Debating personal health budgets

Abstract

Personal health budgets (PHBs) were piloted in the National Health Service (NHS) in England between 2009 and 2012 and were found to have greater positive effects on quality of life and psychological well-being for those with mental health problems than commissioned service, as well as reducing their use of unplanned care. The government intends to extend PHBs in England for long-term conditions, including mental health, from April 2015. Given the importance of engaging clinicians in the next phase of PHB development, we provide an overview of the approach, synthesise the evidence from the national pilot and debate some of the opportunities and challenges. Balancing individual choice and recovery with concerns for risk, equity and the sustainability of existing community services is the central tension underpinning this innovation in mental health service delivery.

Full text

Direct payments and personal budgets in social care have been
introduced as part of a move towards the personalisation of
care, whereby a person is able to choose the services best placed
to meet their unique needs. Their equivalent in healthcare,
personal health budgets (PHBs; www.personalhealthbudgets.
england.nhs.uk), are not yet widely available, but has been
subject to pilot testing in England and, since October 2014,
all individuals who are eligible for continuing healthcare
have the right to have a PHB.
1
Around 56 000 people are
eligible for continuing healthcare. These people have the
highest level of ongoing health and support needs and the
National Health Service (NHS) pays for their health and
social care. Adults with mental health conditions are not
often eligible for continuing health care because they often
do not have high nursing care-type needs, but older adults
with dementia are more likely to qualify as are some people
with intellectual disabilities. The roll-out of PHBs for other
groups, such as those with mental health problems, is
currently at the discretion of local decision makers, although
NHS England expects clinical commissioning groups to lead a
major expansion of PHBs in 2015
-
2016. The policy and plans
for PHBs are limited to the NHS in England.
Many clinicians may be unaware of the developments
in PHBs
2
and only a few psychiatrists were involved in the
national pilot which suggested that PHBs may be of value to
people with mental health conditions. The purpose of this
paper is to introduce the concept of PHBs and to highlight
some of the opportunities and challenges that the use of
PHBs presents. Our intention is to extend the debate on the
use of PHBs and their value in mental health services.
What is a personal health budget?
A personal health budget is an individual allocation of NHS
resources that can be used to meet identified health and
well-being needs in possibly new and innovative ways
outside of traditionally commissioned services. The national
evaluation identifies a wide range of purchases made with a
PHB, from traditional clinical services such as therapies and
nursing care, to social care-related services such as meal
preparation and social activities, to well-being services such
as gym memberships, computers and art classes.
A PHB is not intended to cover all aspects of NHS care:
in-patient care, emergency services, general practitioner
(GP) services and pharmaceuticals are all excluded, and
certain goods and services are prohibited. PHBs are focused
on meeting ongoing needs where bringing together the lived
experience of individuals and the learned expertise of
clinical professionals can improve the quality and outcomes
of care. In this respect, they have much in common with
other approaches to personalising the management of
CURRENT PRACTICE
Debating personal health budgets
Vidhya Alakeson,
1
Jed Boardman,
2
Billy Boland,
3
Helen Crimlisk,
4
Charlotte Harrison,
5
Steve Iliffe,
6
Masood Khan,
7
Rory O’Shea,
8
Janet Patterson
9
BJPsych Bulletin (2016), 40,34
-
37, doi: 10.1192/pb.bp.114.048827
1
NHS England;
2
Institute of Psychiatry,
King’s College London;
3
Hertfordshire
Partnership University NHS Foundation
Trust;
4
Sheffield Health and Social
Care Foundation Trust;
5
South West
London and St George’s Mental Health
NHS Trust;
6
University College London;
7
Royal College of Psychiatrists;
8
Northumberland, Tyne and Wear
NHS Trust;
9
Oxford Health NHS
Foundation Trust
Correspondence to Jed Boardman
(jed.boardman@slam.nhs.uk)
First received 15 Jul 2014, final revision
7 Oct 2014, accepted 12 Nov 2014
B 2016 The Authors. This is an open-
access article published by the Royal
College of Psychiatrists and distributed
under the terms of the Creative
Commons Attribution License (http://
creativecommons.org/licenses/by/
4.0), which permits unrestricted use,
distribution, and reproduction in any
medium, provided the original work is
properly cited.
Summary Personal health budgets (PHBs) were piloted in the National Health
Service (NHS) in England between 2009 and 2012 and were found to have greater
positive effects on quality of life and psychological well-being for those with mental
health problems than commissioned service, as well as reducing their use of
unplanned care. The government intends to extend PHBs in England for long-term
conditions, including mental health, from April 2015. Given the importance of
engaging clinicians in the next phase of PHB development, we provide an overview of
the approach, synthesise the evidence from the national pilot and debate some of the
opportunities and challenges. Balancing individual choice and recovery with concerns
for risk, equity and the sustainability of existing community services is the central
tension underpinning this innovation in mental health service delivery.
Declaration of interest V.A. has worked as an independent consultant for the
Department of Health, England and is mental health lead for the Personal Health
Budgets Delivery Programme, NHS England.
34

