User empowerment 7

Further information

Other relevant articles

"Distress and Disability" Are users of mental health services 'disabled'? Liz Sayce, Openmind 89, 1998.

'Raw creation: Outsider art and beyond' Michelle Roberts on the art that came out of the asylum writing in: Openmind 82, Nov/Dec 1996.

'User Involvement in mental health nursing practice: rhetoric or reality?' M J Rudman writing in: Journal of Psychiatric and Mental Health Nursing - 3, 1996. Includes some history of the user movement.

'Users' Movement and the Challenge to Psychiatrists' Mark Cohen writing in: Psychiatric Bulletin 22, 1998.

Relevant national organisations, networks and groups

User/Survivor Groups

ACUSF - African Caribbean Users/Survivors Forum, 332 Brixton Road, London, SW9
National network for African and Caribbean users and survivors of the mental health system. Advice and support for users, survivors and families.

Hearing Voices Network, C/o Creative Support, 5th Floor, Dale House, 35 Dale Street, Manchester, M1 2HF. Tel and Fax: 0161 228 3896

Mind Link - Mind's consultation/contact network, Mind, Granta House, 15-19 Broadway, Stratford, London, E15 4BQ. Tel: 020 8519 2122 Fax: 020 8522 1725

National Self Harm Network, PO Box 16190, London, NW1 3WW.
Campaigns for rights and understanding of self-harm. Aims to promote survivor perspectives on self-harm.

Survivors Speak Out (SSO), 34 Osnaburgh Street, London, NW1 3ND. Tel: 020 7916 5472
For information on Advance Directives, Living Wills and Crisis Cards.

Survivors Poetry (address as for SSO), Tel: 020 7916 5317 Fax: 020 7916 0830
Survivors Poetry exists to give a voice to survivors of the mental health system through workshops and performances of poetry. All activities are run by survivors for survivors. Aims to support survivors in the development of their creativity through poetry.

Voices (Service users network of the National Schizophrenia Fellowship), 28 Castle Street, Kingston-upon-Thames, Surrey, KT6 4NS.

SUN, The Scottish Users' Network, Firs Park,Firs Street, Falkirk, FK 2 7AY. Tel and Fax: 01324 632869

US - All Wales User Network, Suite 3, 1 North Parade, Aberystwyth, SY23 2JH. Tel: 01970 626230 Fax: 01970 626233

International Groups

European Network, European Desk, PO Box 645, 3500 A P Utrecht, The Netherlands Tel: +31 30 254 1808 Fax: +31 30 254 1157

Support Coalition International,  454 Williamette Street, Suite 216, PO Box 11284, Eugene, Oregon, 97440-3484, USA.

International Mental Health Network, 71 Fentham Road, Erdington, Birmingham, B23 6AL. Tel: 0121 623 5875 Fax: 0121 623 5878

World Network, C/o Helen Connor, PO Box 222, Cooparoo, Queensland 4151, Australia.

Groups Specific to Particular Treatments

ECT Anonymous (User led), 14 Western Avenue, Riddlesden, Keighley, Bradford, BD20 5DJ. Tel: 01535 661493 Fax: 01535 602736

Prozac Support Group, 51 Kenneth Street, Inverness, Scotland, IV3 5PZ. Tel: 01463 230392

Media Pressure Groups

Headlines (User led), Mental Health Media, 356 Holloway Road, London, N7 6PA.
Services for user/survivor groups including training, support and advice on making complaints about the media as well as media relations and publicity services. Covers all England and Wales.

Media Watch, C/o Mental Health Foundation, 37 Mortimer Street, London, W1N 8JU. Tel: 020 7580 0145 Fax: 020 7631 3868 Email: mhf@mentalhealth.org.uk
Six mental health charities including Mind aiming to monitor media coverage, challenge poor portrayals and bad use of language and make constructive comments on story lines.

National Advocacy Projects

CHOICE - Advocacy, Consultancy and Training, Hyde House, The Hyde, London, NW9 6JT.
Provide consultancy, training and support around advocacy and user involvement. Charges are made for consultancy and training.

UKAN - United Kingdom Advocacy Network (User led), Volserve House, 14-18 West Bar Green, Sheffield, S1 2DA. Tel, fax and textphone: 0114 272 8171

Federation of Patients Councils, advocacy projects and user forums. Compile lists of mental health advocacy services including local self-advocacy projects. Actively promote user involvement in choosing, monitoring and running of mental health services.

