about many aspects of public services, including transport, safety, planning,
leisure opportunities, accessibility and participation. Exclusion is a “powerful common
denominator between care users and others in the community” (Barr et al, 2001 p.5).
4.3. Broadly, the quality of service users’ experience and outcomes relate to the
complexity of systems of provision, how these are commissioned, co-ordinated and
resourced, the nature of staff practices, partnerships and joint work and user involvement and
4.4. The literature overall illustrates that while 20 years ago many people with multiple
and complex needs were accommodated and cared for in institutional settings, policy
movements in community care, criminal justice, children’s services, housing and
homelessness have promoted more diverse, community-centred systems of provision. One
consequence is the multiplication of services and professionals involved in people’s lives.
For someone with both mental health and substance misuse problems relevant professions
may include, for example, a social worker, a GP, a housing officer, support workers, an
occupational therapist, mental health services, and/or addiction services (Petch et al, 2000,
Parts 1 and 2). A similarly wide spectrum of service involvement has relevance to older
people or people with a disability who have additional needs, or to people resettled from
criminal justice establishments, younger people who have been in care, or homeless people or
refugees who have been resettled in the community.
4.5. Recognising that many people identified as having multiple and complex needs may
be in contact over time with several professionals, at various stages they may have to undergo
a formal process of assessment. While generally, the assessment of a person’s needs is
pursued as a matter of good practice, it can also be required by statute or as a condition of
funding, as in the case of community care, criminal justice, and Supporting People services,
for example.
4.6. Many service users and carers appear not to be familiar with either their entitlements
to assessment, or with its role in the support planning process (Scottish Executive, 2001b,
2002a). This low awareness is potentially disempowering as assessment has a gate-keeping
function. As the Guidance itself identifies, “assessment is not an end in itself. It is a
necessary means of accessing support and services” (Scottish Executive, 2002a).
4.7. People may feel daunted by the assessment process, because they are concerned about
its outcomes, or they experience it as intrusive, or they are traumatised. Initial assessments
by whichever agency are therefore often unlikely to identify issues relevant to multiple and
complex needs, which imply ‘breadth and depth of need’ (Rankin & Regan, 2004). It has
been pointed out that “psychological and social problems may not be presenting problems”
(Keene 2001, p.4), and that “the most vulnerable service users may be the least able or
willing to articulate their needs and the least confident in accessing services” (Edwards,
2003). However, repeated presentations or referrals and contact over time, may allow the
trust that is needed to enable a deeper assessment to be developed.
4.8. At times the professionals conducting assessments may lack awareness of particular
configurations of multiple and/or complex needs, or may not understand their import and
impact. Such low professional awareness risks inappropriate assessments and emphasises the
need for staff training and cross-boundary working, which will be discussed in Chapter Six.
Complex needs and complex assessments
AIDS-related neurological and psychiatric disorders can be confused with Alzheimer's,
and the pneumonia commonly associated with HIV (PCP) is sometimes mistaken for
lung disease and heart failure (Age Concern/ Institute of Gerontology Report “Breaking
the Silence”, quoted in Community Care (George 2000d).
Beyond difficulties with medical diagnosis, alcohol related brain damage (ARBD) can
be hard to distinguish from other causes of brain damage such as head injury or early
onset dementia
. As those affected are a diverse group, who may live in the community
or in inappropriate health or social care facilities, ARBD is often ‘an invisible condition’
that may persist until a crisis occurs (Cox et al, 2004). Cox et al further suggest that a
person’s needs may be categorised and packaged in a way that makes sense to service
systems, but not to the individual or those who support them.
4.9. A further issue relates to the role that stigma can play, on the one hand in inhibiting
people’s willingness to discuss their needs with professionals and on the other in the
approach and response of the professionals conducting assessments.
In “A Fuller Life” (Cox et al, 2004d) defines dementia as a variety of illnesses and conditions which result in a
global impairment of brain functions and a decline in intellectual functioning, personality changes and
behaviour problems.
Older people with additional needs – impact of stigma and insensitivity
Age Concern alerts us to the plight of older people who are lesbian or gay and who are
confronted by illness or disability (Manthorpe & Price, 2003), or by needing to go into
care. Such older people may not communicate their sexuality because they fear
prejudice amongst staff and other service users (Sale, 2002).
“Overwhelmed by fear and the risk of stigma, so they were often isolated emotionally
with little personal support. And even if their peer group knew about their condition,
they didn't know how to offer support. Few approached social care professionals, or
asked for services because they thought others were more deserving. This makes it
difficult for social services departments to provide effective and appropriate services
unless efforts are made to reach out to people who feel unable or unwilling to seek help”
(Age Concern, 2002).
4.10. Other problems identified with assessments included:
Though the case for sensitive, participative and comprehensive assessments is
stressed in the literature, the reported experiences of people with multiple and
complex needs imply that such criteria are met inconsistently
People may be at risk of ‘falling through the service net’ because of multiple
assessments (Rankin & Regan, 2004; Keene, 2001; Bevan, 2003; Scottish
Executive, 2004)
Joint assessments are underdeveloped in response to multiple and complex
The blocks and waiting times that service users face in relation to accessing or
sustaining the services that they need occur at various stages (Edwards, 2003).
Risks of failure – substance misuse
People with a drug or alcohol problem who want their support to continue beyond the
originally specified period, can find this may not be funded by the care manager
following a care plan review. If they relapse it can be hard to access further support
(Edwards, 2003).
Fragmented service responses
4.11. A metaphor used in a Turning Points publication captures the experience of many
service users:
“Imagine trying to get your car fixed after it breaks down and finding that you
have to take it to a different garage to fix each part – one to change the brake
cable, another to fix the windscreen, a third to change the tyres and so on.
Even worse, each garage is in a different area and none of them share
information, so you have to repeatedly explain the problem and fill out
separate forms at each visit” (quoted in Hudson et al, 2005, p.13).
4.12. Various impacts of service fragmentation on service users’ experiences have been
Professionals work “in isolation from each other” (Keene, 2001 p6; Northmore,
1999; Rankin & Regan 2004)
Service users may be in contact with and receive services from varied agencies
and staff – “it can be a very crowded market” (Edwards, 2003)
Agencies’ responses are often divergent and limited.
Substance misuse and additional issues
Someone with serious drug dependency may be treated by their GP as a medical
problem, by a drug agency as needing treatment of harm reduction and by the police as a
possible threat to public order. “Little, if any, account is taken of problems presented by
the same people to other agencies” (Keene, 2001, p3).