long-term conditions such as the house of care model
3
and
shared decision-making.
At the centre of a PHB is a care plan which is developed
by the individual in conjunction with their clinical team and
signed off by the NHS from a clinical and financial
standpoint. Individuals can choose to manage their PHBs
in different ways depending on the level of financial
responsibility they wish to take.
The evidence supporting the roll out of personal
health budgets
There is some evidence for the impact of personal budgets
on people with mental health problems in social care, but
this is limited. A recent systematic review of 15 studies in
this area found mainly positive outcomes.
4
However, owing
to methodological limitations, the findings were judged to
be insufficiently robust and not adequate to inform policy
and practice.
There is some evidence for the value of PHBs. The
national personal health budget evaluation was based on an
independent, 3-year longitudinal trial conducted by the
Personal Social Services Research Unit (PSSRU), involving a
total of just over 2000 people across treatment and control
groups and a mixed-methods design with randomisation in
some, but not all, local areas.
5
Outcomes for the PHB and
control groups were compared at a target 12th month after
initial recruitment. The total sample size was adequate and
provided sufficient statistical power. The subgroup analyses
for individual health conditions had lower numbers and
consequently less power. Participants had a range of health
conditions, with 412 experiencing mental health problems.
The ‘mental health conditions’ group was not homogeneous
and contained a broad range of conditions and severities.
The average annual PHB for mental health was £3602.
Overall, the evaluation found that individuals with a
personal health budget reported higher levels of care-
related quality of life and psychological well-being than
those receiving care as usual. PHBs were cost-effective for
people with mental health problems and those receiving
NHS continuing healthcare, but cost analyses for those with
other health conditions were inconclusive owing to small
subsample sizes. Those with mental health conditions had
lower indirect costs as a result of using fewer in-patient,
emergency and GP services. Consequently, personal health
budgets were found to provide greater net benefits than
conventional services for those with mental health
problems. Overall costs for the PHB group showed a 12%
decrease at follow-up compared with the 8% increase in
costs seen in the control group. Importantly, the way in
which PHBs were implemented was found to have an effect
on individual outcomes. Offering PHBs so that individuals
were able to choose how their budget was spent and
managed had a positive impact on outcomes. One restrictive
model of implementation used for 18% of the overall PHB
sample resulted in less positive impacts for PHB holders
than for the control group.
5
Other studies, including evidence from similar
programmes in the USA, also report positive outcomes for
individuals, but these are descriptive or pre/post studies.
6
Debating personal health budgets
Opinion on PHBs is divided: there are opportunities, but
also potential risks. The rest of this article presents five such
aspects. In each case, we set out the opportunities and risks
and discuss how risks can be managed. Case studies are used
to illustrate each point of debate.
Personal health budgets and the role of evidence-based
medicine
PHBs can be spent in ways that do not conform to
the current understanding of evidence-based medicine.
Individuals are not restricted to treatments that are
approved by the National Institute for Health and Care
Excellence (NICE). The flexibility of a personal health
budget presents a clear opportunity for the NHS to respond
to each individual’s needs rather than expecting individuals
to fit into commissioned services. It is these additional
inputs and supports that are often crucial in determining a
person’s recovery (Box 1). This can be particularly valuable
for patients for whom current therapeutic options have not
proved successful and who may otherwise disengage from
services. Furthermore, literature on the self-management of
long-term conditions highlights the importance of indivi-
dual engagement which PHBs can facilitate.
7
However, there is also a risk that by not following NICE
guidelines, resources are poorly spent and care is either not
effective or, at worst, harmful. Important questions remain
about how clinicians weigh up the pros and cons of
alternative purchases such as a holiday in place of respite
and evaluate whether such choices genuinely meet needs.
Working with PHBs may necessitate different clinical skills
from those required by evidence-based medicine and these
new conversations could reshape the doctor/patient
relationship.
Balancing individual choice and risk
Supporting individuals to exercise choice using a PHB can
be an effective means of increasing their sense of personal
CURRENT PRACTICE
Alakeson
et al
Debating personal health budgets
Box 1 Case study 1: Personal health budget used for
additional supports
Alex suffered a stroke which left him with a mild physical and
cognitive disability and very anxious and depressed. He had
become very fearful of bad news arriving in the post and
therefore tended to leave letters unopened and bills unpaid. He
used his personal health budget to hire a personal assistant to
help him manage his post and other administrative issues and to
monitor his medications and diet. He also made several one-off
purchases. He bought a satellite navigation device to help him
drive without getting lost because the stroke had affected his
short-term memory. This enabled him to be an active part of
local stroke groups and to drive others to meetings, giving him a
renewed sense of purpose. He bought a tablet computer to
rebuild his confidence and IT skills. Finally, he bought a drum kit
as an alternative to physiotherapy and one that he finds a lot
more fun. He attends weekly drum lessons rather than regular
physiotherapy. Since getting a PHB he has reduced his use of the
community mental health team to three times a year.
35