Groups Specific to Secure Hospitals

SUSAC, Service Users' Standing Advisory Committee (User led), HSPSCB, Room 036, NHS Executive, 40 Eastbourne Terrace, Paddington, London, W2 3QR. Tel: 020 7725 5604 Fax: 020 7725 5514
SUSAC Co-ordinator: 020 7725 5463

WISH - Women in Secure Hospitals, 15 Great Street, Thomas Apostle, London, EC4V 2BJ. Tel: 020 7329 2415 Fax: 020 7329 2416
Works on behalf of women in or released from special hospital, regional secure units and prison psychiatric units. Provides direct services that empower women to speak on their own behalf. Reviews and seeks reform of psychiatric provision for women at risk of secure containment.

Research

King's Fund, 11-13 Cavendish Square, London, W1M 0AN. Tel: 020 7307 2400 Fax: 020 7307 2801 Email: A.Bell@kehf.org.uk
Funding and information for health/mental health projects. Involved in the Working Together Project along with The Sainsbury Centre.

The Sainsbury Centre for Mental Health, 134-138 Borough High Street, London, SE1 1LB. Tel: 020 7403 8790 Fax: 020 7403 9482

The Mental Health Quality Assurance Network (QA Network), Based at and sponsored by the Sainsbury Centre for Mental Health, produces Q-Net a six monthly newsletter about user involvement.

Other sources of information

Manic Depression Fellowship, 8-10 High Street, Kingston-upon-Thames, Surrey, KT1 1EY. Tel: 020 8974 6550. Fax: 020 8974 6600
Mental health charity with local branches around the country offering self-help for those with manic depression.
Telephone line open 9-5 Mon-Fri: 020 8974 6550.

Mind Information Unit, Mind, Granta House, 15-19 Broadway, Stratford, London, E15 4BQ. MindinfoLine: 0845 7660 163.

National Association for Patient Participation (NAPP), www.napp.org.uk Promotes patient participation in primary care at local GP surgeries and health centres. Practical advice and information on how to start and maintain patient groups. Currently involved in promoting PPG's (Patient Participation Groups) as an essential part of PCG's (Primary Care Groups) in the community.

Further relevant information

Factsheets

Advance Directives
Attitudes
A Resource List of Mental Health Literature in Translation
Crisis Services
Employment
Holidays
Wales, Mental Health Resources in Wales

Brief guides

Hearing Voices
Good Practice in User Employment
Positive About Mental Health: Ten Tips for Employers.

Booklets

Mind guide to advocacy.

Other titles in the same series; physical activity, yoga, managing stress, food and mood and surviving working life.

Legal rights guides:

A series of Rights Guides covering such topics as civil admission to hospital and consent to treatment.

User perspectives

Accepting Voices, Eds. Prof. Marius Romme and Sandra Escher, Mind 1993.

Thirteen people describe their experiences. Focuses on techniques to deal with voices, emphasising that personal growth should be stimulated rather than inhibited.

Experiencing Psychiatry: Users' Views of Services, Anne Rogers, David Pilgrim and Ron Lacey, Mind/MacMillan 1993.

This book describes the experiences and views of people who use mental health services. It is a unique document which should be read by anyone in mental health services.

Madness in it's place: Narratives of Severalls Hospital 1913-1997, Diana Gittins, Routledge 1998.

Draws on the life stories of patients and workers at a large psychiatric hospital to present an extraordinary social history of psychiatric care in the twentieth century.

Out of Mind Out of Sight, Ed. Joan Thorton, Yorkshire Art Circus 1996.

This book is a collection of interviews with a number of people who are, or have been, experiencing extreme forms of mental distress. In their own words they describe their lives, their experiences.

Phone at Nine Just to Say You're Alive, Linda Hart, Douglas Elliot Press 1995.

This autobiographical account of one woman's experience of the psychiatric system inspires and challenges perceptions of mental illness and will be of great value to users, professionals or carers.

Politics of the Madhouse - Lobotomy, ECT, Seclusion, Empowerment and Community Care Ron Coleman, Handsell Publishing 1998.

Critique of the political issues that surround the field of mental health and community care by an ex-service user.

Psychiatric Drugs, Users' Experiences and Current Policy and Practice, Peter Campbell, Alison Cobb and Katherine Darton, Mind 1998.

Raised Voices, Melba Wilson and Joy Francis, Mind 1997.