Multiple, chronic health conditions
One American study (Noel et al, 2005) focused on caring for “patients with multi-
morbidity” or multiple, chronic conditions. This identified 6 key problem areas:
physical symptoms; psychological reactions; relationships; work and leisure; multiple
medications; and problems in interacting with health-care providers or the health-care
system. These problems were compounded by long waits for referrals, poor continuity of
care between clinics, problems in accessing urgent care, multiple appointments and
problems communicating with providers.
4.13. The authors concluded that many of the above problems were not unique to people
with multiple needs, as people with a single chronic illness may take more than one
medication, experience side-effects, have difficulty communicating with their provider, or
experience poor continuity of care. However, facing multiple issues appeared to magnify
people’s problems or increase their incidence. Moreover, people may get ‘stuck’ in using
inappropriate services (Rankin & Regan, 2004; Keene, 2001; Bevan, 2000a and b, 2003).
HIV and sexuality
A Terrance Higgins Trust Report (2001) suggests that HIV agencies are often ill-
equipped or unwilling to meet service users’ mental health needs, while mental health
agencies cannot see beyond their HIV and refer them back to HIV services. HIV
services may misinterpret mental health problems as bad behaviour and simply exclude
a difficult service user rather than working with local mental health services to help
4.14. In terms of its cultural impact fragmentation is seen to generate a ‘silo mentality’
which restricts professionals’ frames of reference and responses. Structurally it can cause a
‘revolving door’, whereby a person persistently re-presents with minor immediate needs, but
underlying difficulties are never tackled (Keene, 2001).
Medical model
4.15. Some authors stress that ‘the medical model’ can stigmatise and restrict people’s life
opportunities (Morris, 1996). Disability from this perspective is seen as a pathological
physical/ medical condition that determines a person’s needs. This approach is associated
with an emphasis on clinical diagnosis (Rankin & Regan, 2004) and on medical and
institutional responses to the support needs of people with disabilities. People’s needs are not
seen as a whole.
4.16. The ‘social model’, in contrast, views ‘the problem’ in terms of the ‘disabling
barriers’ that current social arrangements and institutions place on the living and support
options for disabled people, whether in the form of “negative attitudes or physical, social or
economic factors” (Morris, 2004, p.6).
4.17. While the medical model predominated historically, the social model has increasingly
gained acceptance, so generating more ordinary living options (Oliver, 1996; Oliver and
Barnes, 1998; Priestly, 1999). However concerns persist about the impact of the medical
model on outcomes for people with disabilities and multiple needs. Rankin and Regan
(2004) point out that medical diagnosis (rather than the condition itself) is considered by
many voluntary sector participants as a catalyst to social exclusion, as a purely clinical
diagnosis “may make it impossible to respond to complex needs”. They quote the Head of
MIND’s legal services:
“The fundamental point is that discrimination arises because of the
diagnosis, not as a result of the condition itself” (Rankin & Regan, 2004,
Dual diagnosis
4.18. For ‘dual diagnosis’ clients, the medical perspective may dominate outcomes to the
extent that social support needs are undermined. Outcomes may be delayed or limited, for
example, if there is straightforward psychiatric intervention rather than a social model of
support (Rankin & Regan, 2004).
Dual or multiple diagnosis
A study of the experience of people with physical impairments who also have mental
health support needs found that “very few mental health professionals took account of
medication prescribed for a physical condition when treating mental illness” (Morris,
2004 p.10). One interviewee said, “I have to go to one town for my body and another
for my mind”, and another reflected the views of many, saying: “I’d like to see an
assessment which doesn’t just do physical disability or mental health or whatever. That
looks at the whole” (Morris, 2004: p 55).
Edwards (2003) uses the example of one service user who suffered from anxiety,
paranoia and a lack of confidence, who was seen by a psychiatrist and a CPN for 8
years, before they gained access to the practical support they needed to tackle everyday
tasks in the community. It was found that many service users felt it took a long time to
get the type of services they need that might make a real difference.
One quantitative study covered 348 people with a learning disability and mental health
problem who have long-term support needs, some of whom were found difficult to
engage by services. Although mental health services do work with this group, the study
found that inter-service disputes arise about roles and responsibilities and that there can
be problems in accessing long-term placements (Simons & Russell, 2003).
Positive experiences of active outreach
4.19. Some service users with dual needs reported very positive experiences of follow up
services of for example, being listened to and followed up by outreach workers in specialist,
targeted services:
“I would say that (this project) is probably the best thing that’s happened to
me in a lang time. They listen tae ye. If you’ve missed an appointment they
will phone you up and ask us up. You get a sense that they care mair aboot ye
there. Now I’m gang doon there 3 times a week to get the Reiki and
acupuncture” (Scottish Executive, 2006c: p 43).
“I think the co-morbidity team is the best because they get a hold o’ ye and
keep pursuing ye until they get ye. Some days I don’t come but they’re
persistent tae get a hold o’ ye and they go looking for ye” (Scottish Executive,
2006 c: p43).
Limited service vision
4.20. Even if someone’s multiple needs are known to agencies, professionals may use tried
approaches rather than seek creative solutions that meet people’s needs (Keene, 2001; Rankin
and Regan, 2004). For example, a traditional day centre service may be presented as the only
option for people with a learning disability and additional mental health or addiction needs
(Clark, 2001). Alternatively, we have seen that some services exclude people with multiple
and complex needs for reasons of limited vision or limited resources.
4.21. A recent study points to a serious lack of integrated effective service responses to
women who have suffered domestic violence and use drugs or alcohol as a coping strategy
(Humphrey et al, 2005).
‘Silo’ responses in regard to domestic violence
Of 60 women using crack cocaine, 40 percent reported they had been regularly
physically assaulted by a current partner and 75 percent assaulted by a current or
previous partner. Half had needed hospital treatment in the past year due to partner
violence (Bury et al, 1999).
Despite this extreme situation, few perpetrator programmes or services for survivors
address substance use systematically. Just as scarce are drug or alcohol services which
respond to domestic abuse issues for either perpetrators or survivors. In the process of
referral or help seeking, one or the other issues becomes lost (Humphrey et al, 2005).
A survey of Women’s Aid and related refuge services found “grossly inadequate”
emergency accommodation provision for women with high support needs, and that
existing provision was inflexible. Refuges were often unwilling to take women without
“parallel support” from other agencies. Only 8 percent of refuges said that if space was
available they would admit a woman with a substance misuse problem or a mental
health problem (Baron, 2005).
