-
Go to the Contents of Part 1
References to Part 2
- Croft and Beresford 1990 From paternalism to participation: involving people in
social services Open Services Project/Joseph Rowntree Foundation
- Jon Glasby Community Care 5-11 October 2000
- Kate Allen Dementia Services Development Centre presentation 9.5.00
- Vittles P 'Researching the views of residents: can we have a debate please!' Local
Authorities Research and Intelligence Association (Laria) News 61 Sept 99 p3-8
- The Prevalence of Disability Among Adults OPCS Survey of Disability in Great Britain1998
HMSO
- Bynne and Parsons 'It Doesn't Get any Better: The Impact of poor basic skills on the
lives of 37 year olds' Basic Skills Agency 1997
- Listen Up! Effective community consultation Audit commission 2000
- Finding from the People's Panel research www.cabinet-office.gov.uk/servicefirst/
- Basic Skills Agency Survey, March 1998
- HSC 1998/168 Working Together - Securing a quality workforce for the NHS
- Department of Health 1999 www.doh.gov.uk/nhsexec/staffinv.htm
- Ross K 1995 'Speaking in Tongues: Involving Users in Day Care Services' British
Journal of Social Work 2 p791-804
- Mobilising the Social Model: Southern Derbyshire Strategy for Younger Disabled People
- an evaluation Centre for Research in Social Policy 1994
- Listen Up! Effective community consultation Audit Commission 2000 p21
- Farrell C & Gilbert H 1996 Health care Partnerships: debates and strategies for
increasing patient involvement in health care and health services. King's Fund
- McIver S 1993 Obtaining the views of Health Service Users about Quality of
Information King's Fund
- Changing Childbirth Part 1: Report of the expert Maternity Group Department of Health
HMSO 1993 p 49
- McIver S 1993 Obtaining the views of Health Service Users about Quality of
Information King's Fund
- Changing Childbirth Part II: Survey of Good Communications Practice in Maternity
Services Department of Health HMSO 1993
- 'You and your Services'- National Charter for people needing ongoing support or care
- Barr O 'Developing services for people with learning disabilities which actively involve
family members: a review of recent literature' Health & Social Care in the
Community 4(2) 1996 p103-112
- Better Care Higher Standards Department of Health 1999
- RNIB 1993 See it Right-new approaches to information for blind and partially sighted
people
- Deardoff 1986, Luker and Caress 1989 quoted in McIver 1993 as above
- Stanley and Tongue 1991 quoted in McIver S 1993 as above
- Help the Aged 1999
- PSS user experience survey guidance July 2000 www.doh.gov.uk/pssuser/index.htm
- National Consumer Council (undated) Asking your Users... How to improve services
through consulting your consumers HMSO
- Taylor A Community Care 25-31 May 2000 p 14
- Mc Iver S 1993 Obtaining The Views of Users of Health Services King's Fund Centre
- Richardson A in Sykes R & Hedges A (Eds) 1998 Panels and Juries - New government,
New Agenda? Social Research Association
- Nugent A 'getting from A to b: Objectives & methods in resident's research' Laria
News 59 Jan 99 p10-15
- Vittles P 'Researching the views of residents: can we have a debate please!' Laria
News 61 Sept 99 p
- Barnes M & Bennett Emslie G 1997 'If they would listen' an evaluation of the Fife
User Panels Age Concern Scotland
- Getting Ready for User-Focused Monitoring - A guide for mental health service
providers, users and purchasers. The Sainsbury Centre for Mental Health 1998
- CarpenterJ & Sbaraini S 1997 Choice, information and dignity: involving users and
carers in care management in mental health Policy Press Bristol
- Diana Rose et al 1998 In Our Experience - User -Focused monitoring of Mental health
Services in Kensington & Chelsea & Westminster Health Authority The Sainsbury
Centre for Mental Health
- Chambers P 'Involving Older women in the Research Process' Generations Review vol
8 no 4 December 1998
- McIver S 1994 Obtaining the Views of Black Users of Health Services King's Fund
- Listen Up! Effective community consultation Audit Commission 2000
- East Yorkshire Community Health Council Listening to Local Views on Healthcare Issues
1998
- Simons K 1995 Complaints procedures in social services departments JRF Findings
series
- Community participants' perspectives on involvement in area regeneration programmes
JRF findings series ref.770 July 2000
- Simons 1997 in Simons 1999 A Place at the Table? Involving people with learning
difficulties in purchasing and commissioning services British Institute of Learning
Disabilities Kidderminster p 20
- Ross K 'Speaking in Tongues: Involving Users in Day Care Services' British Journal of
Social Work 1995 2 p791-804
