Summary of the impact

The importance of person-centred social support has been recognised by successive governments as central to the development of effective and supportive social care services. The research led by Brunel and funded by the DoH and the Joseph Rowntree Foundation, made a substantial contribution to the enhancement of UK social care policy and practice in relation to the personalisation agenda. Parliamentary committees and policy consultation used the research to develop new social care policy. Standards of service care delivery were developed and implemented in partnership with service users; these were adopted at a policy and practice level. The development and use of evidence based practice guides, training programmes and web resources facilitated the successful adoption and implementation of person-centred support nationwide. In summary, public debate was influenced, equality and empowerment for service users was advanced, national policy and practice enhanced, health and welfare improved and economic impacts achieved.

Underpinning research

Professor Peter Beresford, Director of the Centre for Citizen for Participation, at Brunel University, was in post throughout the key research periods (1995-96 and 2007- 2011) and impact period (2008-13). In 1995, Beresford and Harding were awarded funding from DoH (£30K), to identify service users' and carers' views about the delivery of social care services in England and Wales. Together with Harding, who was Policy Officer for the National Institute for Social Work at that time, Beresford published `The Standards We Expect: what service users and carers want from social services workers'¹.

The report fuelled a need to identify how the aspirations of service users could be met which led to the Joseph Rountree Foundation (JRF) issuing a call, entitled `The Standards We Expect'. Beresford, led a successful funding bid (£500,000), in collaboration with a Branfield and Turner from Shaping Our Lives (service user organisation), Bewley & Dattani-Pitt from Values into Action (collaboration of non-disabled and disabled people), Fleming from the Centre for Social Action (De Montfort University) and individual experts including Butt, Flynn, Croft, Patmore. Glynn was employed as the project worker for the 2007-2011 project period. The project aimed to identify: what person centred support means to people who use, work in and manage services and what barriers and facilitators there are to implementation.

At the time the study was funded, the government, through Putting People First (2007), wanted to transform social care; they introduced the personalisation approach/ person-centred approach as the primary model for future social care. However there was a lack of evidence to support how person centred policy could be best be implemented. The JRF study was ideally timed as it would supply that evidence.

The JRF project adopted a user controlled research methodology, with service users at the heart of collaborations with key stakeholders. Key concerns of such research were to equalise research relations across service users and researchers through supporting the empowerment of service users. This approach entailed service users as researchers in the development phase of the project, in its formulation, governance and in shaping its dissemination strategy, which was determinedly participatory in nature.

Eight research and development sites and 12 service network sites were set up involving over 350 individuals. In each site, activities included the creation and support of forums for each stakeholder group so that they could come together to develop and exchange their knowledge and experience and collaboratively implement the 11 standards of person-centred support; their activity was monitored, analysed and collated as research findings and evidence.

Findings were reported in JRF interim report² and final summary³, as well as in a book⁴. These findings highlighted that there was a strong consensus as to the meaning of person centred care, that there was support for its implementation and for the eleven standards for enhancing service care delivery were proposed. Through the development sites, it was apparent that implementation was achievable and that many of the barriers could be overcome. However, two barriers, which were not possible to overcome at a local level, which needed to be overcome before mainstream implementation was achievable, were the continued existence of an antagonistic/institutionalising culture in services and the chronically inadequate level of social care funding.

Evidence from the interim report were fed into a number of stakeholder forums: the Health Select Committee Inquiry into Social Care, as invited oral evidence; regional, national and international research, policy and professional conferences and events; key government bodies' consultations and inquiries e.g Ministerial Reference Group for Social Care including the Department of Health, Transforming Adult Social Care Programme Board, Adult Social Care Work Force Strategy Board, Social Work Reform Board, Ministerial Group for Adult Social Care and Dilnot Commission Reference Group. In addition the findings were discussed with Ministers and lead civil servants, through a Society Guardian Round table and a launch event. The `Shaping Our Lives' user-led organisation which grew from the original 1996 report, was then funded as a Department of Health Strategic Partner.

JRF funded an additional two year `influencing stage' in 2010-12 (£97k) to maximise the impact of the research findings; this award was used to fund a number of activities and the publication of guides, resources and training programmes to promote the implementation of person centred support.