A report examining the African-Caribbean and African Users' views and experiences of mental health services in England and Wales.

Schizophrenia: The Positive Perspective - In Search of Dignity for Schizophrenic People, Peter Chadwick, Routledge 1997.

Self-Harm: Perspectives from Personal Experience, Ed. Louise Pembroke, Survivors Speak Out 1994.

Speaking Our Minds: An Anthology, Jim Read and Jill Reynolds, MacMillan 1996.

Collection of writing by over fifty people who have experienced mental distress.

Poetry

Beyond Bedlam, Eds. Ken Smith and Matthew Sweeney, Anvil Press 1997.

Beyond Bedlam - A Commemorative Anthology of Poetry, Bethlem and Maudsley NHS Trust 1997.

Sweet, Sour and Serious - An Illustrated Anthology, Survivors Poetry Scotland, Survivors Press Scotland, 1996.

Under the Asylum Tree: Survivors Poetry. Survivors Speak Out 1995.

An illustrated anthology of the work of 95 survivor poets and visual artists.

Becoming involved as a user

Direct Power, Alan Leader, CSN/BCS/Mind/Pavilion 1995.

Written by service users for people who want to develop their own care plans and support networks.

Survivors and Users and Employment

A Survivor's Guide to Working in Mental Health Services, Susan Rooke-Matthews and Vivien Lindow, Mind 1998.

Booklet which outlines the difficulties and challenges facing user workers, details recent changes in practice and policy, gives good practice recommendations for employers and lists professional schemes and sources of support for user workers.

Advocacy

Guidelines on Advocacy for Mental Health Workers, Jim Read and Jan Wallcroft, Mind/Unison 1995.

Self management

Inside Out - A Guide to Self Management of Manic Depression, Manic Depression Fellowship, 1995.

The Voice Inside - A Practical Guide to Coping with Hearing Voices, Paul Baker, Handsell Publishing/Mind 1997.

Working With Voices, Ron Coleman and Mike Smith, Handsell 1997.

Involving users

Changing Practice - Mental Health Nursing and User Empowerment, Peter Campbell and Vivien Lindow, Mind/RCN 1997.

Choice, Information and Dignity - Involving Users and Carers in Care Management in Mental Health, John Carpenter and Silvia Sharaini, The Policy Press 1997.

Describes the development and evaluation of an integrated approach to care management and programming which took seriously the aspiration to empower users and carers.

Dancing With Angels, David Crepaz-Keay, Chris Binns and Evelyn Wilson, 1997.

Focuses on survivor involvement in training and continuing professional development.

Giving Users a Voice? West Midlands Mind Regional Office, NHS Executive and East Birmingham Community Health Council.

User involvement tool.

Guidelines on Equal Opportunities and Mental Health, Jan Wallcroft and Jim Read, Mind/Unison 1995.

Poses a challenge to mental health services: to put people's differences, and the power imbalances between them at the centre of mental health work. This booklet is written by survivors of the mental health system and provides the guidelines and ideas necessary for taking up the challenge.

Obtaining the Views of Users of Mental Health Services, Shirley McIver, King's Fund 1992.

A practical guide to enabling care professionals to decide from whom they want to get feedback and why, how to do it and how to ensure that service developments occur as a result.

Publications not available from Mind

Advocacy, A Code of Practice, Edna Conlan and Tony Day (Eds.)

Can be obtained free from UKAN (in single copies) or from the Department of Health (multiple copies):

Department of Health, PO Box 410, Wetherby, LS23 7LN. Tel: 0800 555 777

Stopovers on My Way Home from Mars, Mary O'Hagan, Survivors Speak Out

Available to survivors at a reduced cost from SSO (address as above). This is a survivor's reflective journey through her experiences in the mental health system and a journey into the psychiatric survivor movement in the USA, Britain and the Netherlands.

In Our Experience: User Focused Monitoring in Mental Health, D Rose, P Lindley, R Ford and L Gawith, Sainsbury Centre for Mental Health 1998. A report on the first UFM project.

Getting Ready for User Focused Monitoring (UFM), A Guide for Mental Health Service Providers, Users and Purchasers, Sainsbury Centre for Mental Health 1998.

Both of the above are available from the Sainsbury Centre.

Knowing Our Own Minds, Alison Faulkner, 1997

A survey of how people in emotional distress take control of their lives.

User/Survivor Empowerment Pack collated and updated May 2001.

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