- Millner et al 1991 quoted in Barr O 'Developing services for people with learning
disabilities which actively involve family members: a review of recent literature', Health
& Social Care in the Community 4(2) 1996 p103-112
- Barker J et al 1997 Reference Manual for Public Involvement South Thames regional
Office
- Bond M 'Getting the views of users and potential Users' Research, Policy and Planning
vol 11 number1/2 pp 24-291994
- Jones C Participatory Appraisal Workshop Proceedings 1995 University of Hull
- Murray S 'Experiences with "rapid appraisal" in primary care: involving the
public in assessing health need, orientating staff, and educating medical students' British
Medical Journal 1999 318 p440-4
- Health Inequalities and Health Promotion a Snapshot East Riding and Hull Health
Authority 2000
- Department of Health 1998 In the Public Interest -developing a strategy for Public
participation in the NHS p 14
- Health Education Authority 1999 in Alexander A 1999 Study of Black, Asian and Ethnic
Minority Issues The Department of Health
- User Involvement in the control of voluntary organisations 1997 'findings' series
- Evaluation of the National User Involvement Project1999 Joseph Rowntree Foundation
- Killeen 1996 in Advocacy for Older People -The Northern Ireland experience
Central Council for Education and Training in Social Work 2000
- SSI/SWSG 1991b para 3.27 quoted in In Their Own Homes - Incorporating Carers' and
Users' Views in Care Management Social Policy Research Unit University of York 1993
- Thompson S undated User Involvement - Giving Older People a Voice Prospects
Training Publications Wrexham p 35
- Firth M and Kerfoot M 1997 Voices in Partnership-Involving users and carers in
commissioning and delivering mental health services The Health Advisory Service
The Stationery Office p20
- Royal Commission on Long-Term Care quoted in Atkinson 1999
- Atkinson D 1999 Advocacy - A Review Research into Practice series Joseph Rowntree
Foundation Pavillion Brighton
Other Resources for Part 2
General
Barker Jacqui et al 1997 Reference Manual for Public Involvement South
Thames Regional Office
» Described as 'a practical tool kit to provide detailed advice' on how to consult the
public effectively.
Barr, Drysdale & Henderson Towards Caring Communities Pavillion/JRF
» Training resource pack. "..to help staff initiate and implement community
involvement in service planning".
Beresford P and Harding T Eds 1993 A Challenge to Change - Practical experiences of
building user-led services National Institute for Social Work
» Provides examples of a broad range of initiatives and participants' experience.
Bradburn J et al 1999 Voices in Action: Training and Support for Lay Representatives
in the Health Service Royal College of Health
Croft S & Beresford P 1993 Getting involved: a practical manual Open
Services Project
Farrell C et al 1999 A New Era for Community Care? What people want from health,
housing and social care services King's Fund
Goss S & Miller C 1995 From Margins to Mainstream: developing user and carer
centred community care Joseph Rowntree Foundation
Harding T & Oldman H Involving service users and carers in local services -
guidelines for social services departments and others National Institute for Social
Work and Surrey Social Services
Kelson M 1997 User Involvement: A guide to developing effective user involvement
strategies in the NHS College of Health London
» Contains sections on why user involvement is important, who to involve, methods for
user involvement , checklist to help organisations evaluate their strategies. A good,
basic overview.
» The College of Health also provides training on user involvement tel. 020 8983 1225
Kemshall H & Littlechild R (eds) 2000 User Involvement and Participation in
Social Care
Jessica Kingsley www.jkp.com
Lindow V & Morris J 1995 Service user Involvement: Synthesis of findings and
experience in the field of community care JRF
Morris J 1997 Community care: working in partnership with service users Venture
Press Birmingham
Seargent J & Steele J 1998 Consulting the Public: Guidelines and Good Practice
Policy Studies Institute
Stevenson J 1999 Involving Older People in Health Developments Briefing Paper 4
King's Fund Rehabilitation Programme www.kingsfund.org.uk
» Clear and concise overview of 'user involvement', with general application beyond
sectors title suggests. Good summary of 'Key Health Policy Developments'
Wilcox David 1994 Participation Guide Partnership Books Brighton
Available online at www.partnerships.org.uk
» Project supported by Joseph Rowntree Foundation. Contains description of levels of
participation, framework for participation, glossary of terms, publication and
organisation resource lists.
