References part 2b

References and Other Resources to Part 2 (B)

References

Calnan M 'Towards a Conceptual Framework of Lay Evaluation of Health Care' Social Science in Medicine 1998 Vol 27 no 9 p927-933
Warren L in Barnes & Warren (Eds) Paths to Empowerment The Policy Press Bristol 1999
From Professor Gordon Grant, speaking January 2000
Involving Consumers in Research and Development in the NHS: Briefing Notes for Researchers Consumers in NHS Research Support Unit 2000
ť Includes checklist on budgeting for involvement and draft job description for people involved
Lindow V & Morris J Service User Involvement - Synthesis of Findings and Experience in the Field of Community Care Joseph Rowntree Foundation 1995
Beresford P Researching Citizen-Involvement: A Collaborative or Colonising Enterprise? 1992, in Barnes M & Wistow G (Eds) Researching User Involvement Nuffield Institute for Health, University of Leeds p23
Beresford P 1992 as above
Tozer R & Thornton P A Meeting of Minds: Older people as Research Advisors Social Policy Research Unit, University of York 1995
ť Evaluation of a group set up to advise a research project
Ramon S 'Participative Mental Health Research: Users and Professional Researchers Working Together' Mental Health Care March 2000 31 (7)
Strategies for Living: A Report of User-Led Research into People's Strategies for Living with Mental Distress Mental Health Foundation 2000
Monitoring our Services ourselves: A Practical Manual & Audiotape for Mental Health User Groups and Mental Health Services The East Yorkshire Monitoring Team 1997
McClelland F 'Monitoring our Services ourselves' Mental Health Care April 1998 vol1 no 8
Nocan A & Qureshi H Outcomes of Community Care for Users and Carers Open University Press Buckingham 1996
Tozer R & Thornton P A Meeting of Minds: Older people as Research Advisors Social Policy Research Unit, University of York 1995
Bamford C et al Overview: Outcomes of Social Care for Younger Disabled People and Carers Social Policy Research Unit, University of York 1998
Qureshi H et al Overview: Outcomes of Social Care for Older People and their Carers Social Policy Research Unit, University of York 1998
Moore 1995, quoted in Barnes & Warren (Eds) Paths to Empowerment The Policy Press Bristol 1999 p135
Townsley R & Macadam M Involving People with Learning Difficulties Social Care Research 91 Joseph Rowntree Findings Series 1996 www.jrf.org.uk

Barnes M & Warren L (Eds)1999 Paths to Empowerment The Policy Press Bristol

Finch J & Orrell M 'Involving Users and Carers in developing Standards for Mental Health Services for Older people' Managing Community Care vol7 no. 6 Dec 1999

Kirby K 1999 Involving young researchers how to enable young people to design and conduct research Joseph Rowntree Foundation

Raynes N 'Involving residents in quality specification' Ageing and Society vol 18 part 1 Jan 1998

Rose D et al 1998 In our experience: user focused monitoring of mental health services Sainsbury Centre for Mental Health

Townsley R & Gyde K Plain Facts: Information about Research for People with Learning Difficulties
ť In 1996 the Plain Facts magazine for adults with learning difficulties was launched and distributed free to user-led groups across the UK. This report includes copies of the first 8 issues of Plain Facts and a concise guide to writing Plain Facts E-mail samplecopy@powpub.com

Turner M 1998 Shaping Our Lives Project Report NISW
ť Research with service users and user groups on their views on outcomes and service quality and the ways in which they were seeking to define the outcomes they wanted for themselves

Ward L Seen and Hear: Involving disabled children and young people in research and development projects York Publishing

Our Voice in Our Future: part of the Shaping Our Lives Project. Users produced three booklets:

Services and support
Benefits
Mental health services

to give background information and encourage users to discuss and put forward their views. Free to service users

The Outcomes We Want: Statement on User Defined Outcomes -Shaping Our Lives National User Group www.nisw.org

A DIY Guide to Survivor-led Research Mental Health Foundation 1999
ť Experience from 6 user-led research projects

Rhetoric into Reality Homeless Campaign Help the Aged 1999
ť Through three pilot projects working with older homeless people, Help the Aged defined an action research process to be used in projects funded by the organisation

Involving Older people in Planning and Evaluating Community Care: A Review of Initiatives 1994 Social Policy Research Unit University of York
ť Describes voluntary sector, Community Health Council and community group initiatives, some run jointly with the statutory sector.

Research Policy and Planning vol 12 no 2 1994 Social Services Research Group
ť Special issue on researching service user views and working with particular client groups

The Forum for Collaboration with Users in Research (Folk.us) University of Exeter www.exeter.ac.uk

Mental Health Foundation web site www.mentalhealth.org.uk/rsnulr1htm
ť Has an index of user-led research texts and user-led research update

Consumers in NHS Research Support Unit, Help for Health Trust. Quarterly Newsletter.
Publications downloadable from www.hfht.org/ConsumersinNHSResearch/pub.htm

Research: What's in it for Consumers? (NHS Executive 1998)
Involving Consumers in Research & Development in the NHS: Briefing Notes for Researchers
Involving consumers in commissioning health research

Outcomes of Social Care for Adults (OSCA) programme
ť Department of Health funded research co-ordinated by Gerald Wistow at the Nuffield Institute for Health University of Leeds "The purpose of this initiative is to deliver research evidence which can inform the planning, commissioning and delivery of services which are valued and cost effective, and which promote better outcomes for users and carers".

The Quest System
ť A system to enable the evaluation of services for people who need long-term support that can be used by service users themselves. Developed and tested by the Quest Team based at the University of Hull. There is a version to assist people who find it difficult to read and to speak.
The East Yorkshire Learning Disability Institute University of Hull HU6 7RX

Participatory Inquiry And Action In Social Practice
www.cam.anglia.ac.uk/sphs/piasp/index.html
ť "Action research network for practitioners, service-users, carers, managers and researchers involved in improving services in social care and work, community work, health and education"

Consumer Involvement in the Health Technology Assessment Programme www.hta.nhsweb.nhs.uk/consumer.htm

Social Policy Research Unit Outcomes Programme - research findings summarised in monthly Research Works www.york.ac.uk/inst/spru/pubs/research_works.htm

Social Services Research Group site http://www.ssrg.demon.co.uk/
ť Beginning to post public consultation surveys carried out by local authorities

British Sociological Association www.britsoc.org.uk
ť Good Statement of Ethical Practice as well as 'How is Sociological Research Conducted?' and guidelines on non- disablist and anti-sexist language

Social Research Association Ethical guidelines www.the-sra.org.uk/index2.htm

Department of Health Research & Development www.doh.gov.uk/research/index.htm
ť Includes Research Findings Register

Staff selection and training

Lindow V 1996 User Involvement: Community Service Users as consultants and trainers Department of Health NHS Executive Community Care Branch

Townsley Howarth Le Grys & Macadam Getting Involved in Choosing Staff Pavillion in association with The Norah Fry Research Centre & JRF
ť Pack designed to guide people with learning difficulties through the process for appointing staff.

Community Service Users as Consultants and Trainers Department of Health 1996
Available in large print, Braille and on tape.
ť Produced by the National User Involvement Project as a resource for service users.
Includes information on acting as a consultant and running training events

There is a National Institute of Adult Continuing Education training pack for learning disabled people to become trainers, accredited by the Open College Network .