References to the research

2. Glynn, M. Beresford, P. with Bewley, C. Branfield, F. Butt, J. Croft, S. Dattani-Pitt, K. Fleming, J. Flynn, R. Patmore, C. Postle, K and Turner, M (2008), Interim report. Person-centred Support: What service users and practitioners say, York, Joseph Rowntree Foundation.
http://www.jrf.org.uk/publications/person-centred-support-what-service-users-and-practitioners-say
There were at least 10,000 downloads of the interim report, as well as hard copies distributed; an easy read version was made available for service users and people on low income.

Details of the impact

The `Standards We Expect' project evidenced the value of a particular model of social care reform, which addressed both bottom-up and top-down processes. This twin track approach to achieving change has been reflected in a range of impacts. Impacts took place after the publication of the interim findings (2008); during the main project phase (2008-2010) and during the dissemination/influencing phase (2010-2013).

1. Impacts on society.

1.1 Political debate and social care reform was advanced through the provision of high profile evidence to policymakers, politicians; and leaders; it challenged established norms of social care delivery and shifted existing understandings of the way in which person-centred support should be optimally implemented. Evidence from the first stage findings were fed into the Health Select Committee Inquiry into Social Care as invited oral evidence and numerous regional, national, international research, policy and professional forums. The `final summary' research findings were showcased at an invited parliamentary launch. Formal oral evidence was subsequently invited and presented to key government bodies, through consultations and inquiries including the Ministerial Reference Group for Social Care; Social Work Reform Board; Dilnot Commission Reference Group; Transforming Adult Social Care Programme Board; and the Adult Social Care WorkForce Strategy Board. Findings were also drawn upon by the National Commission on Personalisation established and conducted by Hampshire County Council. The Minister for Social Care and his lead civil servant held two Ministerial roundtables for social care leaders; Beresford presented formal evidence at both. The Minister reported reading the research publications, and as a result had formally noted that the forthcoming white paper on social care reform needed to include service user involvement.

1.2 Public debate was influenced through significant media coverage including two Radio 4 You and Yours Specials on Social Care Reform, Radio 5 Wake Up To Money, a Guardian and Community Care (professional journal) article, blog and podcast, plus interviews for Housing and Public Finance, radio and wide coverage in user led and disabled people's media including blogs, social networking sites etc. This reflected both top and bottom interest; resulting in additional major conference invitations.

1.3 Economic impacts were achieved through better access to financial opportunities for services users and carers through the enhanced use of direct payments and personal budgets. For example, a group of people with learning difficulties were supported to produce an easy read/illustrated version of the project's findings, which subsequently supported other people with learning difficulties to access and make use of person-centred care.

1.4 Equality and diversity was advanced through ensuring that age, ethnicity, nature of impairment, gender, sexuality, class, culture and belief were fairly attended to through the policy reforms. This was achieved through the project design and dissemination e.g. invited oral evidence was delivered to the Joint (Parliamentary) Committee on Human Rights, Disabled People and Independent Living (June 2011). Improved social inclusion was achieved through involving service users as researchers in the development phase of the project, in its formulation, governance, and in shaping its dissemination strategy. This equalised research relations and supported the empowerment of service users/disabled people in bringing about broader change.

2. Impacts on health and welfare: impact on practitioners and professional services were achieved through the development of accessible evidence based information, training, and support for service users, practitioners, carers and their organisations. These have facilitated optimal implementation of person-centred support in the UK.

2.1 The first evidence based practical guides were produced for service users, practitioners and carers. These included the consensus definition of what person centred support means to people who use, work in and manage UK services; identifying what the barriers are to providing it and how those barriers can be overcome: the guides included one written by and for people with learning disabilities, an exemplar of a local case study, a guide on choices for the end of life, a guide for practitioners, a guide for service users, and a guide to personalisation training approaches. These gave both detailed local research findings (as models for others wishing to take forward similar work locally) and provided practical research-based guidance for practitioners, service users and carers wanting to take forward person-centred support. Forewords by key people in each field positioned them influentially. For example, four of the six:

