Summary of the impact

The Personal Social Services Research Unit (PSSRU) at the University of Manchester (UoM) has run a programme of research examining community care of older people since 1996. The findings have informed key government decision-making around two important national policy initiatives between 2008 and 2013: (1) the development and implementation of Personal Budgets in Social and Health Care and (2) National Strategies to improve Dementia Services. This has affected the national provision of social care for older people and other adult social care users. In 2011-12, there were over 1.2 million people in England receiving social care affected by these policy changes (over 800,000 aged 65+), with a cost of £6,600m spent on their care (NHS and Social Care Information Centre).

Underpinning research

See section 3 for references [1-6]; see section 5 for corroborating sources (S1-S10); UoM researchers are given in bold. In REF3a and REF5 this case study is referred to as ICS-02.

Background to the research

Research by Challis's PSSRU staff (UoM, 1996-date) identified key characteristics of case management with devolved budgets as a mechanism to improve the quality and effectiveness of community care for frail older people, reduce nursing home admissions and enhance quality of life of older people and their carers (initial work Challis and Davies, Case Management in Community Care, 1986; followed by Challis et al., Care Management and Health Care of Older People, 1995; 2002). Our work in 1980s shaped the White Paper Caring for People (1989) (para 3.3.3) and the subsequent NHS and Community Care Act (1990). We then worked with the Department of Health (DH) to prepare implementation practice guidance. Following national implementation (commencement 1993), the research team, by then based at UoM, were funded by DH to evaluate the process of implementation in England. The impact reported in this case study relates to this work undertaken since 1996 by PSSRU at UoM.

Underpinning research at UoM

Key researchers:

• David Challis (Professor, 1996-date)
• Karen Stewart (Honorary Research Fellow,1999-2000; Research Fellow, 2001-2004; Research Fellow, 2010-date)
• Paul Clarkson (Research Associate/Fellow, 1998-date)
• Jane Hughes (Lecturer, 1997-date)
• Mark Wilberforce (Project Manager, 2008-date)

Our work explored the emerging arrangements for case management and coordinated care provision, and identified patterns of change from 1993 onwards. It showed significant variation in care management arrangements across England, with very little evidence of the presence of intensive care management, devolved budgets or integration of health and social care at this level, despite these being criteria determining outcomes in the previous research [1-3]. Our findings were fed directly to policy makers, appeared in DH Social Services Inspectorate publications through the period, were cited in Audit Commission reports (e.g. Coming of Age, 1997; Supporting Older People, 2004),and were the subject of a full chapter in the report of the Royal Commission on Long Term Care (1999).

Subsequently, devolving budgets to the front line, closer to patients and service users was taken up more widely by others, initially in the learning disability field. These ideas fed into the proposals for individual budgets in the Social Care Green Paper of 2005 and the White Paper Our Health Our Care Our Say (2006). The UoM team, in collaboration with other DH-funded social care researchers, were requested by DH to evaluate a national pilot of Individual Budgets, devolved to the service user or patient. A randomised controlled trial examined the outcomes of implementation of individual budgets (a form of personal budget) in 13 pilot local authorities along with a detailed process and contextual study (IBSEN) [4]. The key findings identified variations in benefit for different user groups of the model of personal budget employed (predominantly a direct payment), as well as important facets of staff response and impact relevant to wider implementation. Of major relevance were poor outcomes for older people of the direct payment approach. Our findings recommended care manager held budgets as an alternative option for older people [4].

Further work on case management and community care continued, and included case management for older people with dementia, based in a multidisciplinary community mental health team. This indicated enhanced community tenure of older people and improved quality of life for their carers [5, 6]. Building on this we undertook work to inform Objective 6 of the National Dementia Strategy (2009) (see S6 below) by collating and synthesising existing evidence from PSSRU studies alongside new empirical data to adjudge the relative merits of different approaches to the provision of home care for people with dementia. Summarised for commissioners, it was placed on the DH website for its Dementia Commissioning Pack.

References to the research

Details of the impact

See section 5 for numbered corroborating sources (S1-S10).

1. Personal Budgets in social care and health care

Personal Budgets in Social Care were introduced in 2008. The national evaluation of the Individual Budgets pilot projects (The "IBSEN" Report [4]), undertaken by the UoM team in collaboration with other social care research centres, informed the development and implementation of national policy on the individualisation of care within adult social care services.

This research influenced and fed into national and local policy development through meetings of the research team with Ministers and policy makers. The former is evidenced in the White Paper Shaping the Future of Care Together (Cm 7673, 2009) and the documents Personal Budgets for Older People: Making it happen (S2) and A Vision for Adult Social Care: Capable Communities and Active Citizens (S3). The direction of the policy was altered as a direct consequence of our research findings, most notably in the care of older people. New DH guidance was issued indicating the use of approaches derived from our earlier case management research, with the option of care manager held budgets for older people (S1, S2).