Public Involvement Techniques Report - A Summary of Techniques North East
Lincolnshire Community Health Council 2000
Developing a Strategy for Public Involvement in Health within North Lincolnshire
North West Lincolnshire Community Health Council 2000
In the Public Interest -Developing a Strategy for Public Participation in the
NHS Department of Health 1998
» Report of expert group from the NHS Executive NHS Confederation The Institute of Health
service Management
Public Engagement Tool Kit 1999 NHS Executive Northern and Yorkshire produced
for Primary Care Groups in the Northern and Yorkshire region www.doh.gov.uk/nyro/
» A comprehensive guide to why and how.
A Guide to Community Involvement Leeds Involvement Project Leeds TUC Centre 88
North Street Leeds LS2 7PN
» A good 18 page overview
IDeA 1999 Who asked you? The Citizen's Perspective on Participation publications
catalogue http://www.idea.gov.uk/
» "Explores citizen and community views about their involvement with local
authorities on issues of local governance. Offering a critical assessment of the strengths
and difficulties in engaging with citizens and communities, from the community perspective
and based on this critique, guidance on good practice."
Patient and public involvement in the new NHS Department of Health 1999
Patient and public involvement in the New NHS -User empowerment - conference
held Feb 2000 copies of presentations available from liz@hmc.co.uk
Price £50
Building Bridges between people who use and people who provide services The
User-Centred Services Group National Institute for Social Work 1993 www.nisw.org.uk/pubs/building/bridtwo2.html
Directory of User Consultation Exercises in Hull & the east Riding of
Yorkshire North Bank Forum 2000
email volorgs@nbforum.demon.co.uk
Approaches - general
Sykes W et al 1992 Listening to Local Voices - A Guide to Research Methods
Nuffield Institute for Health Services Studies & Public Health Research & Resource
Centre
» Directed at managers with little research knowledge who are involved in commissioning
and managing research. Very brief summary of main issues, quantitative and qualitative
method, research process.
Winn Liz Ed1990 Power to the People -the key to responsive services in health and
social care King's Fund Centre London
» Chapters on: Consumerism and information, Empowering older users, Consultation forums
with carers, Involving people with learning difficulties in meetings, Community
development: working with black and ethnic minority groups, Citizen advocacy for people
with disabilities, Mental health self-advocacy, User group involvement.
www.pip.org.uk website of the Public
Involvement Programme, run by the Institute for Public Policy Research. Aims to:
- advise organisations wishing to involve the public in decision making
- provide a clearing house for exchange of information, ideas and practical experience
- develop criteria for assessing the effectiveness of different models
- promote good practice and innovation
- improve models of public involvement through practical experience, to ensure that they
are fair and representative and to build their credibility
» Section on models that meet 5 criteria: innovative, informed, deliberative,
independent, consult ordinary people.
Framework for Guidance on Public consultation, Indicators of Good Practice and
Minimum Standards presented at IPPR/ local government association seminar on public
consultation.
Information
Coulter A , Entwistle V Gilbert D 1998 Informing patients: an assessment of
the quality of patient information materials King's Fund
» Practical guidance on the development of information materials.
Duman & Farrel 2000 The POPPi Guide - Practicalities of producing patient
information King's Fund
» From project that devised criteria for quality information. Includes 'how to develop an
information policy'
Don't Panic: making the most of media interviews Local Government Information
Unit 1998
www.lgiu.gov.uk
The Centre for Health Information Quality was set up as part of the Patient
Partnership Strategy. It aims to ensure that information is:
- Clearly communicated
- Evidence based
- Involves patients throughout production
PiPER (Patient information projects exchange register) is a database of information
projects, with contact details.
PiPs ( Producing Information for patients) is a database containing literature on
developing good quality information and evaluating existing materials.
There is also an email discussion group for the exchange of information around quality
information for health service users. www.hfht.org/chiq
The Macmillan Directory of Information Materials for People with Cancer was
produced in collaboration with C.H.I.Q. www.chiq.org.uk/macmillan/
DISCERN online www.discern.org.uk
» A tool for assessing the quality of written information. Can be used for evaluating
existing information or producing new information.
www.information-society.org.uk
National Inventory Project: 'aim is to provide a source of good quality information about
current Information Technology (IT) and Information Society (IS) developments in central
and local government and in the private sector'
» Database of projects and initiatives listed by target audience, with health and local
government sections
The Plain English Campaign www.plainenglish.co.uk
will edit or test information
Surveys and Interviews
Stalker K et al 1999 If You Don't Ask You Don't Get Central Research Unit
Scottish Executive
» Qualitative study of views of people with learning difficulties and their carers about
health and social care services. Gives the 18 topic guides used for focus group work
Code of practice - how to effectively involve the public in written consultations Draft
code (out for consultation until July 2000) from
www.cabinetoffice.gov.uk/servicefirst/2000/consult/code/content.htm
» There are also plans to set up a web site register of consultation documents.