• Croft, S. Bewley, C. Beresford, P. Branfield, F. Fleming, J. Glynn, M. Postle, K. (2011) Person-Centred Support: A Guide to person-centred working for practitioners (foreword by Moira Gibb, Chair, Social Work Reform Board)
• Bewley, C. Branfield, F. Glynn, M. Beresford, P. Croft, S. Fleming, J. Postle, K. (2011) Person-Centred Support — A Service Users' Guide (foreword by, Ossie Stuart, Disability Consultant)
• Fleming, J. Glynn, M. Griffin, R. Beresford, P. Bewley, C. Branfield, F. Croft, S. Postle, K. (2011) Person-Centred Support: Choices for end of life care (foreword by, Eve Richardson, Chief Executive, National Council for Palliative Care) (research report)
• Barrett, G. Brennan, M. Brown, D. Burton, N. Gordons, W. and Watkins, C. from People First Lambeth,with support from Saihkay, H. and Bewley, C. (2011) Supporting People: Towards a person-centred approach, Summary with easy words and pictures (forewords by, Mark Brookes, Consultant with learning difficulties and Peter Hay, President, ADASS)

2.2 Training materials and web resources have been produced: two short films were developed to train the Directors of Adults and Children Services about the evidence based approach to implementation of person-centred support; they were shown at the annual national social services conference organised by the Associations of the Directors. Shaping Our Lives (SOLNET), a national networking website for 400+ service user organisations, was used to actively support the implementation of the person centred care. Practitioners, their organisations, carers and service users and their organisations, both in local sites and more generally have reported the gains from the project's learning and highlighted the value of adopting them. For practitioners, the impacts have included enhanced capacity to practice in a more person-centred/personalised way and, for service users and carers, enhanced ability to access and press for such support. Service users and carers have been empowered through information, support and partnership working, to access person-centred support and influence the provision of policy.

2.3 Improved social care services: through its development phase, the project directly impacted on eight service sites and a wider network of 12 service settings, supporting them to work in more person-centred ways, as well as supporting service users and carers associated with sites. Over 350 people have directly benefitted through being involved in the implementation sites; they have benefitted from more effective person centred support, knowledge exchange, training opportunities and practical support. Three information exchange and developmental national `get-together' events have facilitated national implementation and enhanced social care services.

Sources to corroborate the impact

1. Evidence of impact 1.1 — `Political debate and social care reform was advanced' House of Commons — Health Select Committee- Written JRF evidence influenced policy development (SC 10) October 2011
http://www.publications.parliament.uk/pa/cm201012/cmselect/cmhealth/1583/1583vw08.htm

2. Evidence of impact 1.2 - `Public debate was influenced' www.disabilitynewsservice.com "The Liberal Democrat MP Norman Lamb, the chief parliamentary and political adviser to Nick Clegg, the Deputy Prime Minister, welcomed the report." Recognition of an outdated system and underfunding key barriers to personalisation (18 May 2011).
http://www.candocango.com/beresford-outdated-system-and-underfunding-key-barriers-to-personalisation/#ixzz1N737joDD

3. Evidence of impact 1.3 — `Economic impacts were achieved' Guardian Society Round Table Discussion report (Society Guardian, 10 August 2011, p32). "Health and social care cannot be aligned if their funding systems remain different, the roundtable heard."

4. Evidence of impact 1.4 — `Equality and diversity was advanced' Jane, Baroness Campbell of Surbiton, DBE, Commissioner of the Equality and Human Rights Commission "This book (Supporting People) is another of Peter Beresford and colleagues' incisive accounts of what those who need person-centred support say about how it should be developed to effectively increase their life chances."

5.Evidence of impact 2.1 — `The first evidence based practical guides were produced.' The six publications can be accessed at http://www.jrf.org.uk/publications/transforming-social-care- person-centred-support

6.Evidence of impact 2.2 — `Training materials and web resources have been produced' Rosemary Trustam, Practitioner. Social Caring published statement, Social Care Association (2011). "This is a book stakeholders at all levels should read — it has clear public policy and management lessons, but the words of service users and the case examples used on their own have a resonance for practitioners to remind them to listen better. I would also recommend readers look at the service user material which is on the website www.shapingourlives.org.uk"

7.Evidence of impact 2.3 — Improved social care services Statement from People first Lambeth. Guide2Care Today (information for care providers) http://www.guide2care.com/

8. Contact — Supporter Representative, People First Lambeth.

9. Contact — Strategic Director, Birmingham City Council

10. Contact — Chief Executive of the College of Social Work