Inadequate and insensitive responses compound the stigma experienced by people with
multiple needs. ‘Non-refuge’ providers may question women’s credibility, be unable to
provide suitable support, or be seen to threaten the loss of their children. Such responses
are seen to reflect a poor appreciation of domestic violence and that services may only
respond to presenting issues (Baron, 2005).
4.22. Baron argues for a 3-pronged strategy for improving the response.
Refuges need to be resourced better
Some specialist refuges may be required
Training and guidance are needed for mental health and substance misuse
services to move people away from “the narrow focus on their particular
specialty and respond in a holistic way to client’s needs”. Women’s Aid has
produced a series of Guidance Notes to this end.
Care management and co-ordination
4.23. Noel et al (2005) point out that, although the impacts of fragmentation are not
peculiarly experienced by people with multiple and complex needs, their consequences may
be magnified. Both care management and related examples are considered in this light.
4.24. Service users are often surprised to find that services are not co-ordinating their
respective inputs or not sharing information to avoid duplication of effort. The Scottish
Executive’s “Modernising Government” report (2003a) quotes an old man who reflected,
“So that’s why the District Nurse always seems to turn up just when the Home Help is taking
me to the Day Care Centre for my carpet bowls” (p3).
4.25. Another service user commented:
“I just don’t understand why there can’t be one file that’s got all the
information on you and that goes from place to place…What’s difficult about
that?” (Scottish Executive Effective Interventions Unit, 2003)
4.26. Formal care planning frameworks are commonly developed where intensive needs are
identified, or there are legislative provisions that require this, such as pathways assessments
and plans for young people in and leaving care
, and the care programme approach for people
with serious mental health problems “who also have complex health and social care needs”
(Scottish Executive, 1996). Good practice requires that care planning focuses on ensuring
The Support and Assistance of Young People Leaving Care (Scotland) Regulations 2003
integrated care pathways (Scottish Executive 2003c, 2004b,d) and that service users are
involved in support and care planning processes throughout (Scottish Executive, 2004a).
4.27. On the face of it, care management, which was developed in the 1970s in the U.S.A as
an attempt to improve co-ordination of care and access to fragmented services, should be
highly relevant for people with multiple and complex needs who depend on many services,
and are at heightened risk of admittance to hospitals or other institutions. Indeed early
guidance from the Social Work Inspectorate also suggested that groups with complex needs
be given priority in care management.
4.28. Scottish Executive guidance (2004a) noted that care management had “lost its way”
and that an earlier review found inconsistency in policy and practice in care management
across Scotland (Stalker & Campbell, 2002). The review highlighted problematic responses
to complex and multiple needs. Though most workers holding ‘complex’ cases were
qualified, a quarter had not received any training in care management, and ‘intensive’
caseloads were considerably higher than optimal. Of particular concern was that only 16
percent of the care managers were located in multi-disciplinary teams, while only one
authority had budgets devolved to care managers. A separate review found a similarly
uneven implementation of care management in England (Marlowe et al, 1999).
4.29. So far it appears that care management has failed to realise its potential for a positive
response to complex and multiple needs. Most recently it has been redefined by the Scottish
Executive as “intensive care management” to be targeted at people with complex needs or
with frequently or rapidly changing needs (Scottish Executive, 2004a). Additionally,
intensive care management is seen as being aligned to single shared assessment, which is
discussed later (see paras 6.39. and 6.40. and Appendix Three).
4.30. Experience since 1990 would suggest that financial control and managerial agendas
have prioritised care management’s administrative and gate-keeping functions at the expense
of advocacy and collaboration to meet needs. Various new roles proliferate - such as
community matrons (DOH, 2005a, 2006). However, it is very unlikely that these will resolve
the underlying tensions. It is early days to comment on whether the Supporting People
programme operates any more holistically and flexibly in its response to meeting multiple
and complex needs.
Financial constraints on support planning
4.31. Care managers considered that the key factor affecting assessments and service
responses was that of increasing pressures on budgets (Marlowe et al 1999). Choices about
initial services or later changes in providers depended less on service users’ and carers’ views
than on the existing budget position and whether or not ‘in-house’ services were available.
Notably it was found that though service users find the care system complex and confusing,
they largely accept the resource constraints on care managers (Marlowe et al, 1999).
Older people
Older people with the most complex needs felt pressured to enter residential care,
because it was too expensive to maintain them in their own home. Additionally, budget
pressures resulted in those with lower support needs (such as for cleaning and other
practical support) not getting this (Hardy and Young, 1999, p488).
4.32. Other constraints on access to key sources of funding for support for independent
living have been identified. Regarding the benefits of the Supporting People programme
Goldie states “many people with multiple needs have been assisted in ways that would not
have been possible before” (Goldie, 2004a, p1) and “one of the biggest reported benefits of
Supporting People has been to provide assistance to many people on the margins and to bring
people excluded from services some limited support” (Goldie, 2004a p2). Successes of the
Supporting People programme for people with multiple issues have included:
Providing ‘floating support’ for people living independently
Flexibility in staffing levels depending on levels of need.
New legal rights for residents who become tenants
Additional personal income for tenants
Greater independence and responsibility for residents
Freedom to make building and refurbishment changes.
4.33. Overall budgetary constraints in the context of high demand have resulted in
difficulties in accessing higher levels of Supporting People funding required to meet
additional support needs (Goldie, 2004, a and b; Watson et al, 2003). Goldie concludes that
‘Supporting People’ has been “a victim of its own success” (Goldie, 2004b).
Lack of consultation and choice in care planning
4.34. Hardy and Young’s research was interested in the extent of user choice in the care
management process for older people in 4 local authority areas. Only one of the 28 service
users interviewed remembered being asked about her satisfaction with the proposed care
package. None of those receiving home care had been given a choice of service providers.
One carer said:
“We didn’t really know anything about it. It was just a matter of they said,
‘so and so will take care of this and so and so will take care of that’ and at the
time I was just glad of the help” (Hardy and Young, 1999, p488).
Communication barriers limiting participation and choice
4.35. For people with learning disabilities and ‘high support needs’, or ‘profound and
multiple needs’, there is a high risk of exclusion from decision-making because of
communication difficulties (such as no verbal communication) and/or challenging behaviour.
This was most notable at times of transition (Beamer & Brookes, 2001).