King's Fund Publications on user views and surveys
http://www.kingsfund.org.uk/ePublishing/html/publishing_main.html
Best Value and Audit Commission Performance Indicators for 2000/2001. Department of the
Environment, Transport and the Regions: http://www.local.detr.gov.uk/research/bvpi.htm
Volume 1 User Satisfaction Performance Indicators: Guidance on Methods of Data
Collection
» "The guidance concerns those indicators which involve user satisfaction
surveys. It aims to provide an overview of the different methods that can be followed for
the collection of data. As well as aiming to help authorities to meet the requirements set
out in the Order the guidance offers useful tips on how the User Satisfaction surveys can
be used by the authority to consult with the public on other issues which they perceive as
relevant to their authority."
The National Survey of NHS Patients in England www.doh.gov.uk/public/nhssurvey.htm
» This is a rolling program of large scale surveys looking at patient experiences in the
National Health Service. "The survey will enable local managers and health
professionals to take direct account of users' views in improving services. The survey
also provides data to inform the patient and user dimension of the Performance Assessment
Framework."
The first survey on primary health care focused upon general practice, and was published
in October 1999.
A second nationwide survey of patients treated for heart disease has been completed and
will be published Summer 2000. Includes information at Trust level.
Priority Search Ltd Sheffield Science Park Arundel Street Sheffield S1 2NS
Tel 0114 2701006 email priority@syspace.co.uk
» Priority Search is a process using computer software that allows analysis of responses
to open questions. The questionnaire is designed using group work to identify issues of
importance to the participants. Paired comparisons generated from the original
consultation allow respondents to rate responses on a visual scale. Priorities from the
whole population, or subgroups, can be derived from the way responses were ranked by
individuals.
North Derbyshire Health Authority used this method to identify women's priorities during
their review of maternity services. They report that the exercise, in which 721
questionnaires were completed and analysed, produced quick results, taking less than 3
months to complete
The Picker Institute www.picker.org
» An American non-profit organisation with a European arm.
Mission is to improve the quality of health care by incorporating the patient's
perspective into all decisions concerning the design and delivery of health care services.
Specialises in measuring patients' experiences of health care. Work with patients
to develop surveys that ask people what happened to them rather than for satisfaction
ratings. Eight 'dimensions of care' important to patients found through American and
European work.
Monthly Bulletin.
For recent work with Lothian University Hospitals Trust see Health Service Journal
11 May 2000 p24-26
Panels
Barnes M & Bennett Emslie G 1997 'If they would listen...' an evaluation
of the Fife User Panels Age Concern Scotland
Citizens' Panels; a new approach to community consultation Local Government
information Unit 1997 www.lgiu.gov.uk
Involving the Public/Communities
Burns D & Taylor M 2000 Auditing community participation: An assessment
handbook
The Policy Press for JRF
Harris J et al 1997: Developing a Whole Community Approach to Teenage Sexual Health
Participatory Appraisal in Hull East Riding Health Authority & University
of Hull
Pratt J et al 1999 Working Whole Systems King's Fund
Participation Works!- 21 techniques of community participation for the 21st
century (undated) New Economics Foundation www.neweconomics.org
» Short items written by practitioners of the technique, including description, case
study, resources needed and contacts/publications/training details. Includes 'Future
Search', 'Guided Visualisation', 'Planning for Real', 'Participatory Theatre'
Listen Up! - Effective community consultation Audit Commission 2000 www.audit-commission.gov.uk
Involving the Public Local Government Management Board 1998. See Improvement and
Development Agency publications http://www.idea.gov.uk/
» " a practical guide answering questions such as "What form of consultation
should I chose?" " How do I do it?" "How much does it cost?"
"Who else has done it?" Describes community profiling, future visioning,
surveys, area panels, user forums, citizens' panels. Citizens' juries, consensus
techniques and other approaches."
Involving Communities in Urban and Rural regeneration- A guide for practitioners
Department of the Environment 1995
» A comprehensive 'why and how' manual including techniques and practice examples.
Sections on defining communities, building partnerships, community involvement in design
and management of projects, capacity building, techniques for community involvement
Developing Effective Community Involvement Strategies - Guidance for Single
Regeneration Budget bids JRF March 1999 Findings no. 169
» Getting started, involving communities in partnerships, Creating strong local
organisations with their own assets, developing an infrastructure to build and sustain
community organisations, Monitoring Progress. Contains 'good practice' examples and lists
contacts.
