Delivering Personal Health Budgets: A Guide to Policy and Practice

176 Pages·2014·0.54 MB·English

by  Vidhya Alakeson

A GUIDE TO POLICY AND PRACTICE
VIDHYA ALAKESON
Delivering personal
health buDgets
A guide to policy and practice
Vidhya Alakeson
First published in Great Britain in 2014 by

Policy Press North American ofce:
University of Bristol Policy Press
6th Floor c/o The University of Chicago Press
Howard House 1427 East 60th Street
Queen’s Avenue Chicago, IL 60637, USA
Clifton t: [phone]
Bristol BS8 1SD f: [phone]
UK e:
Contents
List of tables and fgures iv
Acknowledgements v
Prologue: Stephen’s story 1
Introduction 5
section 1: introducing personal health budgets
one Personalisation across public services 13
two What is a personal health budget? The basics explained 21
three The development of personalisation: from direct payments 31
to personal health budgets
four Managing long-term conditions: the case for personal health 45
budgets
fve How well do personal health budgets work? 57
section 2: implementing personal health budgets
six The personal health budget process 73
seven How to set a personal health budget 81
eight Getting the most out of care planning 91
nine Managing and monitoring the money 101
section 3: personal health budgets and organisational
change in the nhs
ten Navigating the new landscape: personal health budgets 113
and NHS reform
eleven Doctor does not know best: a changing role for clinical 123
professionals
twelve Growing the market: bringing new providers into the NHS 135
Conclusion 143
Epilogue: Jonathan’s story 147
References 149
Index 163
iii
Delivering personal health budgets
list of tables and fgures
tables
2.1 Use of personal health budgets at nine months 25
4.1 Shared decision-making initiatives in the NHS 50
5.1 A hierarchy of evidence 57
5.2 International initiatives in self-directed care 60
5.3 Purchases made by participants in the Florida Self-directed 63
Care program in the Fort Myers area in the frst six months
of the fscal year 2009–10
7.1 NHS Oxfordshire’s resource allocation system for CHC 86
9.1 Selected outcomes and purchases from the 108
Northamptonshire PHB pilot for mental health, February
2012
Figures
3.1 The conceptual history of personal health budgets 38
4.1 The proportion of people with long-term conditions by age 45
in England
4.2 Percentage of primary care physicians saying they routinely 47
give chronically ill patients written instructions on managing
care at home
4.3 The relationship between shared decision-making initiatives 52
6.1 An example of the personal health budget process for CHC 74
10.1 The new structures of the NHS 114
iv
acknowledgements
I would like to thank all those whose stories and experiences of having
a personal health budget have illuminated this book. Yours is the most
powerful evidence that this approach works. I would also like to thank
all the pilot sites with whom I have had the opportunity to work and
from whom I have learnt about the challenges of implementing even
the best idea.
I am hugely grateful to so many individuals with whom I have
worked on personal health budgets and self-direction over the last seven
years and from whom I have learnt so much, including: Alison Austin,
Carey Bamber, Rita Brewis, Pamela Doty, Dick Dougherty, Simon
Dufy, Jo Fitzgerald, Jon Glasby, Kevin Lewis, Kevin Mahoney, Tricia
Nicoll, Rachel Perkins, Zoe Porter, Martin Routledge, Gill Ruecroft,
Gill Stewart, Julie Stansfeld, Shawn Terrell and Pam Werner. You span
both sides of the Atlantic but are joined by a belief in the expertise of
individuals to improve their own lives, given half a chance. Some of
you commented on drafts of the book for which a special thank you,
and to Rob, thank you for making pictures of my words. I am also
very grateful to Ali Shaw at Policy Press for guiding this book from
idea to reality.
v
Introduction
prologue
Stephen’s story
In 2008, Stephen had an accident and sustained a spinal injury which
left him tetraplegic and completely paralysed from the shoulders down.
After three months in intensive care and a further eight months at
a rehabilitation unit in Sheffield, Stephen returned home in August
2009. The period following Stephen’s return home was his darkest.
In rehab, the entire focus was on what Stephen could do and his
partner, Nicola, was trained in the specialist care he needed. Stephen
and Nicola were supported to learn what was necessary to be able
to live a full and active life in the future. Everything changed when
they returned home.
They chose a larger care agency because they were assured it would
be better able to cope with Stephen’s needs, but according to Nicola,
it was ‘hell on earth’. There were early warning signs that things would
not work out. Instead of covering all his needs, Stephen’s care plan
only focused on the physical side and did not say anything about
Stephen as a father, partner or other parts of his life. Before Stephen’s
accident he renovated houses and was a part-time househusband, but
there was no mention of the support he might need to continue his
interests or simple fatherly tasks such as school runs, mealtimes, bath
times and bedtimes. Agency staff were instructed not to do menial
tasks considered social care such as emptying bins or changing a
light bulb, even though their role was to support Stephen to be an
active family member.
Stephen was getting more and more depressed, and Nicola was