Learning disabilities
Choices offered to people with learning disabilities and high support needs tended to
relate to day-to-day rather than life-changing matters – for example, where to live, who
to live with, or leaving school. They also took place at times of transitions - leaving
hospital, leaving home, leaving school, major loss or illness (developing dementia).
In practice, decisions were influenced by established practice as well as by
professionals’ views on the client’s ‘best interests’, on risk adversity and available
resources. Rarely was the individual with high support needs at the centre unless an
active parent, supporter or circle of support put him there (Beamer & Brookes, 2001).
Contested territory and poor outcomes
4.36. Service users and/or their carers often disagree with professionals’ assessments of
their options (Keene, 2001). Whereas many service users are accepting of resource
constraints, in other instances disagreements arise between providers and service users if
options are constrained by resources or by limited vision – for example if professionals
favour residential care rather than ordinary housing and support for an older person, or a ‘dry’
rather than a ‘wet’ facility is identified for someone with alcohol problems, or a child is taken
into care (Rankin & Regan, 2004). Keene states:
“clients often see professional assessments as unhelpful, and professional
interventions as inappropriate, restricted and time-limited. This disparity
forms the main obstacle to effective intervention” (p113).
4.37. Several studies found that assessment and support was problematic because the
person was unable or did not want to accept help for various reasons, and both persistence
and joint work were required on the part of service providers. In other instances the differing
preferences of professionals and service users reflected the squeeze of limited resources.
4.38. Another scenario, given fragmentation, is that professional assessments diverge
because of different approaches. The net effect is disjointed assessment and planning
between housing, social work, health or voluntary sector services.
Children with disabilities
A Joseph Rowntree Foundation study surveyed parents of children with severe
disabilities, obtaining a 60 percent response rate from around 3000 parents, many of
whom experienced housing problems.
It found that housing needs were rarely taken into account in Children Act needs
assessments, that only a minority had help from statutory services to address housing
needs and no single department or agency was responsible for addressing needs. Three
quarters had not had needs assessed by an occupational therapist. Links between mental
health and learning disability services appeared to be under-developed (Beresford &
Oldman, 2002).
4.39. The literature contains an abundance of examples of problematic assessment, support
planning and provision in the context of transitions. Often these delayed people gaining
access to the services that they needed or limited their rights.
4.40. The need for ongoing assessment and reviews are critical in planning person centred
support, and particularly in the context of transitions. Some problematic transitions that may
affect people with multiple and complex needs, include:
The onset and development of long-term or chronic conditions, such as multiple
sclerosis, HIV Aids, Huntingtons, dementia, or traumas such as brain injuries
(George, 2000a; Terrance Higgins, 2001; SHA, 2006; Hudson, 2005)
The uneven development of conditions such as autistic spectrum disorders
(ASD) or Aspergers (George, 2000b)
Age-related transitions, such as when young service users have to start using
adult services; or that determine when young people have to move on from care
The onset and development of substance misuse-related conditions, including
those related to severe mental illhealth or alcohol related brain damage (Cox et
al 2004; McRae & Cox, 2004; Baron, 2005)
The sudden illness or death of a relative or carer can be at the root of intense
distress that compounds existing health problems or disabilities or creates new
ones. This creates risk and vulnerability to other problems and can result in
crises such as homelessness (Crane, 2004)
Leaving criminal justice establishments, hospitals or large hostels (Petch et al,
2000; Rosengard Associates with Scottish Health Feedback, 2001)
Having to flee home or country of origin due to violence or threat of violence or
abuse (broadly defined), as in the case of young unaccompanied asylum seekers
and asylum seekers and refugees more generally (Hopkins and Hill, 2006;
Cemlyn and Briskman, 2003, Okitikpi and Aymer, 2003; de Lima, 2005; Hodes
and Tolmac, 2005). Other migrants seeking work may have left circumstances
of major poverty and hardship and have language difficulties (Edgar et al,
4.41. Positive experiences of support in the context of transitions are evident where services
have been targeted to respond to particular needs (e.g. age, gender or shared circumstances)
and operate in a person-centred and holistic way. Examples will be covered in Chapter Six.
Moving out
4.42. Moving on from short or long-stay hospital services appears to be seriously
problematic for those who have additional or multiple needs.
Children with disabilities moving from hospital to community
Stalker et al’s (2003) key study focused on children with disabilities and serious medical
conditions who were ‘trapped’ in hospitals in England and Scotland despite policy
initiatives to enable care at home and to equalise access to education. The study covered
a range of ‘impairments’ (physical, sensory, emotional, cognitive) although not
psychiatric diagnosis. There was little knowledge gained about children from ethnic
minority groups in this or other studies cited.
Planning and resource gaps
4.43. It was found that the pattern of delayed discharge was exacerbated by the discrepancy
between advances in medical care, which could speed up treatment and maintain lives better,
and the inadequacies of the social and community based support on offer within the
community to meet children’s needs on discharge (Stalker et al, 2003). Though joint working
was often ineffective between social work, education and health, for example, innovative and
collaborative practice did emerge. The net effect was that children and young people often
had long waits in hospital for care packages, accommodation and adaptations in the
community. The rise in those supported at home has not been matched by additional funding
for community based services. (p27) Overall, parents were important advocates for children,
though they had a low awareness of complaints procedures even if they had received a copy.
4.44. Similar issues emerged in a study of adult hospital reprovisioning and resettlement in
the fields of learning disability, mental health and physical disability in Scotland. (Petch et al,
2000). Both studies indicate that the problems are not about ‘difficult’ clients but about
‘inadequate services’ (Morris, quoted by Stalker et al, 2003). However although Petch et al’s
study found that “for the large majority the outcomes are highly positive”, it highlighted the
extreme difficulties faced during such transitions.
“Reprovisioning and resettlement programmes have a considerable emotional
impact. Their planning and organisational momentum creates uncertainties
and instability for the individual hospital residents who are to be resettled in
the community. People often face considerable uncertainties and fears about
their future lives, they have their needs assessed and re-assessed by different
professionals, and they may be moved between wards and hospitals as service
provision contracts at the hospital end. Timescales, resources, planning
requirements and contingencies can mean individuals experience a significant
level of unsettlement and disturbance as part of the process (Petch et al, 2000,
4.45. Beyond the problems identified earlier in regard to navigating complex service
systems, some research identifies ‘revolving door’ scenarios associated with particularly poor
outcomes. Essentially, individuals access several different services, while none of them
properly tackle multiple and complex needs.