control and opportunities. Furthermore, engaging individuals
closely in the development of their care plan can help
facilitate their management of risk and safety. Planning PHBs
involves working in partnership with individuals to identify
risks and how they can be managed safely to achieve the
outcomes desired by patients. All PHB plans have to be
approved by a clinician and plans should only be signed off
if they fully address risk and identify contingencies.
At the same time, by making different choices from
those clinicians would make on their behalf, PHBs can allow
individuals to make choices that would increase rather than
mitigate their symptoms or put them at greater risk (Box 2).
For example, individuals may choose to use complementary
therapies that are unproven rather than traditional talking
therapies or untrained personal assistants rather than
regulated providers. Approving alternative choices can be
perceived to be in conflict with the duties of a doctor as set
out by the General Medical Council given the lack of
established evidence or quality assurance procedures for
many alternatives to clinical care.
The opportunity for greater prevention
or the risk of falling back on the NHS
Through the development of person-centred plans, PHBs
provide an opportunity for individuals to better manage their
ongoing heath and avoid unplanned use of in-patient and
crisis care. This is supported by the national evaluation which
found that PHB holders made less use of other NHS services,
including in-patient care, than those not using PHBs. The
difference in service use amounted to, on average, £3050 a
year for those with mental health problems.
5
However, for those individuals whose choices turn out
to have limited effectiveness in their mental health
management, there is a risk that they may exhaust their
PHB without having their needs met. This could leave them
either without the care they need or cost the NHS more
overall because they fall back on existing services.
In terms of access to needed care, PHBs do not differ
from the NHS as a whole. Individuals who are unsuccessful
in treatment, be that traditional or through a PHB, are not
denied care. To ensure that the choices individuals make are
more likely to be effective, clinicians should be closely
involved in the development of PHB plans, adding their
clinical expertise to the lived experience of individuals
(Box 3).
Balancing individual choice, equity and efficiency
PHBs are based on a transparent allocation of resources at
the individual level that seeks to protect equity within the
NHS while allowing individuals greater choice. The
approach underpinning PHBs is to maximise outcomes for
each individual rather than ensuring that each person
receives the same service. Encouragingly, the national
evaluation found no differences in the impact of PHBs by
gender, ethnicity or income.
The concerns for people who lack capacity are the same
for PHBs as for other decisions made for this group
-
how to
make sure that choices are being made in someone’s best
interests. Family members may effectively act as representa-
tives for individuals who lack capacity or support those with
capacity to access a PHB. Those with fluctuating capacity may
be encouraged to plan for the future when they are well. Third
parties may hold the budget where there are concerns about
financial exploitation by family members. As commissioners
and clinicians have to approve plans, a plan which is not in the
best interests of the patient would not be approved.
There is a risk that PHBs create long-term dependency
and a sense of entitlement to support rather than the value
of the PHB being reduced as an individual recovers.
Furthermore, the expansion of PHBs will have a knock-on
effect on the wider service system. If enough individuals use
their PHB to make different choices, it may be difficult to
maintain a service such as a community mental health team
for those who want to continue to use it. This is of particular
concern because PHBs are to be implemented from within
existing funding and services are already struggling with
current levels of resources. There is a risk that those who
lose out will be the most vulnerable, whereas those who are
better able to choose go elsewhere.
CURRENT PRACTICE
Alakeson
et al
Debating personal health budgets
Box 2 Case study 2: Croydon’s personal health budget
pilot for substance misuse treatment and recovery
In the evaluation of the Croydon pilot, the lead health
professional described how conflict between the choice and
wants of service users and the professional opinion of staff
played out in one particular case:
‘We did have one client who, when he looked at the cost of
what he was recommended for, in-patient detoxification, was
surprised at how much it cost. His instinct was immediately to
minimise the amount of money that was spent on his medical
intervention because he wanted to spend more money on other
aspects of his recovery. That led us into a difficult situation and
he did relapse and ended up needing another detox, but again
only wanted another short detox. So we had that issue about
‘‘it’s my budget, it’s my money’’.’
In the end, the PHB for the individual was stopped.
8p.38
Box 3 Case study 3: Using a personal health budget
to fund psychotherapy
Mary was eligible for a PHB as part of her trust’s community
mental health pilot. She has depression, anxiety and a
personality disorder and has been using mental health services
for 10 years. In the year prior to the pilot, she had 18 overnight
in-patient stays, three respite stays and 49 contacts with
professionals from the community mental health team.
The main thing that Mary wanted to do differently with her PHB
was to access long-term psychotherapy as and when she felt she
needed it rather than in a 12-week block. A short course of NHS
psychotherapy in the past had started to work for her so she
negotiated to reduce the input from her care coordinator and
psychiatrist and used her PHB to support further engagement in
private psychotherapy.
After a year of having a PHB, Mary had only taken one overdose,
had reduced her medications, was seeing her care coordinator
less often and had started to reconnect with her children and
grandchildren.
36

