Personalisation for older people and direct payments –
time to re-discover person-centred care?
John Woolham, Guy Daly, Nicole Steils, & Katrina Ritters
Faculty of Health and Life Sciences
[email protected]
Structure
1.
2.
3.
From person centred care to personalisation
Personal budgets and direct payments
Perspectives:
a. Policy analysis of issues arising from PBs & DPs
b. Policy analysis of issues arising from PB and DPs
specifically to older people
c. Research evidence
4. Conclusions
1. From person centred care to personalisation
• ‘Person-centred’ support easy to describe
• ….but hard to achieve
–
–
–
–
Case /care management for older people
IPPs & shared action planning for people with learning disabilities
Person-hood for people with dementia
Transference of learning from project to service always difficult
• The term ‘personalised’ has replaced ‘person centred’
–
Often seen as the same by practitioners but
• Greater emphasis on some values: ‘self-direction’, ‘user empowerment’, ‘personal choice’,
• ‘Support’ is now used alongside or instead of ‘care’
• User rather than professional definitions of need
–
Adult Social Care staff refer to people with social care needs as ‘customers’ not
‘clients’ or ‘service users’
1. From person centred care to personalisation
•
Definitions vary.
‘Personalisation means thinking about care and support services in an entirely different
way. This means starting with the person as an individual with strengths, preferences and
aspirations and putting them at the centre of the process of identifying their needs and
making choices about how and when they are supported to live their lives’.
Carr (2011) p. 3.
‘Individuals not institutions take control of their care. Personal budgets, preferably as
direct payments are provided to all eligible people. Information about care and support is
available for all local people, regardless of whether or not they fund their own care’
Department of Health Vision for Social Care. Nov. 2011 p. 8.
2. Personal budgets and direct payments
• Direct payments and personal budgets seen as the means by
which personalised care and support will be delivered.
• A (very) short history of personal budgets and direct payments
–
–
–
–
Independent living fund, cash for care
Campaigns by younger disabled people for more control over care
Direct Payments Act 1997
‘In Control’ and campaigning for self-directed support
• Attracted local authority support
• Led to plethora of small scale local studies from local authorities
• In Control Evaluations 1 & 2.
–
DH endorsement
• Commissioned IBSEN
• £500m ‘Transformation Grant’
2. Personal budgets and direct payments
•
•
•
Transformation Grant was announced
without reference to research evidence
(so much for ‘what works’!)
Some important findings from IBSEN
ignored.
Subsequent research & policy guidance
largely about how to make PBs and
Direct Payments work - not whether it
was the right approach.
‘….older people did not find the individual
budget system used in the pilot as easy to
use as the other groups, and they did not
appear to like the idea of managing their
own support’.
Extract of IBSEN team summary
‘Since this research was undertaken more
support has been put in place for older
people and early indicators have shown that
this has transformed their experiences of
using individual budgets. We will conduct
further research to investigate the impacts
further.’
Phil Hope M.P., Minister of State for Care
Services
3. Views:
a. Policy analysis of issues arising from PBs & DPs
Advocates
•
•
•
•
•
•
•
•
Better outcomes for social care users
Greater empowerment of recipients,
thereby conferring more dignity and
personal responsibility
fuller citizenship and greater inclusion
more contestability/competition (aimed
at using market mechanisms to improve
quality) and diversity in local care
economies leading to:
greater choice and more effective use of
public money through:
greater efficiency in targeting of care
and:
reduced CASSR care management input
Response to failures of care
management
Sceptics
•
•
•
•
•
•
Agendas of disabled people subverted by
government
Public services should not be about delivering
‘choice’
Citizenship and universality undermined by
consumerism and choice
Downsides to choice
Transfer of responsibility from state to
individuals & privatisation of risk
links to wider disquiet about public sector
reform:
–
–
–
–
shrinking the state,
replacement of universal social rights with
(increasingly rationed) consumer choice,
the dominance of managerial not professional
cultural values in CASSRs,
potential fragmentation of care provision
following marketisation.
3. Views:
b. Policy analysis of issues arising from PBs & DPs specifically
relating to older people
Older people are the largest consumers of
social care services.