4.46. People defined as having ‘multiple and complex needs’ by the Human Service
Department of Victoria, Australia, had become involved with a wide range of services
“without clearly established case management and funding responsibility” (2003a, p5). Often
they could access services but were referred between them as they do not easily fit their
legislated or service eligibility criteria:
“Services may avoid acceptance of ultimate responsibility since each agency
can claim that they are not mandated, funded or equipped to accept such
responsibility…” (p5).
4.47. Again this has resonance with the UK experience where people who have substance
misuse, mental ill health, offending and homelessness histories may both have accessed a
number of services and experienced exclusions from services. Keene (2001) argues that
many services focus on particular needs rather than on wider problems and that the lack of
appropriate alternative or move on accommodation and support services then serves to
compound problems and difficult behaviours for example, after being in prison.
The traditional ‘revolving door’
John, a homeless man in his 40s who was involved in chronic alcohol misuse slept rough
for around 7 years in urban and rural areas, interspersed with stays in direct access
accommodation - "alcohol blocked the hurt"…. "I became a loner, very unkempt ….like
a tramp.” He stayed rent-free in a ‘dry house’ for a year doing the catering, but had to
leave after a drinking binge. Later he stayed for 8 months in another dry house, where
he liked the rural setting and went fishing, but “blew it again”. Another hostel stay
followed until he was admitted to hospital seriously ill. He left hospital in a wheelchair
and was accommodated by the local authority before going on to alcohol rehabilitation
(Rosengard et al, 2002).
Peter a young homeless man interviewed in a seaside town for a research project on rural
homelessness, had been homeless on 8 or 9 separate occasions and was using drugs. He
had left home at 16 because “me and me step-mum weren’t getting on” and he had
stayed in London, in Scotland and in the South of England. He slept rough in towns and
rural areas and he used survival skills developed during a short period in the navy. His
life-style led to several periods of imprisonment (Cloke et al, 2002).
4.48. Other ‘revolving doors’ relate to unsuitable move on arrangements from institutions.
Revolving door following hospital resettlement
One study of 2 groups of people with learning disabilities and ‘challenging behaviours’
– ‘hard-to-place’ hospital residents and a group whose placements broke down – shows
how resettlement arrangements can be fragile when planning and joint working are
inadequate. (Sergeant et al, 2004) The study concluded that: a single model response
was inadequate; support must be individually planned and flexible; high levels of
support are required but are expensive in dispersed tenancies, and a partnership is
required between providers, individuals and families.
Petch et al’s study (2000) similarly found that assessment in the institutional setting at
times led to solutions that did not meet needs and were unsustainable, such as an
individual rehoused into a house in a third storey of a tenement who was unable to
negotiate the stairs. His disabilities had not been identified as he had stayed in a single
storey hospital building.
Equivalent poor outcomes associated with revolving door scenarios were repeated in respect
of different client groups with multiple and complex needs covered in this study.
4.49. A pattern of ‘non-engagement’ or ‘non-compliance’ with services has been
considered within the literature, with some studies attributing this to individuals’ multiple
problems and lack of motivation, while others consider ‘non-engagement’ as reflecting
poorly designed, inappropriate services. Rankin and Regan stress that non-engagement is
best seen as a poor service outcome attributable to inappropriate services, rather than simply
to service user ‘choice’ (2004: p 97). They apply the ‘inverse care law’ to explain exclusion;
in other words those with greatest needs are at greatest risk of getting the least services,
largely because multiple interconnected needs are not responded to with a ‘whole person’
4.50. Potential influences on non take-up or rejection of services at different stages may
include the following patterns:
Service users do not trust professionals due to prior experiences or are inhibited
for personal reasons or embarrassment (Keene, 2001)
Some service users (and carers) have very low confidence in the likelihood of
gaining either useful advice on options, or positive outcomes, with low
expectations often found within particularly disadvantaged communities.
Additionally there are the asylum seekers/ refugees with language difficulties
(Nicholson and Wallace, 2005) or who have been traumatised and/or have had
experience of “a punitive regime of rigorous investigations and insecurity”, as
well as ‘grudging services’ (Pearl & Zetter, 2002)
The culture and communication style of a service may leave people feeling
uncomfortable or put off, such as when there are cultural insensitivities in
communication with minority ethnic households, or when service users feel
probed too deeply. (Rosengard et al forthcoming, 2006)
Tightly structured appointment systems are not consistent with chaotic lifestyles
(young people, homeless people and people with mental health issues)
(Edwards, 2003, Rankin and Regan, 2004)
At different stages people are not ready to acknowledge or address addictions or
mental health issues (Keene, 2001)
Personal crises destabilise people, so that non-compliance and sometimes
serious incidents occur, resulting in further cycles of exclusion, exacerbated
poor health or injuries, and disengagement or institutionalisation (Rosengard et
al, 2002).
4.51. The following example was addressed in a topical Mental Welfare Commission for
Scotland Report (August 2006). It stresses the importance of strategic and co-ordinated care
planning and joint working to prevent cumulative problems for people with Alcohol related
brain damage (which is increasingly referred to by professionals as ARBD).
An extreme case of risks associated with Alcohol Related Brain Damage
The case of “Mr H” who had used services for over 20 years in relation to his chronic
alcohol abuse and its problematic impacts, was investigated by the Mental Welfare
Commssion. Mr “H” was eventually suspected as having Alcohol-related brain damage
and Guardianship was granted due to dementia. His history involved multiple uses of
different services, interspersed by periods of ‘non-engagement’, as well as behaviours
that resulted in services not responding, until neighbours reported that he was starving
and his house was infested. He was found to be living in human degradation.
Mr “H”s case highlights the high risk that mental and physical health and other problems
such as acquired brain injury, may be masked by alcohol misuse histories and related
uncooperative behaviours. It reminds us that if professionals simply accept that people’s
‘non-engagement’ with services is attributable to continuing alcohol abuse, then
statutory responsibilities and protection may be seriously undermined.
Overall the case identified gaps in assessment, in professionals’ knowledge of legal
responsibilities and entitlements, in risk assessment, in staff supervision, in
communication and co-ordination, in joint working, in poor recording by agencies, as
well as a lack of strategy in relation to service responses in respect of Alcohol-related
brain damage. The Commission’s recommendations included the need for proper
assessment of individual’s capacity to consent to or co-operate with the proposed care
and treatment; joint Health and Social Work protocols for assessment, care management
and related information sharing in complex cases potentially involving Alcohol-related
brain damage; that Health and Social Work should audit the assessment, care
management and treatment of those who are regularly in contact with services due to
alcohol dependence; and that Drug and Alcohol Action Team Corporate Action Plans
should include specific reference to people with alcohol-related mental disorder.