getting more stressed because she was also working full time.
Stephen felt that they were not getting value for money. The agency’s
recruitment process was not personalised; there was nothing about
Stephen in the process with which staff could connect. The agency
would often send carers who couldn’t drive, which meant that Stephen
couldn’t get out and about. In his first autumn and winter at home,
Stephen did not leave the lounge for up to three weeks at a time. He
rarely asked for care or support because he didn’t relate to the care
team and didn’t want them in his house. While the agency ticked
every box as far as the Care Quality Commission was concerned,
no one ever asked Stephen’s opinion about his care. No one took
him seriously as a customer, and purely from a health point of view,
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Delivering personal health budgets
Stephen had three chest infections in his first three months at home
because he wasn’t getting the passive exercises he needed and was
stuck in the lounge not getting any fresh air.
Fortunately, Stephen had a review after three months when it became
clear that he could become part of the Nottinghamshire Primary Care
Trust personal health budget pilot. Stephen’s personal health budget
was a year in the planning. The focus of his plan was to find a purpose
and a meaning in his new life and to ensure that Stephen could be
actively involved with his children again. The children had found the
accident very hard and had stopped spending time in the house. It
was important to Stephen and Nicola to create a situation that was
comfortable for them.
With his personal health budget, Stephen has hired his own team
of dedicated carers. He doesn’t look to employ people who have care
experience. He prefers to train staff to accommodate his own specific
needs and looks for people who respect the fact that he is in control
and who are willing to listen and take direction. Stephen decides who
works, and when, based on his plans for the week. The carers also
feel part of a team and can help each other by covering holidays.
Stephen provides comprehensive professional training for all his
team, but this is only completed when Stephen is comfortable with
their level of competence. The agency would often send untrained
carers who did not have the skills and confidence to meet Stephen’s
needs. For example, he cannot cough and needs to be assisted to
cough. On one occasion, the agency sent a young woman with only
six months’ experience of generalist care who did not know Stephen
well enough to care for him alone overnight. At the same time, when
Stephen’s care coordinator realised that the family was going out for
lunch without a carer, she considered it a safeguarding issue that
put Stephen at risk, despite the fact Nicola is fully trained and more
knowledgeable about Stephen’s care than anyone else.
Nicola feels that they would not have been able to manage a
personal health budget when Stephen first came home. She feels
that it helps to have a care package in place for the first six to eight
months and that you can use that time to put your own personalised
package in place. She says running a personal health budget for
a large package is a lot of work; you have to go into it with your
eyes wide open. However, there are real advantages. Although the
amount of money available for Stephen’s care is the same as before,
Stephen is able to convert this into more variable and flexible hours
of support than he could with an agency. This has enabled him to
hire two gardeners and to get back outside. He can direct them and
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Prologue: StepInhterno’sd sutcotriyon
it gives him something he can do with his youngest daughter. This
means that Stephen can be a dad without Nicola always having to be
around because he needs two-to-one support when he is in charge
of his very young daughter.
Stephen has also used his personal health budget to buy an
iPad and a bracket for his wheelchair so he can browse easily. This
allows him to use the internet and shop and, most importantly, to
read a bedtime story to his daughter. He has also bought an iMac
with voice-activated software. The iMac is fast enough for the voice
activation to work quickly and smoothly and this means that Stephen
can do simple things like reading a newspaper with relative ease. He
has also bought a specialist hoist, which allows him to be hoisted
into his classic convertible car, which he is now able to enjoy once
again. Finally, Stephen has used some of his personal health budget
to buy a powered 4x4 wheelchair that enables him to have a more
active outdoor lifestyle than his original wheelchair allowed. In the
new wheelchair, he can be on the beach with his young daughter or
go across muddy footpaths on country walks.
Stephen and Nicola are so passionate about self-directed support
for people with long-term health conditions and disabilities that
they are using their lived experience of personal health budgets and
Nicola’s extensive experience in recruitment and human resources to
run their own personal health budget agency, Solo Support Services.
They offer a ‘third party’ arrangement for people who don’t want or
are not able to have a direct payment.
Source: Stephen’s story is based on the author’s interview with Nicola
Darby, December 2012, and reviewed by Stephen in February 2013.
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