References part 2

References and Other Resources 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

General

Barker Jacqui et al 1997 Reference Manual for Public Involvement South Thames Regional Office
ť 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
ť 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
ť 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
ť 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.
ť 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
ť 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
ť 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
ť 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/
ť A comprehensive guide to why and how.

A Guide to Community Involvement Leeds Involvement Project Leeds TUC Centre 88 North Street Leeds LS2 7PN
ť A good 18 page overview

IDeA 1999 Who asked you? The Citizen's Perspective on Participation publications catalogue http://www.idea.gov.uk/
ť "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 Ł50

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
ť 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
ť 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

ť 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
ť Practical guidance on the development of information materials.

Duman & Farrel 2000 The POPPi Guide - Practicalities of producing patient information King's Fund
ť 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
ť 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'
ť 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
ť 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
ť 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
ť "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
ť 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
ť 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
ť 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 21^st century (undated) New Economics Foundation www.neweconomics.org
ť 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/
ť " 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
ť 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
ť 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
ť '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
ť 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/
ť 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
ť 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
ť 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
ť 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
ť 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

ť See www.ncchta.org