The participation of adult service users, including older people, in developing social care


As well as the resources listed below, the references include links to electronic versions of many of the books and reports mentioned in the text.

Acting Up

Acting Up, part of Matchbox Theatre Trust, has been working with people with communication difficulties since 1987, and has pioneered multimedia communications' training with services in the voluntary and statutory sectors. Acting Up is committed to working in ways that are person-centred and led by service users.

Action 4 Advocacy

Action for Advocacy (A4A) is a resource and support agency for independent advocacy schemes. Their website includes details of publications, fact sheets and details of advocacy groups in England and Wales.

Audit Commission

The Audit Commission has produced two reports with advice on how to achieve better consultations.

Better Regulation Commission

The Better Regulation Commission (BRC), formerly the Better Regulation Taskforce, has produced a report on participation in social care regulation, including a version in an accessible format.

Care Services Improvement Partnership (CSIP)

The Health and Social Care Change Agent Team, who are part of CSIP, have produced guides to user involvement with older people with mental health problems. It is also possible to access the Dementia North report on involving people with dementia (Cantley et al., 2003) via this link.

Citizens’ juries

Citizens’ juries have been used in some areas to discuss issues of local importance with a panel, or jury, of citizens. While many of these initiatives have been 'top down’, some have been developed and run by local communities themselves.

Department for Education and Skills

The Department for Education and Skills have funded the Participation Works gateway which provides a single access point to comprehensive information on children and young people’s participation including policy, practice, networks, training and innovative ideas from across the United Kingdom.

Department of Health

The Department of Health website includes a number of resources relevant to participation including:

Expert patients programme

Expert patients programme.

Disability Alliance

The Disability Alliance is a campaigning organisation concerned with poverty among disabled people. Its website offers advice on benefits and links to its publications such as the 'Disability Rights Handbook'.

The Disability Archive UK

The Disability Archive UK is hosted by the Centre for Disability Studies at the University and provides freely accessible papers on disability issues. They are not to be used for commercial purposes without permission.

Improvement and Development Agency (IdeA)

IDeA Knowledge delivers in-depth improvement news and examples of good practice from councils across England and Wales, and provides access to the IDeA’s range of tools and services. It includes details on initiatives to engage with local communities and discussion forums.


INVOLVE is a national advisory group, funded by the National Institute for Health Research, which aims to promote and support active public involvement in NHS, public health and social care research. It produces reports and newsletters, maintains a research database and runs a network called invoNET, which is a network of people working to build evidence, knowledge and learning about public involvement in the NHS, public health and social care research.

Joseph Rowntree Foundation

The Joseph Rowntree Foundation is one of the largest social policy research and development charities. Short summaries of the research that it has funded are freely available through the Findings series or as Acrobat pdf files.

National Centre for Independent Living (NCIL)

National Centre for Independent Living (NCIL) is a not for profit company controlled by people with disabilities offering information, training, expertise and policy development on all aspects of direct payments and independent living.

Neighbourhood Initiatives Foundation (NIF)

Neighbourhood Initiatives Foundation (NIF) is an organisation covering the United Kingdom specialising in community participation, training and development. Details of resources, publications and training can be accessed through the website.

PEANuT (Participatory Evaluation and Appraisal in Newcastle upon Tyne)

Participatory appraisal is a community-based approach to consultation that gives precedence to the views and attitudes of local people as experts within their own communities. The PEANuT website gives an introduction to the concept and gives details of training in participatory appraisal.

People First

Central England People First is a service user controlled rights-based organisation for people with learning difficulties. It offers training and consultancy and the website hosts various internet based mailing lists and online conference services. There are also links to other self advocacy organisations.


PhotoVoice aims to encourage the use of documentary photography by enabling those that have traditionally been the subject of such work to become its creator while simultaneously learning a new skill that can enhance their lives. Projects involving social care service users in the UK include work with people with learning difficulties, mental health service users, refugees and homeless people.

Sainsbury Centre for Mental Health

The Sainsbury Centre for Mental Health works to improve the quality of life for people with mental health problems by influencing policy and practice in mental health services. Details of events, resources, and publications are available on the website.

Service User Researchers

There are an increasing number of Service User Researchers.Examples include:

Service User Research Enterprise (SURE)

Service User research Enterprise (SURE) is an academic unit at the Institute of Psychiatry which produces both collaborative and user-led research into mental health issues. Older People Researching Social Issues (OPRSI)

Shaping Our Lives (see below)

Shaping Our Lives

Shaping Our Lives is an independent user controlled organisation. Details of its publications and projects are available on the website. The website includes the Shaping Our Lives guide to making meetings accessible.

Social Perspectives Network

The Social Perspectives Network is a coalition of mental health service users, carers, policy makers, academics, students, and practitioners interested in the social factors that contribute to people becoming distressed and play a part in promoting recovery. They hold study days, publish papers, campaign and provide information.

United Kingdom's Disabled People's Council (UKDPC)

The United Kingdom's Disabled People's Council (UKDPC) was set up by disabled people in 1981 to promote the full equality and participation of disabled people within society. The website gives news of campaigns, projects and also hosts a number of forums.

Valuing People Support Team

The Valuing People Support Team support people with learning disabilities and their families. It has links to resources and publications.

Wiltshire and Swindon Users Network

The Wiltshire and Swindon Users Network was founded in 1991 and exists to promote user involvement and to disseminate examples of good practice in user involvement in community care purchasing, provision and evaluation. The website includes a diary of events in the Wiltshire and Swindon areas, press cuttings, and a newsletter.