My talk on how best to deliver choice in English dementia strategy - through the market, e.g. personal budgets, or international law, e.g. human rights.

1. Delivering choice in the
English dementia strategy:
human rights or budgets?
Dr Shibley Rahman
Public talk given at
BPP Law School on 23 July 2015

2. Introduction

6. Personal budgets

7. Personalisation
• “Personalisation” has been a major aim
of English social care policy for over a
decade and has enjoyed broad support
from all political parties.
• It, in England, refers to policies aimed at
making public service provision more
tailored to individual service users, rather
than “a one-size fits all” approach.

8. Main aims of personal budgets Melanie Henwood
and Bob Hudson Journal of Integrated Care
Volume 16(3) June 2008
• Choice
• Control
• Flexibility
(also include promotion of wellbeing and
independence)
Uptake of personal budgets:
“notoriously slow”

9. Personal Budgets and Health: a review of the
evidence (Gadsby, February 2013)
There are a number of drivers behind the desire to ‘personalise’ health care in
England:
• it is expected that personalisation is a route towards better integration of
health and social care services, through its focus on the whole person;
• personalisation might help to improve people’s management of long
term conditions through a strategic shift towards early intervention and
prevention;
• personalisation will encourage the provision of services that will allow
people to be maintained at home;
• personalisation will improve patient experience and outcomes through
promoting choice, control and flexibility.

15. European Journal of Integrative Medicine 5 (2013)
191–193 Editorial
• Honey is frequently used as a traditional
remedy and is thought to benefit health in
various cultures.
• A systematic review by Charalambous et al.
(2013) explored the effectiveness of honey to
facilitate healing of radiotherapy induced oral
mucositis in head and neck cancer patients.
• A second study on honey, a randomised
controlled trial (Heidari et al., 2013),
investigated whether it could improve healing
and scarring after caesarean section,

16. Journal of Health Services Research & Policy
18(Suppl. 2) 1–10 Nicholas Mays (2013)

17. The cost of implementing personal budgets –
Jones et al. 2009 PSSRU
• costs associated with the project management
structure
• designing systems (e.g. design of assessment and
budget-setting)
• workforce training
• developing and supporting planning/brokerage
• managing the market
• ongoing costs and anticipated cost reductions as a
result of implementing personal health budgets
• potential displacement of other activities as a
result of the introduction of personal health
budgets

18. Rogers J, Personal health budgets: A new way of accessing complementary
therapies? Complementary Therapies in Clinical Practice (2010)
• The drive towards evidence based health care has been very strong and
growing since the 1980s.
• Many commentators implicitly or explicitly refer to specific types of
evidence, and typically refer to the “scientific hierarchy”.
• Many complementary therapies are not supported by a strong evidence
base in these terms.
• However, the same therapies often enjoy significant popular usage an many
service users believe strongly that such therapies are beneficial.
• If public policy is to driven by issues of choice and user control, should
evidence be a secondary consideration?

19. Personal Budgets and Health: a review of the
evidence (Gadsby, February 2013)
• Personalisation is defined by central
government as “the process by which services
are tailored to the needs and preferences of
citizens.
• The overall vision is that the state should
empower citizens to shape their own lives and
the services they receive” (Cabinet Office
• 2007 p33).

20. The “resource allocation system”
(Norrie et al., 2014)
• The RAS system in particular has been
criticised as “an under-funded voucher
system” (Beresford, 2011).
• Beresford et al. (2011a) argue that the
implementation of personal budgets is
experienced by users and staff as being
overwhelmed by methods and systems
which are tied into the structures and
processes associated with traditional
policy and provision.

21. Slasberg, Beresford and Schofield: Research,
Policy and Planning (2014/15) 31(1), 43-53

22. Slasberg, Beresford and Schofield: Research,
Policy and Planning (2014/15) 31(1), 43-53
• “The Government’s Guidance to the Care Act
2014 confirms its view:
“The allocation of a clear up-front indicative (or
‘ballpark’) allocation at the start of the planning
process will help people to develop the plan and
make appropriate choices over how their needs are
met (Department of Health, 2014, p.188).””
• “However, the Care Act itself defines a personal
budget in a quite different way, making no
reference to an up-front allocation. “

24. Slasberg, Beresford and Schofield: Research,
Policy and Planning (2014/15) 31(1), 43-53
• Guidance to Care Act (2014) asserts:
“Independent research shows that where
implemented well, personal budgets can improve
outcomes and deliver better value for money.”
(p.151)
BUT…