Community Consultation: Spotlight on Best Value Series Local
Government Information Unit www.lgiu.gov.uk
Hull & East Yorkshire Participatory Appraisal Network E-mail pranet@tinyonline.co.uk
The Centre for Social Action Department of Social and Community Studies De Montfort
University Scraptoft Leicester LE7 9SU 0116 2577777
» 'A theory of community development based on the premise that change can happen, but
will only work if the people concerned own it and are involved in the changes they want.'
Facilitated groups following a 'what, why; how, action, reflection' process.
Citizens Involvement Support Centre M.E.L Research Ltd www.m-e-l.co.uk
Plain Talk www.aecf.org/publications/plaintalk/whatis.htm
» An American community based 4 year long initiative aimed at reducing sexual health
risks for young people. Strategies appropriate to individual communities developed through
community mapping, creating a residents' network, peer-led education and skills
development, community activities to disseminate key messages, developing sustained
involvement and leadership
www.cabinet.office.gov.uk/servicefirst/
» This website contains a Best Practice section.
Community Self-help Policy action team report 9: Social Exclusion Unit www.homeoffice.gov.uk/vcu/selfhelp.htm
» Remit to look at barriers to community activity in poor neighbourhoods and devise
action plan to improve. 7 principles for community empowerment .Recommendations include
community resource fund for small and emerging groups
Advocacy
Atkinson D 1999 Advocacy - A Review Research into Practice series
Joseph Rowntree Foundation Pavillion Brighton
» Atkinson carried out a review of the literature, visited advocacy projects, and
consulted key people and organisations to look at what advocacy is and what makes it work.
Bateman N 2000 Advocacy Skills for Health and Social care Professionals Jessica
Kingsley www.jkp.com
Booth W & Booth T 1998 Advocacy for Parents with Learning Difficulties:
Developing advocacy support Joseph Rowntree Research into Practice series Pavillion
Brighton
» Report and evaluation of 18 month Parents Together project. Describes experience of
advocacy support, strengths and limitations of advocacy as an approach, lessons for
practice learned. Good section on the many and various roles advocates take on.
Advocacy for Older People The Northern Ireland experience Central Council for
Education & Training in Social Work 2000
Forthcoming
Central Research Unit Listening to Communities: Evaluation of New Ways of
Testing Community Opinion www.scotland.gov.uk/cru/
Community Care Development Centre, King's College User Engagement Project
» DoH funding for 3 year project . The first stage aims to find and disseminate examples
of good practice in engaging with service users with learning disabilities. A database and
website are being developed. What it is that makes initiatives successful will be
analysed. From 2001 materials will be produced for service managers to help them put
research findings into practice.
Designing and using patient and staff questionnaires: a review of best practice
NHS R&D Health Technology Assessment Programme
Projects also underway on:
- Action Research: standards for judging its appropriateness
- The measurement of patient satisfaction
- What is the value of public participation in priority setting?
- Involving consumers in agenda setting for R&D for the NHS
» See www.ncchta.org
References to Part 2 (B)
- 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
» 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
» 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
Other resources to Part 2 (B)
Research, Monitoring and Evaluation
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
» 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
» 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
» Experience from 6 user-led research projects
Rhetoric into Reality Homeless Campaign Help the Aged 1999
» 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
» 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
» 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
» 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
» 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
» 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
» "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/
» Beginning to post public consultation surveys carried out by local authorities
British Sociological Association www.britsoc.org.uk
» 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
» 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
» 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.
» 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 .
-
Go to the Contents of Part 2
References and other resources for Part 3
Engaging with older people
- Thornton P Tozer R 1995 Having a say in change - older people and community care
Joseph Rowntree Foundation
- Older People Have Their Say - Report on research using the People's Panel www.cabinet-office.gov.uk/servicefirst/
- Alexander Z 1999 Study of Black, Asian and Ethnic Minority Issues Department of
Health
- Lindesay et al 1997 quoted in Alexander, as above
- South Humber Health Authority estimate based on 1996 population estimate
- Sheard D 1999 The empowerment and participation of service users in service
evaluation and development -Study for Coventry Health Authority
- South Humber Health Authority 1999 Assessing health and social needs of older people
in South Humber
- Quine S 1998 'Practical guidelines for organising and running focus groups with older
people' Generations Review vol 8 no 4 Dec 98
- Speaking Up for Our Age - Report from Help the Aged regional conferences 1999
- Blunden R undated Terms of Engagement - Engaging older people in the development of
community services King's Fund
- Thornton P Tozer R 1995 Having a say in change - older people and community care Joseph
Rowntree Foundation
- Raynes N 1995 Standard Setting in Residential and Nursing Homes University of
Huddersfield
- Patmore, Qurreshi & Nicholas 'Tuning in to Feedback' Community care 24-30 June 1999
reporting on DoH funded study in progress being undertaken by Social Policy Research Unit
University of York
- Goldsmith M 1996 Hearing the Voice of People with Dementia - Opportunities and
Obstacles Jessica Kingsley
- Kate Allen Research Fellow Dementia Services Development Centre, University of Stirling
in presentation at Mental Health for Older People- Needs and Services workshop Nuffield
Institute 9.5.00 www.stir.ac.uk/dsdc/
Other resources
Barnett E 2000 Including the Person with Dementia in Designing and Delivering Care
Jessica Kingsley www.jkp.com
Carter T & Beresford P 2000 Age and change: Models of involvement for older
people York Publishing
Henwood M et al 1998 Listening to Users of Domiciliary Care Services: Developing and
Monitoring Quality Standards Community care Division The Nuffield Institute for Health
Leeds
» The views of service users and carers were used to develop indicators against which the
quality of home care could be judged.
