Mind celebrates 60 years of speaking out

Posted Thursday 27 April 2006

60th anniversary April 2006 to March 2007:Voice of the service user

Today, Mind launches its 60th anniversary year. It will focus on the 'Voice of the service user', aiming to empower people with mental health problems speak out on all issues that affect their lives and be actively involved in the development of their care and services. Currently, this too often seems to be merely 'tokenist' involvement: eg. National Service Framework for Mental Health did not give any specifications of how service users should be involved; and Care Programme Approach (needs assessment/care plan supposed to be agreed jointly between a person and their mental health care provider) often only pays lip-service to service user involvement. Mind will continue to support people with experience of mental distress to speak out against the stigma and discrimination they face in society, addressing issues such as employment, benefits and social exclusion.     

We launch an updated resource pack on the mental health service user/survivor movement by Peter Campbell, and UK's leading agony aunt Claire Rayner's book Moving on from depression. Both Claire and her husband have experienced episodes of depression throughout their lives.

Events taking place will include:

• Arts installation project - run by service user Peter Beresford, this will be a national roving exhibition used to challenge and develop wider public and political understanding of mental distress
• Service user conference - takes place on 6-7 September 2006, celebrating the last 21 years of user involvement and campaigning action, setting the agenda for the future
• Mind week (13 to 20 May) - launches report Out of the blue? Motherhood and depression revealing women's experience of a shocking lack of treatments and services available for perinatal illness
• Support project - Mind will support service users to acquire knowledge and skills so that their involvement can be effective
• There will also be projects to help 'forgotten voices' - people with mental health problems from marginalised groups eg. prisons, asylum seekers, refugees.

Service user voice

Despite major changes to improve service user rights over the last 60 years, people with mental health problems remain a fundamentally powerless group - two major contributory factors being poverty and discrimination. The Disability Discrimination Act, Human Rights Act and National Service Framework for Mental Health have all been steps in a better direction - but there is still much to be done. 

Care Programme Approach - last year, a Healthcare Commission survey found that almost 25 per cent of people had not been involved in deciding what was in their care plan and over 50 per cent had not had their care plan reviewed in the last six months. Fifty nine per cent had not been given or offered a written copy of their plan.

Poor take-up of direct payment scheme - social care policy brought in direct payment scheme in April 2004 so that service users could control their care budgets, yet there has been a worrying lack of capacity, motivation and any sort of support to enable this. Mind's concern is that social care services remain undeveloped, underfunded and overshadowed by clinical care and priorities. Less than seven per cent of council expenditure on social care is spent on adult mental health.

However, over the last 20 years, there has been the emergence of service user action. In 1985 "service users were nowhere, (in 2006) they are everywhere" (1). The emphasis is shifting from organisations such as Mind representing service user views to service users representing themselves. The movement has been much more involved in, for example, planning of health and social care services, with the growth of independent advocacy having positive impact.

History of Mind - key achievements

In 1946 the National Association for Mental Health was created from three major mental health organisations - the Central Association for Mental Welfare, the National Council for Mental Hygiene, and the Child Guidance Council. In 2006, Mind has over 1800 members. Much has changed in 60 years, and Mind has adapted its focus accordingly. Some key milestones over last 60 years:

1961 Enoch Powell made famous 'water tower' speech, announcing closure of large outdated psychiatric hospitals, and move to community care - for which Mind had been campaigning.

1962 Independent local Mind associations began to operate across England and Wales - today over 200 provide vital support and services to people with mental distress.

1971 25th anniversary, marks 'Mind', first major campaign to promote better understanding of mental health issues among the public.

1972 Name changed to Mind, to follow success of the campaign. Welsh Mind (Mind Cymru) is launched.

1983 Mental Health Act - Mind, via Larry Gostin (Mind's first Legal Director) was instrumental to the legislation: the Act owed much to his battles for patients' rights and need for advocacy. His book A Human Condition - Mind's proposals for reforming the Mental Health Act 1959 was the basis for the Act's Code of Practice.

1983 Mind campaigns for information on tranquilizers, over-prescribed since introduction in 1950s, with their addictive qualities now becoming recognised.

1983 Launch of Openmind magazine, unique in providing progressive mental health professionals, users and carers with stimulating coverage of the widest range of mental health issues.

1987 Mind Link network of mental health service users is set up to provide route for direct information and advice to Mind - now has over 2,000 members.

1993 MindinfoLine opens. Today, it receives over 26,000 queries a year.

1993 Mind publishes groundbreaking book Accepting Voices, an analysis of the experience of hearing voices, that led to the highly praised Hearing Voices movement, now with groups all over the UK.

1995 Mind's Yellow card scheme set up, giving service users the chance to report to the Medicines Control Agency on the side effects of their medication.

1997 Diverse Minds, making mental health services more responsive to the needs of Black and Minority Ethnic communities, was set up. It now has more than 350 members. Rural Minds, aiming to improve mental health for people living in rural communities, was launched. It now has over 500 members.

2000 Mind instrumental in amending Representation of the People Bill, extending the vote to people living in psychiatric hospitals.

2001 Mind's ongoing fight to tackle institutional racism in the NHS focuses on assisting the Bennett family in demanding an inquest into Rocky Bennett's death.

2003 Mind heavily involved in BBC Panorama programmes about SSRI antidepressant Seroxat, exposing serious problems many people experience with SSRIs.

2004 Publication of Government's Rocky Bennett inquiry report, upholding Mind's demands in making strong recommendations around control and restraint issues on mental health wards and leading to 
2005 Publication of Delivering Race Equality action plan. Mind's campaign leads to Government scrapping reduction of benefits for long-term mental health inpatients. Mind launches Coping with coming off report of groundbreaking research into people's experiences coming off psychiatric drugs.

The user-focused future

Mind will promote user participation in all aspects of mental health care by:

Building partnerships with service users/survivors and organisations to:

• address user participation in national policy and implementation in England and Wales
• ensure that issues of diversity are tackled at all levels
• strengthen the user movement both externally and within Mind
• inform and disseminate user-led research and views
• ensuring that user participation is integrated throughout the training and professional development of trainee mental health professionals.

(1) From Peter Campbell's Some things you should know about user/survivor action: a Mind resource pack.

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