25. Slasberg, Beresford and Schofield: Research,
Policy and Planning (2014/15) 31(1), 43-53
• The national evaluation of the individual
budget pilots (Glendinning et al., 2008).
• Improving Value for Money in Adult Social
Care (Audit Commission, 2011).
• The Financial Management of Personal
Budgets (Audit Commission, 2010)
• Users of Social Care Personal Budgets (Ipsos
MORI, 2011).•

27. “It was concluded that service uses and
managers are working in a climate of dynamic
and complex organisational change, of which
user involvement is an integral part, and that this
has impacted on the nature of service user
involvement as a new social movement.
Managers need to attend to this in their
interactions with service users and their
organisations.”

28. Major drivers for integration in policy
(Humphries, 2015)
• Ageing population
- “Often this requires long term support closer to
home rather than single episodes of care in acute
hos-pitals. “

29. Major drivers for integration in policy
(Humphries, 2015)
• Fragmentation
- “The major reforms introduced by the Health
and Social Care Act 2012 means that different
parts of the NHS and care system – primary
care, social care, acute hospitals, mental health
and community health services – are
commissioned and funded separately and
subject to different governance, accountability
and regulatory regimes.”

30. Major drivers for integration in policy
(Humphries, 2015)
• History
- “Finally there is the longstanding distinction
between NHS care that is mostly free at the
point of use and funded through general
taxation and publicly funded social care which
is subject to a financial assessment – a ‘means
test’. ”

31. Iliffe S, Manthorpe J. Barker & Burstow's care
packages for England. BMJ.
• “The market in social care has failed.”
• “The Barker report depicts relations between
health and social care as opaque, inefficient,
inequitable, and weighted towards individual
rather than collective responsibility.”

32. Lessons from the Netherlands - van Ginneken, Groenewegen and
McKee BMJ 2012
• eligibility criteria should be clear and not too broad
• administrative rules and regulations should be clear and workable for
budget holders
• adequate support should be available so that patients can use and
administer their budgets without the need for broker

33. Lessons from the Netherlands - van Ginneken, Groenewegen and
McKee BMJ 2012
“Increasing cost is not, however, the only problem to have emerged. There
have been credible reports of fraud and, although these may not be large in
revenue terms, their newsworthiness has provoked public debate.11 The
assessment of eligibility is not very strict and largely based on trust, while
accountability and control mechanisms are lenient.”

34. Barriers to implementation of personal budgets/self-directed support
• a personal budgets system that has not yet adapted to the needs of people with
dementia and their carers, and is overly complex and burdensome
• lack of knowledge and awareness of self-directed support among people with
dementia, carers and families
• ineligibility for care funding long before the time of crisis
• local authority concerns about the use of self-directed support by people with
dementia and general lack of enthusiasm
• challenging financial climate and funding pressures on local authorities
• lack of tailored and accessible information for people with dementia and their
carers, leading to a lack of understanding about personal budgets and direct
payments and concerns about their use

35. Barriers to implementation of personal budgets/self-directed support
• lack of addressing of real carer and family concerns about managing self- directed
support
• local markets that are not yet sufficiently developed to deliver a wide range of
different types of dementia service
• insufficient overall levels of funding in the system
• the cultural attitudes of health and social care professionals who are operating in
‘silos’
• mechanisms for direct payments for people who lack capacity

36. Barriers to implementation of personal budgets/self-directed support
• safeguarding concerns about using self-directed support
• overcomplicated monitoring and regulatory systems
• concerns about obtaining criminal record checks and reliable references for
personal assistants

37. Beresford (2009)
• National economy
• What about people with fluctuating and
deteriorating conditions?
• How will flexibility be ensured with
payments?
• What limits will be set to how service users
can spend the money?
• What will be included as part of people’s
individual health budget and what will
continue to be part of their core NHS
entitlement?