Values underpinning key policy documents
(e.g. PPF 2007, Shaping the Future of Care
2009) are problematic for older people
•
People who can exercise independence and
self-determination & those who can’t:
‘choiceandcontrol’ vs ‘careandprotection’
(Barnes 2011)
•
Re-defining of care as a way to restore people
to play a role as active citizens – reshaping a
fundamental human need to something
instrumental and narrowly defined.
(Lloyd 2010)
•
Older people personal budget
and citizenship
‘For many older people, achieving
full citizenship is not an ‘aim’ in the
same way as…for many younger
disabled people. Most older people
have already experienced citizenship
in the form of an active role in
family, work and community life: it
is not an unrealised aspiration’.
(Orellana 2012)
Are older people being ‘squeezed
into a one-size-fits-all model of
personalisation’?
3. Views
c. Research evidence
Glasby (2012)
•
•
•
both sides appealing to evidence
(advocates = any evidence will do,
sceptics = not enough, evidence,
evidence not good enough)
Calls for a move away from formal and
quantitative research towards a more
inclusive approach, combining research
with practice wisdom.
But… not all findings created equal
•
•
Not many quantitative but many
qualitative: too little attention to
quantitative not too much
Tendency to generalise too much from
qualitative studies
3. Views
c. Research evidence
Reviews:
Manthorpe et al (2011) 161 studies.
•
Many studies small scale
•
Some were commentaries not empirical
studies
•
Some reported on experiences of people
most likely to be offered /take up a
budget so bias to positive findings
Zamfir (2013) 68 studies specifically focused
on older people
• Little evidence PBs had improved lives
of older people
• Where improvements had occurred this
was because support was adequate
3. Views
c. Research evidence
Empirical studies
In Control (x 3)
•
•
First two studies low numbers, sampled from people likely to be favourably disposed to
PBs
Third study (POET) found older people less likely to respond positively to budget
ownership but a precondition was effective support.
IBSEN
•
•
•
Best study to date
Evidence that PBs can work for younger adults
No evidence they work for older people
3. Views
c. Research evidence
Own work:
•
•
•
No evidence of benefit to older people
compared to younger adults
Much larger budget size did not translate
into much better outcomes for older
direct payment users compared to
‘traditional’ users (Woolham & Benton
2012)
Outcomes not significantly different for
older DP and MPB users (2014,
unpublished)
Dignity
Control
Accommodation
100
90
80
70
60
50
40
30
20
10
0
Occupation
Cleanliness
Food & Drink
Safety
Social
Dignity
Control
Accommodation
100
90
80
70
60
50
40
30
20
10
0
Occupation
Cleanliness
Food & Drink
Safety
Social
Figure 8. Spider graph showing profile of Figure 9. Spider graph showing profile
ASCOT social care related quality of life
of ASCOT social care related quality of
outcomes for direct payment users
life outcomes for managed personal
Figure 5.
4. ADL
cost
for for
older
respondents
65+(Overall
comparing
bootstrapped
Figure
GHQand
costscores
scores
older
respondents
(65+) only,
comparing
(Overall
SCRQoL
=and
0.75)
budget
users
SCRQoL
= 0.70).
data for ‘traditional’
userspackage
(left) and
budget
(right).
bootstrapped
data forpackage
‘traditional’
users
(left)holders
and budget
holders (right).
Conclusions:
Do Direct payments and personal budgets
work for older people?
•
•
•
•
•
Campaigns for direct payments and self
directed support led by younger adults not older people
Older people do not achieve such good
outcomes as younger adults when given
a Direct Payment.
The ‘model’ of personalisation and use
of direct payments as the means of
achieving personalised support doesn’t
suit many older people:
The size of the direct payment doesn’t
enable people to have much more than
their basic care needs met
Self direction and choice and the
organisation of the direct payment is
often mediated by a relative
Conclusions:
•
•
•
•
Restoration of lost abilities to enable
full community participation isn’t always
realistic
Independence isn’t always what older
people people want.
Empowerment may mean the ability to
ask others to do things for or with them
rather than them having to do it
themselves.