Qureshi H et al 2000 Outcomes in social care practice: developing an outcome focus
in care management and user surveys Social Policy Research Unit, University of York
» Summary available as Research Works bulletin www.york.ac.uk/inst/spru/pubs/research_works.htm
Qureshi H & Henwood M 2000 Older people's definitions of quality services
York Publishing
Stevenson J 1999 Involving Older People in Health Developments Briefing Paper 4
King's Fund Rehabilitation Programme www.kingsfund.org.uk
» Clear and concise overview of 'user involvement', with general application beyond
sectors title suggests. Good summary of 'Key Health Policy Developments'
Thornton P 2000 Older people speaking out: Developing opportunities for influence
York Publishing
Thornton P & Tozer R 1994 Involving Older People in Community Care Planning: A
Review of Initiatives Social Policy Research Unit university of York
» Describes voluntary sector, Community Health Council and community group initiatives,
some run jointly with the statutory sector.
Tozer R &Thornton P 1995 A Meeting of Minds -older people as research advisors
Social Policy Research Unit University of York
» Evaluation of using a group of older people to advise a research project.
Our Future Health -older people's priorities for health and social care, Health
and Older People Group (HOPe) Help the Aged 2000
» Written by a project group of older people, some of whom (including a Bridlington based
representative) were part of the Reference Group for the National Service Framework for
Older People. "These are OUR standards."
Consulting Consumers in the NHS: services for elderly people with dementia
living at home National Consumer Council 1990
» Chapter on: Measuring effectiveness: checklists, questionnaires and performance
indicators.
Involving Older People - Good Practice Guidance Age Concern England 2000
» Written for Age Concern groups, but has sections on 'Involving Older People from Black
and Minority Ethnic Groups', 'Involving Older Gay People', 'Involving Older People with
Mental Health Problems' 'Involving Older People with Learning Difficulties'.
Speaking up for our age - pack to support development of Older People's Forums
Help the Aged www.helptheaged.org.uk
Assessing health and social needs of older people in South Humber South Humber
Health Authority 1999
Primary Care Groups and Older People Project Community Care Programme www.kingsfund.org.uk
Dementia Services Development Centre www.stir.ac.uk/dsdc/
JRF Findings series www.jrf.org.uk e.g. involving
older people in community care planning
Better Government for Older People www.bettergovernmentforolderpeople.gov.uk
Older People Have Their Say- report on research using the People's Panel www.cabinet-office.gov.uk/servicefirst
Family Involvement in Homes Project, The Relatives & Residents Association 5
Tavistock Place London WC1H 9SN
Tel Julia Burton-Jones, development Officer 020 7692 4303
» Offers training and publications on running friends and relatives groups in nursing and
residential homes.