38. Hitchen, Williamson and Watkins (2015) Action
Research
• PHBs challenge traditional power dynamics between
professionals and service-users (Coyle, 2011).
• Improvements are evident across all disabilities (except
older people?) (Glendinning et al., 2008).
• One knowledge gap, however, concerns potential gains
for carers, as carers’ research is scant, but SCIE indicate
that carers could have a central role in enabling people
with mental health problems to take up and manage
their budgets (Newbronner et al., 2011)

40. Personalised medicine and
dementia
“The dream of personalised medicine is largely
powered bythe successes of the personal
computer and the smartphone. Can technology
do the same for genome testing by driving down
the price and improving the accuracy and speed?
By early 2013 the answer is maybe.”
“Personalized medicine or public health?
Bioethics, human rights, and choice” by
Distinguished Prof George J. Annas Boston
University School of Public Health, United
States

45. Rights based approaches

46. ‘Change here is probably not going to emerge
from a committee.’
Peter Watt

51. Rights based approaches
• mindful of all rights not just legal.
• lawful
• necessary
• proportionate - incl ‘least restrictive’
• (proactive)
• social movements ‘call to action’

52. Critical features
• Our society tends to value, people with intact cognition above
those whose cognition is compromised;’ it seems to be averse
to ‘thought diversity’ often.
• This had led to persons with dementia being treated in ways
that have actively undermined their personhood and infringed
their human rights.
• With regard to autonomy, until relatively recently people with
dementia were assumed incapable of making any decisions
simply because of the presence of dementia. This myth even
exists amongst clinical commissioners?

56. The “Independent Living Fund” - Fernandez et al.
2007 Jnl Soc. Pol., 36, 1, 97–121
The Independent Living Fund was established in the
late 1980s as a compensatory source of funds for people
with disabilities adversely affected by ongoing social
security reforms (Glasby and Littlechild, 2002; Barnes
et al ., 2004 ).
Its take up – as high as 22,000 people in 1993 – was
very high.

59. Convention on the Rights of
Persons with Disabilities (“CRPD”)
Article 1 - Purpose
Article 2 - Definitions
Article 3 - General principles
Article 4 - General obligations
Article 5 - Equality and non-discrimination
Article 6 - Women with disabilities
Article 7 - Children with disabilities
Article 8 - Awareness-raising
Article 9 - Accessibility
Article 10 - Right to life
Article 11 - Situations of risk and humanitarian emergencies
Article 12 - Equal recognition before the law
Article 13 - Access to justice
Article 14 - Liberty and security of the person
Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment
Article 16 - Freedom from exploitation, violence and abuse
Article 17 - Protecting the integrity of the person
Article 18 - Liberty of movement and nationality

60. Convention on the Rights of
Persons with Disabilities (“CRPD”)
Article 19 - Living independently and being included in the community
Article 20 - Personal mobility
Article 21 - Freedom of expression and opinion, and access to information
Article 22 - Respect for privacy
Article 23 - Respect for home and the family
Article 24 - Education
Article 25 - Health
Article 26 - Habilitation and rehabilitation
Article 27 - Work and employment
Article 28 - Adequate standard of living and social protection
Article 29 - Participation in political and public life
Article 30 - Participation in cultural life, recreation, leisure and sport
Article 31 - Statistics and data collection
Article 32 - International cooperation
Article 33 - National implementation and monitoring
Article 34-50 various issues including procedural aspects

68. Examples of human rights
breaches under EU law
• Abusive and degrading treatment (Articles 2, 3 and 8 ECHR)
• Malnutrition and dehydration (Articles 2, 3 and 8 ECHR)
• Neglect or carelessness by health and social care services (Articles 2, 3 and
8 ECHR)
• Lack of privacy in health and social care settings (Article 8 ECHR)
• Lack of dignity in respect of personal care needs (Article 8 ECHR)
• Inappropriate use of restraint and/or medication (Article 8 ECHR)
• Problems with communication, particularly where patients have complex or
profound learning disabilities (Article 8 ECHR)
• Negative, patronising and infantilising attitudes towards people with
learning disabilities (Article 8 ECHR)
• Discriminatory treatment of adults with learning disabilities in access to
• mainstream services on grounds related to their disability (Articles 2, 3, 8
and 14 EHCR)
• Fear and difficulties in making complaints (Article 8 ECHR)

69. Further issues
• Locked doors – what do we do about them?
• Restraint
• Medication - nb particular antipsychotics
• Incontinence- if someone gets really distressed during help with
personal care how should I intervene?
• Covert surveillance - e.g. CCTV
• Care home admission- Sometimes lack of community resources
mean that least restrictive option is not available i.e. care home or
hospital necessary because this is a restricted right and care is
insufficient to meet people’s needs
• Access to high quality health and social care
• Non-discrimination against ‘special groups’

74. Conclusions