Control may be more effectively
exercised through opportunities for
older people to develop relationships of
trust and friendship.
•
To achieve this we may need to think
less about choice and much more about
what good care looks like.
Good care depends on the quality of the care
relationship.
‘Commissioning on the basis of ‘time and
task’ has excluded the costs of the
emotional labour needed to build a
relationship with the user’
Lewis & West 2014 p.5.
This has been largely overlooked by English
policymakers.
Conclusions
The effective use of direct payments and
user control reinforces a view of care-ascommodity in which customer-is-king.
Our research suggests that though older
people want choice and control, they want
to exercise it in a different way.
Person-centred care may offer a better
approach than personalised support to the
kinds of issues facing older people but
would require
•
•
•
Skilled staff
Matching carer with person with care
needs to enable relationship building
Adequate remuneration
Selected references
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Barnes, M., (2011) ‘Abandoning Care? A Critical Perspective on Personalisation from an Ethic of Care’. Ethics and Social
Welfare 5(2). p. 153-167.
Beresford, P. (2009b) ‘Whose Personalisation?’ Compass: Direction for the Democratic Left Think Pieces, No. 47 p. 1-5.
Boyle (2013) The Barriers to Choice Review. How are people using choice in public services . London, Ipsos MORI.
Carr, S., (2013) Improving personal budgets for older people: a research overview. Adult Services Report 63London, Social
Care Institute for Excellence.
Clarke, J., Smith, N., and Vidler, E. (2006) ‘The Indeterminacy of Choice: Political, Policy and Organisational Implications’,
Social Policy and Society 5(3), (p.327-336).
Clarke, J., Newman, J, and Westmarland, L, (2008) ‘The Antagonisms of Choice: New Labour and the reform of public
services’. Social Policy and Society, 7(2) p.245-253.
Daly, G., (2012) Citizenship, choice and care: an examination of the promotion of choice in the provision of adult social care.
Research Policy and Planning Vol. 29 (3) p. 179-190.
Department of Health (2003) ‘The Government’s Expenditure Plans 2003 Local Authority Personal Social Services Gross
Expenditure by Client Group, 2001-02’. Chapter 6. p.73.
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4072527.pdf.
Gateway ref: 2003 accessed 14.01.10.
Department of Health (2008) Making personal budgets work for older people: developing experience. Department of Health,
Gateway ref. 10733.
Department of Health (2008) Local Authority Circular letter 2008 (1).Transforming Adult Social Care Department of Health
Gateway ref. 9337
Department of Health (2010) A Vision for Adult Social Care: Capable Communities and Active Citizens. London, Department of
Health.
Duffy, S., (2006) Keys to citizenship: a guide to getting good support for people with learning disabilities. Birkenhead,
Paradigm ltd.
Duffy, S., (2008) Personalisation in social care Consumer Policy Review Vol. 18 (5) p.132-136)
Duffy, S, and Waters, J. (2008) ‘The Economics of Self Directed Support’, in Poll, C, and Duffy, S. (eds), A Report on in
Control’s Second Phase Evaluation and Learning 2005-2007. London, In Control Publications
Selected references
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Ferguson, I. (2007) ‘Increasing User Choice or Privatizing Risk? The Antinomies of Personalization’, British Journal of Social
Work 37(3), p. 387-403.
Glendinning, C, Challis, D, Fernandez, J.L, Jacobs, S, Jones, K, Knapp, M, Manthorpe, J, Moran, N, Netten, A, Stevens, M, and
Wilberforce, M. (2008) ‘IBSEN: Evaluation of the Individual Budgets Pilot Programme, Final Report’, Social Policy Research
Unit, University of York).
Hatton, C, Waters, J, Duffy, S, Senker, J, Crosby, N, Poll, C, Tyson, A, O’Brien, J, and Towell, D. (2008) A report on In
Control’s Second Phase Evaluation and Learning 2005-2007 London, In Control Publications.
Hatton, C., and Waters, J. (2011) ‘The National Personal Budget Survey’. London, In Control and Lancaster University.
Hatton, C, and Waters, J, (2012) Older people and personal budgets: A re-analysis of data from the National Personal
Budget Survey 2011 Centre for Disability Research, Lancaster University.