Engaging with Carers
- Arksey A Hepworth D & Qureshi H Carers' Needs and the Carers Act; An Evaluation
of the Process and Outcomes of Assessment Social Policy Research Unit University of
York
» A summary of this report is available as a Research Works bulletin www.york.ac.uk/inst/spru/pubs/research_works.htm
Other resources
Meethan K & Thompson C 1993 In their own homes: Incorporating carers' and users'
views in care management Social Policy research Unit University of York
Engaging with Black and other minority ethnic groups
- Alexander Z 1999 Study of Black, Asian and Ethnic Minority Issues Department of
Health
- Alexander Z 1999 as above
- Alexander Z 1999 as above
- McIver S 1991 Obtaining the Views of Black Users of Health Services King's Fund
p18
- Bowling 1992
- Ahmad 1990 in McIver S 1994 as above
- Swarup 1993 in McIver S 1994 as above
- Jowell Larrier and Lawrence 1990 in McIver1994 as above
- Johnson M 1996 Ethnic minorities, Health and Communication Research Paper in
ethnic Relations no 24 Centre for Research in Ethnic Relations University of Warwick
- Health Education Authority 1995
Other Resources
Hughes A 'Strategies for sampling black and minority ethnic populations' Journal of
Public Health Medicine 1995 17 (2) 187-192
Presley F & Shaw A 1995 Race and Health: an information sources guide Kings
Fund
The Refugee Council Information Service 020 7820 3042
Engaging more effectively with people using mental health services
- National Service Framework for Mental Health Department of Health 1999 p46
- The Impact of Mental Health User Involvement Research Policy and Planning (1997)
vol15 No 2 p26-30
- McIver S 1991 Obtaining the views of Users of Mental Health Services King's
Fund Centre
- Rose Diana et al 1998 In our Experience: User-Focused monitoring of Mental health
Services in Kensington & Chelsea & Westminster Health Authority The Sainsbury
Centre for Mental Health
- National Service Framework for Mental Health p43
- McIver S 1999 'So you think you know it all?' Health Service Journal vol 109 no
5672 16.9.99 p22-23
- Morgan H 1998 'A Potential for Partnership: Consulting with users of mental health
services' in Foster et al Eds Managing Mental Health in the Community: Chaos and
Containment Routledge pp177-187
Other resources
Barnes Mort & Shardlow 1999 Unequal Partners - User Groups and Community
Care The Policy Press Bristol
» Study which analyses the relationship of mental health and physical disability user
groups to policy. Perceptions of user group and agency of their roles.
Bowl R 'Involving service users in mental health services' Journal of Mental Health vol
5 (3) July 1996 p287-303
» Report on two research studies
Carpenter J and Sbaraini S 1997 Choice, Information and Dignity- Involving users and
carers in care management in mental health. The Policy Press Bristol, in association
with the Joseph Rowntree Foundation and Community Care
» Report describing development and evaluation of a project designed to involve mental
health service users at an individual level in the care management process.
Leader A & Crosby K 1998 Power Tools Pavillion
» "Looks at how advocacy services can develop practical models of good
practice"
Leader A 1995 Direct Power Pavillion
» "Tool for social and health care professionals who need to support and empower
clients preparing for care assessments, discharge and aftercare arrangements, and in
redeveloping care plans which are relevant to clients' needs".
Getting Ready for User-Focused Monitoring A guide for Mental Health Service
Providers, Users and Purchasers The Sainsbury Centre for Mental Health 1998
www.sainsburycentre.org.uk
Thompson K et al (Eds) 1997 Mental Health Service Development Skills Workbook
The Sainsbury Centre for Mental Health
Firth & Kerfoot 1997 Voices in Partnership - involving users and carers in
commissioning and delivering mental health services NHS Health Advisory Service
Thematic Review The Stationary Office
'The Impact of Mental Health User Involvement' Research and Policy Planning vol
15 no.2 Social Services research Group 1997
» From 1997 workshop 'Citizens, Consumers or Users?'
East Yorkshire Monitoring Team 1997 Monitoring Our Services Ourselves
» Practical manual and audiotape for mental health user groups and service providers
Joseph Rowntree Foundation Findings series
» Evaluated initiatives e.g. Involving users and carers in the care programme approach in
mental health www.jrf.org.uk
Mental Health Foundation website http://www.mentalhealth.org.uk/rsngui1.htmtransfer
Engaging with those who do not communicate conventionally
- Morris J 1997 Community care: working in partnership with service users Venture
Press Birmingham
- Shaddock A et al 1998 'Communicating with people with an intellectual disability in
Guardianship Board hearings: an exploratory study' Journal of Intellectual and
Developmental Disability vol23 no 4 p279-293
Other resources
Fitton Pat 1994 Listen To Me: Communicating the needs of people with profound
intellectual and multiple disabilities Jessica Kingsley London
» Written by a parent for other parents. Describes the 'care book' illustrated with
photos developed by the author to communicate to others her daughter Kathy's needs. This
included a section describing the way in which Kathy communicated with sounds, facial
expressions and body movements so that her pleasure, approval or disapproval could be
recognised.