Reach and significance of the impact

• The IBSEN evaluation [4] prompted a specific Government response to the findings for implementation of Individual Budgets, particularly with older people, and continues to be a focus of Government concern in policy delivery (S1-S3). Upon completion of the pilots, the DH invested £520m in a national roll-out. Since personal budgets are now to become the norm, this is relevant to all people in receipt of social care. In 2011-12 this involved over 1.2 million people in England (800,000 plus over 65 years) with an expenditure of £6.6 billion spent on community care. Currently, £3.3 billion is allocated through personal budgets reaching 76% of all currently eligible adult social care users (ADASS Survey, 2013).
• The IBSEN evaluation continues to influence the Government's policy agenda, with the research findings forming part of the evidence supporting the recent White Paper Caring for our Future (Cm 8373, 2012 - impact assessment) (2012) contributing to the calculation and assessment of the likely costs and benefits of policy expansion.
• The IBSEN evaluation was critical to the development of wider Government policies, most notably the introduction of the Individual Budget principles in health care. The published policy document announcing the piloting of new Personal Health Budgets used the evaluation findings to support its case for the policy, in addition to highlighting concerns raised by IBSEN over implementation with respect to older people (S4).
• The IBSEN evaluation was used to underpin key elements of the Work and Pensions White Paper `Raising Expectations and Increasing Support' (Cm 7506, 2008) in providing the evidence base to support the Right to Control trial. This initiative sought to integrate multiple benefit and funding streams into a single budget under the control of the recipient.
• The IBSEN evaluation informed the House of Commons Health Select Committee's investigation into the social care system in 2009. The final report reproduced summary findings within the main text and also used IBSEN data to raise concerns with respect to age discrimination in social care (S2, S4) (Cm 7673).

2. National Strategies to improve dementia services in England and internationally

The UoM team's research exploring the range of community support available for people with dementia has informed policy and implementation of dementia care in England, Ireland, France and the Netherlands. The roll out of Objective 6 of the National Dementia Strategy in England (S6), Community and Personal Support, was influenced through dissemination of our findings to policy makers.

Reach and significance of the impact

• The evaluation of case management for older people suffering from dementia was cited in the National Dementia Strategy (S6) as providing evidence of the value of early diagnosis and intervention to improve quality of life and delay or prevent unnecessary admission into care homes (p34). The team also advised a special meeting of the French Fondation Plan Alzheimer (sic) in Paris on developing case management in Dementia Care in 2010 (S9), and also the Netherlands Institute for Long Term Care (Vilans) in 2007.
• Research examining the relative merits of different approaches to the provision of home care for people with dementia informed the DH Commissioning Pack for early intervention and prevention in the delivery of community personal support. It is located on the DH website http://dementia.dh.gov.uk/contracting-community-support-services/ and the summary findings from this study are also to be found on several local NHS Commissioning websites. It is also cited in the policy document Case for Change — Community Based Services for People Living with Dementia (S7) and the All-Party Parliamentary Group on Dementia (S8) inquiry into cost effective dementia services. The work is also used extensively in the planning document of the Dementia Strategy for Ireland (S10).

Sources to corroborate the impact

Individual/Personal Budgets

S1. Department of Health (2008) Making Personal Budgets Work for Older People: developing experience. London: Department of Health.

S2. Department of Health (2010) Personal Budgets for Older People: Making it happen. London: Department of Health.

S3. Department of Health (2010) A vision for adult social care: Capable communities and active citizens. London: Department of Health

S4. Department of Health (2009) Personal Health Budgets: First Steps. London: Department of Health.

S5. House of Commons Health Select Committee (2010) Social Care: Third Report of Session 2009-10, Volume 1 (HC22-I). London: TSO

Dementia Care

S6. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy, London: Department of Health.

S7. Department of Health (2011) Case for Change — Community Based Services for People Living with Dementia, London: Department of Health.

S8. All-Party Parliamentary Group on Dementia (2011) The `£20 Billion Question — An Inquiry Into Cost Effective Dementia Services Improving Lives Through Cost Effective Dementia Services, London: House of Commons.

S9. Fondation Alzheimer (2010) Case Management Workshop Report, Fondation Alzheimer: Paris. http://www.fondation-alzheimer.org/sites/default/files/BOOK.pdf

S10. Cahill, S., O'Shea, E. and Pierce, M. (2012) Creating Excellence in Dementia Care: A research review for Ireland's Dementia Strategy, Trinity College Dublin and University College Galway, Ireland.