4.52. Service users may be discouraged from engaging with a service because their wants
and expectations differ from those of service providers. Keene (2001) stresses that many
people with complex needs essentially want help with ‘maintenance’ and sustaining their
current situation, including with ongoing support. Professionals on the other hand tend to
prioritise change in the life of service users. While this may be true long-term for some
service users, service users’ self-expectations may change over time – whether following a
crisis point, or a contact with an individual professional, or particular service, that they can
relate to, develop confidence in, and trust to engage with.
Experience of exclusion from services
Edwards (2003) reported on consultations with Turning Points service users in England,
all of whom had multiple needs, and some of whom had previously been excluded or
disconnected from services. One was a man in his forties with a partner and 2 young
children. He is diagnosed as having schizophrenia but also has a history of alcohol
abuse and, at times, violent behaviour. His partner is also in touch with mental health
services and their children have previously been on the at risk register.
A young woman with a severe learning disability, who had been in touch with a wide
range of service providers, was often labelled as challenging, or as having a behavioural
problem. She gets frustrated and sometimes aggressive which means that services are
sometimes unable to deal with her (Edwards, 2003).
4.53. A typical form of non-engagement identified was that of an older woman living in the
community who was eventually assisted through joint work. She had been affected by
depression, the onset of dementia and malnutrition and could not deal with immediate
dangers, such as a gas leak. She was affected by 2 types of transition – in her health, due to
increasing dementia, and in her accommodation, given a series of moves from home to
hospital, to residential care, then back home to live with a live-in carer. While she did not
accept help initially, gradually she accepted support from her GP, family and other services
(CPN and specialist Dementia Home Care team), so enabling a ‘joined-up assessment’
(George, 2000a).
4.54. A challenging version of ‘non-engagement’ in a case of suspected abuse of an older
person was used to illustrate the need to balance the social work value of self-determination
with risk assessments, external monitoring and involving the police in a timely way (Preston
Shoot, 2002). An older woman had alleged physical abuse and food deprivation and was then
assessed as doubly incontinent, with serious mobility difficulties and as unable to care for
herself. Her GP had requested a housing transfer. Her family said they found her hard to
help as she was unreasonable and demanding. Though social workers attended routinely and
she continued to complain of family members’ behaviour, she refused to go into residential
care, or to have the police involved. Later she was beaten up and almost strangled.
4.55. More generally a key challenge for staff is “the issue of how to engage people who
refuse the support. How do we work with them?”, as was raised in a recent study of
intentionality in homelessness (Rosengard et al, 2006). This will be considered in Chapter
Beyond eligibility
4.56. People with multiple and complex needs, whatever their primary assessed need, may
be ‘defined out’ of the remit of services because they are assessed as being ‘too complex’ or
‘too challenging’ for the service (Keene, 2001; Rankin & Regan, 2004; Bevan, 2003). Such
exclusions occur in statutory and voluntary sector services, including schools, residential
establishments, housing support and other support services. They may impact on people
leaving institutions and homeless people, people with disabilities, young people of school age
services for people with a learning disability, people with addictions of all ages, or young
people or women who have experienced abuse.
4.57. A key block is that residential services may not accommodate people with additional
needs, such as a diagnosed mental health problem. - “the services ‘gate’ may be closed, or
only part open, when people are identified as having complex needs, or a history of difficult
behaviour” (Rosengard Associates with Scottish Health Feedback, 2001). This may be either
because the client group’s needs are narrowly defined, or because staff are under-resourced
and untrained to address specific additional needs or problematic behaviours. Or it may be
that existing resources, such as shared accommodation, are inappropriate due to the assessed
risks for service users or staff, for example where there are histories of violence or sexual
4.58. Management strategies also vary in relation to client non-cooperation or non-
engagement. While some services strive to operate as flexibly as possible, others appear to
operate a more or less rigid, ‘3 strikes and you are out’ policy, and apply this for example,
when people fail to attend appointments or to keep to agreed plans. While in some instances
there may be no option but to exclude the person in question, the net effect of a rigid style
will be to reinforce the inverse care law - those most affected are likely to be those with the
most chaotic lives.
4.59. There is stark exclusion in the case of asylum seekers from mainstream services due
to the current law and their dependence on NASS
service provision while seeking asylum.
Moreover they may be excluded forcibly from school, accommodation and support services,
if their claim is unsuccessful. Here service providers have no choice, regardless of concerns
about destitution or the distress of the individual. As well as the impact on individuals, there
is a reported stress impact on staff (ECRE Conference in Glasgow, May 2006).
4.60. Clearly, exclusive agency policies may be modified over time with changes in the law
or with organisational policies – for example, access to services for asylum seekers has
decreased incrementally since 1999. Others affected by exclusions from services, have been
young people using drugs and current alcohol users in ‘dry’ establishments. It is notable
however that since the development of joint local homelessness strategies and partnership
working with drugs services, homelessness services have gathered confidence in working
with people misusing drugs in Scotland. Additionally there is the ongoing development of a
wider and more responsive range of services for homeless people with serious alcohol
problems (Rosengard et al, 2002; Neale and Kennedy, 2002).
4.61. The following example from Turning Point’s Link Up service shows the importance
of responsive and pro-active work and of services jointly striving and ‘sticking with’ a person
who has been alienated from services and/or is not ready and motivated to engage with the
services on offer.
A history of multiple issues and multiple service use
Dan was in his mid thirties and had a history of polysubstance misuse, mental health
problems, homelessness and sexual abuse. He started sniffing glue at 17, was addicted to
heroin at 18 and began to drink to excess. He was diagnosed with depression and
schizophrenia at 16 and was admitted to hospital on a number of occasions because of mental
health problems. He spent long periods drifting from hostel to hostel and being barred from
most of them.
At 31 he was allocated a place in supported housing, where he lived for 6 years. He was
happy during this time, didn’t misuse substances and took his prescribed medication
regularly. However, when the service changed its policy to permit residents to drink, he felt
this was his downfall. He returned to polysubstance misuse and lost his accommodation. We
shall see that this situation improved later (Turning Point unpublished report).