Engaging with people who have a learning difficulty
- People First newsletter quoted in Morris J 1997 Community care: working in
partnership with service users Venture Press Birmingham
- Flynn M 'Involving users at all levels' in Billingham K et al1999 Eds Making a world
of difference: developing primary health care Royal College of General Practitioners
p20
- Simons K 1999 A Place at the Table? Involving people with learning difficulties
in purchasing and commissioning services British Institute of Learning Disabilities
Kidderminster
- Nocon N & Qureshi H 1996 Outcomes of Community care for Users and Carers Open
University Press
- Weston C 1999 'Speaking up for Yourself: Description and evaluation of an Assertiveness
Training Group for people with learning disabilities' British Journal of Learning
Disabilities vol 27 p110-115
- Whittaker A in Winn Liz Ed1990 Power to the People -the key to responsive services in
health and social care King's Fund Centre London
- Whitaker as above
- Flynn M 'Involving users at all levels' in Billingham K et al1999 (Eds) Making a
world of difference: developing primary health care Royal College of General
Practitioners
- Wintersgill C 1996 What would make services good? Quality standards in services for
people with learning disabilities- a user perspective. Research summary for the Leeds
Coalition September
- Involving people with learning difficulties in staff recruitment JRF Findings
series 1996
Other resources
Booth W & Booth T 1998 Advocacy for Parents with Learning Difficulties: Developing
advocacy support Joseph Rowntree Research into Practice series Pavillion Brighton
» Report and evaluation of 18 month Parents Together project. Describes experience of
advocacy support, strengths and limitations of advocacy as an approach, lessons for
practice learned. Good section on the many and various roles advocates take on.
Caldwell P 1996 Getting in Touch - ways of working with people with severe learning
disabilities and extensive support needs JRF Research into Practice series Pavillion
Brighton
» Uses case studies to describe ways of engaging the attention of and communicating with,
people with profound disabilities by finding the key to their own 'language' which might
be through sound, vibration, or touch.
Stalker K et al 1999 If You Don't Ask You Don't Get Central Research Unit
Scottish Executive
» Qualitative study of views of people with learning difficulties and their carers about
health and social care services. Gives the 18 topic guides used for focus group work
CHANGE Picture bank
» Pack to increase accessibility of information, reviewed in Community Care 5-11
October 2000 p 38
The Quest System
» 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
People First
» Groups run and controlled by people with learning difficulties to speak up for
themselves. website www.peoplefirst.org.uk
Norah Fry Research Centre University of Bristol: http://www.bristol.ac.uk/Depts/NorahFry/
British Institute of Learning Disabilities www.bild.org.uk
» Research, resources and publications, newsletter, education and training
Engaging with disabled people
-
- for example, Listening to Families The East Riding of Yorkshire
- Fletcher S 1995 Evaluating Community Care: A guide to evaluations led by disabled
people King's Fund
-
Other resources
Living Options in Practice 1992 Project Paper no. 3 Achieving User Participation
-Planning Services for People with Severe Physical and Sensory Disabilities
» A guide to the process of involving disabled people as partners in service planning and
development, based on the experience of eight Practice Localities in England.
Engaging with people with a sensory impairment
- RNIB 1993 See it Right-new approaches to information for blind and
partially sighted people
» a guide to producing information in a format suitable for people with a visual
impairment.
- Hicks G Making Contact - A good practice guide: how to involve and communicate with a
Deafblind person Sense
» Detailed guidance on: communicating directly, methods of communication, good
practice in communication, contact through an interpreter, consulting with Deafblind
people, meetings and conferences, code of practice for meetings involving Deafblind
people, Braille and large print information.
- British Deaf Association & JRF Deaf people's participation in local services
Social Care Research 77 1996
Other Resources
Stepping away from the Edge Department of Health 2000
» Improving services for deaf and hard of hearing people
www.doh.gov.uk/scg/steppingaway.htm
Engaging with people who misuse substances
- Tackling Drugs Together 1995
- Jones M et al 'Asking around: the theory and practice of user consultation' Drug Link
March/April 1998 p14-17 report from apa 67-69 Cowcross Street London EC1M 6BP
- Surrey Alcohol and Drug Service Users' Forum 1995 Who Knows Best? Developing User
Involvement in Substance Misuse Services Time is Right Publications Surrey
» " This booklet outlines the process undertaken in Surrey to generate service
user involvement in the alcohol and drugs field. It outlines the problems encountered not
only in setting up a user consultation facility- but in ensuring its ongoing
effectiveness. It is not a guide on 'how to get it right', but rather an honest
description of the struggles we went through and the innovative solutions we
developed."
Other resources
Task Force to Review Services to Drug Misusers: Report of an Independent Review of
Drug treatment Services in England DoH 1996
» Chapter on 'meeting service users' needs'
Engaging with people who use
primary and community health services
- McIver S 1993 Obtaining the views of users of primary and community health care
services King's Fund
Other Resources
National Primary Care Research and Development Centre www.npcrdc.man.ac.uk/
» Produce a newsletter
Working for Health: Primary Care Groups and the Community Primary Care
Development Team University of Hull
» Report from 1999 conference
Go to the Contents of Part 3
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