Health and Social Care Information Centre (2013a) Personal Social Services Expenditure and Unit Costs in England 2011-2012:
Final Release table 6.1. http://www.hscic.gov.uk/ accessed 23.05.14.
Health and Social Care Information Centre (2013b) Community Care Statistics, Social Services Activity, England - 2012-13,
Final release [NS] 11:37 May 29, 2014 - 09:30 December 17, 2013Publication date: December 17, 2013.
http://www.hscic.gov.uk/ Accessed 23.05.14.
HM Government (2007) Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care.
London, HMG.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081118 accessed
08.10.11.
H.M. Government (2009) Shaping the Future of Care Together. Green Paper, Gateway ref. 1774
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_100819.pdf accessed 13.01.10
Leadbeater, C. (2004) ‘Personalisation through Participation: a new script for public services’., London, Demos.
http://www.demos.co.uk/files/personalisationthroughparticipation.pdf?1266491309 accessed 07.07.11.
Leadbeater, C, Bartlett, J, and Gallagher, N. (2008) ‘Making it Personal’, London, Demos.
Selected references
•
•
•
•
•
•
•
•
•
•
•
•
•
Lewis, J, & West, A, (2014) Re-shaping social care services for older people in England: policy development and the problem
of achieving ‘good care’ Journal of Social Policy 43 (1) 1-18.
Lloyd, L. (2010) The Individual in Social Care: The ethics of care and the ‘Personalisation Agenda’ in services for older people
in England. Ethics and Social Welfare Vol. 4 (2) p.188-200.
Manthorpe, J, Hindes, J, Martineau, S, Cornes, M, Ridley, J, Spandler, H, Rosengard, A, Hunter, S, Little, S, and Gray, B.
(2011) Self Directed Support: A review of the Barriers and Facilitators (Edinburgh, Scottish Government Social Research).
Moran, N, Arksey, H, Glendinning, C, Jones, K, Netten, A, and Raibee, P, (2012) Personalisation and Carers: Whose rights?
Whose Benefits? British Journal of Social Work 42, 461-479 doi:10.1093/bjsw/bcr075.
Newbronner, L, Chamberlain, R, Bosanquet, K, Bartlett, C, Sass, B, and Glendinning, C. (2011) ‘Keeping Personal Budgets
Personal: learning from the experiences of older people, people with mental health problems and their carers’. Adult
Services report 40, London, Social Care Institute for Excellence.
Orellana, K., (2010) Personalisation in Practice: lessons from experience: Making Personal Budgets, support planning and
brokerage work for people in later life London, Age UK.
Poll, C, Duffy, S, Hatton, C, Sanderson, H, and Routledge, M. (2006) A Report on In Control’s first phase 2003-2005. London,
In Control Publications.
Raibee, P, (2013) Exploring the Relationships between Choice and Independence: Experiences of Disabled and Older People.
British Journal of Social Work 43, 872-888 Advance access April 2012 DOI: 10.1093/bjsw/bsc022.
Roulstone, A & Morgan, H (2012) Neo-Liberal Individualism or Self Directed Support: Are we all speaking the same language on
modernising adult social care? Social Policy and Society Vol. 8. (3) p 333-345 doi: 10.1017/S1471746409004886.
Slasberg, C., Can Personalisation be a reality for older people? (2010) Working with older people Vol14 (3) p.15-22.
Slasberg, C., Beresford, P. & Schofield, P. (2012) How self-directed support is failing to deliver personal budgets and
personalisation. Research Policy and Planning, Vol. 29 (3) p. 161-178.
Woolham, J. & Benton, C., The Costs and Benefits of Personal Budgets for Older People: Evidence from a Single Local
Authority. (2012) British Journal of Social Work, Advance Access, published July 20 th 2012 p. 1-20. Doi:10.1093/bjsw/bcs086.
Zamfir, M., Personalisation through Personal Budgets: its Effectiveness for Older Adults in Social Care Services. Findings from
an English based literature review (2013) Research Policy and Planning 30 (2).
Download

`Personalisation means thinking about care and support services in