Influences on exclusion and non-participation
Exclusion and poverty
4.62. Exclusion and low participation in services is shaped significantly by the impact of
poverty, and particularly on neighbourhoods with concentrations of high unemployment/low
income, benefits dependence, poor literacy and low confidence in service use (Pantazis,
Gordon and Levitas, 2006; Mooney and Scott, 2005; The Social Exclusion Unit, 2005 a and
b). Moreover some groups are more at risk of poverty and unemployment, such as children
and young people with intellectual disabilities, with negative consequences for the health and
well being of their families (Emerson, 2004).
NASS is the Home Office’s National Asylum Support Service.
4.63. In the face of a complex and changing welfare benefits system, those who are
multiply disadvantaged and/or who have support and care needs are often greatly dependent
on professionals to obtain and sustain the income support and benefits that enable them to
live positively in the community and the care and support that they need (Hirsh, 2004).
Moreover, fragmentation of services exacerbates problems when people’s needs change, as
when someone is hospitalised or enters a criminal justice establishment this can affect
welfare benefits adversely (e.g. housing benefit) (Rosengard et al, 2002).
4.64. Receiving Direct Payments helps increase flexibility and individual control over
outcomes and improves the quality of disabled people’s lives (Witcher et al, 2000), although
some recipients do not get the support they need to make this work well for them (Morris,
2004). Further, although Direct Payments can be used to buy a variety of support and
services and not only to provide physical help with daily living, they have become
synonymous with personal assistants and physical disability (Bornat, 2006).
Direct payments and mental health issues
An evaluation of a service initiative in Norfolk found that direct payments are described
and designed in a ‘discriminatory’ way, as the language and ideas are most commonly
associated with physical disability (Dawson, 2000). Research in Scotland (Ridley and
Jones, 2002) found a low level of knowledge of direct payments among mental health
service users and several barriers to their implementation including professionals’
attitudes. Another author comments that recipients of direct payments fear that when
their mental health improves their support hours will be decreased even though the level
of support received is enabling them to cope (Morris, 2004). Other research has found
that reductions in support hours have been experienced by some mental health service
users (Davidson and Luckhurst, 2002 quoted by Morris).
Institutional discrimination
4.65. Agency non-recognition of particular needs or inaction in the face of excluding
policies or practices can be systemic. Examples include where people with physical
disabilities confront non-accessible buildings; where people’s communication needs are
unaddressed (people with learning disabilities; people from minority ethnic groups) and
where cultural needs are not addressed sensitively (for example, minority ethnic groups,
gypsy travellers whom the Scottish Executive treats as a distinct minority group)
(Communities Scotland, 2003).
4.66. Generally there was very little focus in the literature on how far people with multiple
and complex needs are involved at a strategic level in service planning and in the
commissioning and management of services, although the literature overall emphasises the
gap between the rhetoric and reality of inclusion for people with additional support needs.
The gist of these discussions is that meaningful participation is variable, with some service
users feeling that their views are not heard or taken into account.
4.67. There are indications that people with multiple and complex needs may be excluded
from partnership and involvement initiatives because services segregate people according to
their impairments and therefore highlight their differences rather than shared experience
(Clare and Cox, 2003; Morris, 2004). Additionally, those with multiple and complex needs
may be seen as difficult or resource intensive to involve. As a result “marginalisation is the
context in which many people with complex needs currently engage with health, housing and
social services” (Clare and Cox, 2003).
4.68. Moreover, where communication difficulties are a constraint, staff may not have the
conviction, the skills required or the ability to access resources to enable or maximise
Children and young people
Professionals may not always take the steps required to hear children’s views, just as
Jenny Morris found for children with multiple needs whom she describes as ‘silent
consumers of health care’ (quoted in Stalker et al, 2003), while Linda Ward (1999)
suggests that ‘the more complex the child’s needs, the greater the gap between policy
and practice may be’ (Ward, quoted by Stalker, 2003).
4.69. Sustained participation requires continuing commitment, resources and support.
White and McCollam state (1999) that “participation and consultation demand a great deal of
effort and energy from service users, which will only be sustained if the exercise is perceived
as useful and fruitful”. They stress that engaging service users in planning will be
undermined if this is “mere window dressing”, with decisions in fact being taken elsewhere;
and that “consultation fatigue may begin to prevail amongst staff and service users”.
4.70. There have been advances in structured user involvement in strategic planning
through the Scottish Executive’s engagement in pro-active consultation with homeless people
and community care service users. This was evident in examples such as the ‘Same as You’
consultation programme, which involved people with learning disabilities, the Millan Review
consultation with mental health service users (Rosengard and Laing, 2001), Communities
Scotland homelessness service inspections (Communities Scotland, 2005) and the
Homelessness Task Force consultations with homeless service users. There were no
indications however of progress in service user involvement in the purchasing and
commissioning of services.
4.71. Here we turn to consider what the literature overall tells us about the outcomes of
service interventions for people with multiple and complex needs. Four key points emerge:
The literature raises questions about how outcomes can meaningfully be defined
and measured, and particularly given the focus on people with changing needs
It offers little systematic evidence of outcomes of the type, for example, that has
been based on monitoring information
Given that most research is short-range and qualitative, or offers ‘snapshot in
time’ quantitative study findings, there is no comprehensive or systematic
information on longer-term outcomes.
Case study histories are frequently used to illustrate patterns over time.
4.72. Regarding the problems of defining outcomes, questions arise such as: Is sustained
outreach contact an output/ process or can it be viewed as an outcome? Is a client’s move on
to housing coupled with support an output or an outcome for people who have had revolving
door histories? Can continued drinking in permanent accommodation be regarded as a
positive outcome for someone with chronic alcohol misuse? Does a young person from care
who has had a troubled history and has rejected support at times, but is continuing to receive
continuing support while staying in an unsuitable Bed and Breakfast establishment, have a
positive outcome?
4.73. Although poor outcomes appeared to be prevalent, some positive outcomes were
clearly identified in the literature. For 3 of the people whose problematic histories were
described earlier, there were positive outcomes, as shown below.
Over time John received help from various services, including hostels, residential care,
counselling and support and medical staff. At the time of the interview he was in
sheltered accommodation, where he had settled well and did computing and other
courses. He was getting married. (Adapted from Routes Out, 2002)
Peter, the young homeless man, was befriended by a man he had met in prison. He
offered to meet him on his release and help him find accommodation. He put him up for
13 weeks and then found him a place in his current hostel. At the time of the interview
he had ‘kicked his drug habit’ and is looking forward to ‘making the best’ of his life.