Freeing up psychiatrists to focus on clinical
care or increasing bureaucracy and workload
The experience of many clinicians working with personal
budgets in social care is that they have increased bureaucracy
and have made it more difficult to access services for
individuals. In part, this is because personal budgets have
been implemented at the same time as significant cuts to
social care funding and in social care they are still subject to
means testing. Critics of PHBs argue that they pose similar
risks to the NHS, leading to overly complex processes,
bureaucracy and additional costs.
9
Personalisation does not necessitate greater bureaucracy
or work for psychiatrists. Non-clinical staff can support
individuals to develop a care plan, seeking input from
psychiatrists rather than psychiatrists taking a lead. In fact,
experience has shown that non-clinical brokers can be
better placed to support individuals to think differently
(Box 4).
10
However, to limit bureaucracy, two things matter. First,
there needs to be adequate investment in the infrastructure
for PHBs, particularly the necessary support for care
planning and avoidance of exploitation. The national
evaluation estimated this to be on average £146 000 per
clinical commissioning group in the first 2 years, with costs
reducing over time.
11
Second, it is essential to establish clear
local guidelines, which can reduce the occurrence of
arbitrary decision-making. Decisions should be made with
the individual’s needs in mind, but the lack of established
guidelines can allow prejudicial decisions to creep in.
Conclusions
Personal health budgets present an opportunity to improve
outcomes for those with long-term mental health conditions.
When well implemented to offer choice and flexibility, they
offer one potentially effective tool for facilitating people’s
personal recovery, offering the chance of better outcomes
for individuals at lower overall cost to the NHS. However,
they are not without their risks and challenges, particularly
to the long-term sustainability of existing community-based
services. Greater clarity from government about the nature
and timetable for the roll-out of PHBs in mental health will
be essential. Full engagement with psychiatrists will be
critical to the success of PHBs but the profession has so far
not been significantly involved in shaping the policy or its
implementation. We invite you to continue the debate.
Acknowledgements
This paper was developed in collaboration with the Policy Unit and the
Personal Health Budgets Advisory Group of the Royal College of
Psychiatrists.
About the authors
Vidhya Alakeson MSc is mental health lead, Personal Health Budgets
Delivery Programme, NHS England; Jed Boardman PhD FRCPsych,
consultant/senior lecturer in social psychiatry, South London and Maudsley
NHS Foundation Trust, and Health Services and Population Research
Department, Institute of Psychiatry; Billy Boland MRCPsych, Consultant
Psychiatrist, Hertfordshire Partnership University NHS Foundation Trust;
Helen Crimlisk MRCPsych, Consultant Psychiatrist, Sheffield Health and
Social Care Foundation Trust; Charlotte Harrison MRCPsych, Consultant
Psychiatrist, South West London and St George’s Mental Health NHS Trust;
Steve Iliffe FRCGP, Professor of Primary Care for Older People, Department
of Primary Care and Population Health, University College London; Masood
Khan BSc, Policy Analyst, Royal College of Psychiatrists; Rory O’Shea
MRCPsych, Consultant in Old Age Psychiatry, Northumberland, Tyne and
Wear NHS Trust; Janet Patterson MRCPsych, Consultant Psychiatrist,
Oxford Health NHS Foundation Trust.
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CURRENT PRACTICE
Alakeson
et al
Debating personal health budgets
Box 4 Case study 4: Using a social care budget for
external support
Paul is a man in his 30s with obsessive
-
compulsive disorder and
Asperger syndrome. He had found it very difficult to be socially
active, but with the support of community mental health team
psychiatry, psychology and occupational therapy he began to
access groups for people with Asperger syndrome. Although he
became more engaged in the community, it created challenges
for him as he encountered difficult feelings that he interpreted
as mental health crises and began using mental health services
more frequently. He used a social care budget to hire a support
worker from the National Autistic Society who helped him
discuss, understand and manage these feelings as they arose.
His use of mental health services has subsequently reduced and
he also feels happier.
37