(Cloke et, al 2002)
When Dan first presented to the Turning Point crisis service he was vulnerable,
distressed and malnourished. He had been in a DSS hotel, but left to live on the streets
because of bullying by other residents. He was admitted and stayed for 4 weeks during
which staff ensured that a care manager was in place.
His physical health improved dramatically and he gained one and a half stones in
weight. His mental health also improved and his confidence grew. He interacted well
with other residents and participated in many activities and trips. He did his daily
chores, often assisting other residents who were ill or tired. In his third week he bought
a guitar and played it in the garden each day. He needed accommodation with support
for his mental health and substance misuse problems and was referred to SAMH’s
Connect service. This found him suitable accommodation after a month. During that
time he relapsed and was readmitted to the crisis service for 12 days detoxification to
stabilise him. Connect then worked with him to find supported accommodation.
4.74. This man’s experience mirrors a dynamic identified by Rankin and Regan (2004) and
other research (Keene, 2001) – that often it is not until people are ready and motivated that
positive engagement occurs. This affirms the need for agencies to ‘stick with’ people over
time. While this may indicate long-term and high support costs, the alternatives of ‘giving
up’ on people is to risk serious crises with associated higher cost outcomes for some.
4.75. It was not feasible in this study to gather agencies’ reports systematically. Had it
done so this may have supplied information about evaluations conducted and more detailed
evidence on monitoring. However, Rankin and Regan (2004) and Keene (2001) both identify
a lack of systematic or sophisticated monitoring or tracking of multiple and complex needs
and of monitoring the effectiveness of services.
The attitudes of staff in a range of services can be experienced as off-putting,
insensitive and unhelpful and this undermines service users confidence and trust
Community care service users and carers are often not familiar with their
entitlements to assessment or with its role in support planning. Moreover, the
multiplication and fragmentation of services leads to fragmented and multiple
assessments, a source of stress to service users
Where services define and apply their client group criteria inflexibly, such as
arbitrary age cut off points, this mitigates against continuity of care
A ‘silo mentality’ constrains the achievement of co-ordinated support and risks
people receiving inappropriate services with poor outcomes. Medical ‘dual
diagnosis’ labels in particular can limit the range of options accessed by people
with multiple and complex needs
Overall, it appeared that the presence of multiple, interconnected needs, rather
than the severity of needs, creates the greatest challenges for services created to
meet single service user needs
Often there appeared to be inadequate assessment, support planning and
resources for people affected by transitions. This delayed people gaining access
to the services that they needed, or limited their rights
When service users and carers disagree with professionals’ assessments, the
options selected appear to be constrained by resources or limited vision
People from minority ethnic communities, refugees and asylum seekers did not
consistently receive sensitive assessment or access to interpreters and translators
People with multiple needs may be ‘defined out’ of the remit of services for
organisational reasons, because they are assessed as being ‘too complex’ or ‘too
challenging’ for the service
Non-engagement with services occurred because of dispositional,
organisational, situational and structural factors. These included: lack of trust
and confidence, services’ cultural insensitivities; services’ systems or cultures
being compatible with life-styles; poverty impacts, and people not being ready
to address problems. Outcomes may be exclusion and rough sleeping
exacerbated by poor health, injuries, or institutionalisation
Exclusion reflected the interplay of poverty and related disadvantage and
additional support needs. Refugees experience significant exclusion and require
highly sensitive, targeted services
There is a gap between the rhetoric and the reality associated with participation
in services.
4.76. The following summary table identifies what the literature tells us, first about the key
processes and influencing factors on service users’ experiences in relation to moving on
within and through services (column 2). It then summarises elements of good practice
required to enable positive experiences and outcomes (column 3).
Table 4.1. Influences on experiencing services and good practice implications
Pathways stage Processes/influencing factors Service requirements
Getting through
Motivation and readiness
influence engagement and process
Assessment and access criteria
influence support outcomes
Professional divides and
approaches meet needs variably
Users may lack clarity re service
roles and systems
Extent to which services address
individual & cultural needs and
circumstances sensitively affects
Structural factors may limit
Management policies may limit
engagement or result in evictions
and exclusions
Joint work & information sharing
may be poor and result in poor
Monitoring and review of
progress is important
Funding streams and stability are
critical to continuity
Joint assessment systems
Holistic, participative support
planning & review
Cultural sensitivity
Quality communication
Positive, collaborative care
User involvement/
engagement opportunities
Preventing homelessness/
Active outreach
Known user satisfaction and
Establishing creative options
with service users
Well networked services
Joint work, partnerships,
Creativity and flexibility
Collaboration in monitoring
and review
Getting on
Motivation, readiness, preferences
Resettlement approaches may be
restricted by service
fragmentation; approaches
orientation and practice
Access to appropriate, sufficient
follow on resources is uneven
Income/ sustainability is critical
Sophisticated monitoring and
review is needed to monitor
Creative options established
with service users
Onward referral system based
on knowledge of relevant
User purchasing systems
enable user choice; increase
Joint work, networking and
protocols e.g. information
Joint planning to meet
identified gaps
5.1. The report so far has focused on how people with multiple and complex needs access,
experience and move on within and from services. This overview has generated an emphasis
on deficits and gaps in services, rather than on existing and potential good practice. This
chapter aims to summarise these gaps and deficits and the associated problems that the
literature has identified in regard to joint working, and to clarify related influences and
implications. Before moving on to focus specifically on good practice in Chapter Six, this
chapter will conclude by considering what the literature tells us about what service users
5.2. Overall, the problems and their recognition are not new; nor are they specific to
Scotland or the UK. What emerged from the literature however is that there is a renewed
attempt to clarify and tackle the systems and other influences that undermine positive
5.3. Reinforcing the findings to date, Rankin and Regan (2004) identify 4 key gaps in
services for people with multiple and complex needs:
Services fail to recognise the inter-connected needs of individuals and how their
needs relate to the influences of poverty and social exclusion
Services are fragmented and even those that strive to be holistic are often
organised around single needs or issues
Planning to meet needs often does not address housing and employment issues
Area based initiatives to tackle social exclusion are often disconnected from
social care policy.
5.4. And showing that similar deficits are found beyond the UK, the Human Service
Department, Australia (2003a) identified:
Ineffective service responses, including lack of or poor collaboration and
communication among services and staff
Difficulties in locating suitable accommodation
Absence of a case manager or difficulties with their case manager was a key
No appropriate day services
Services are fragmented
“Funding criteria do not allow for services to extend beyond the brief”.
5.5. Below we discuss a number of key themes in relation to the gaps identified in this