Presented at our conference in 2003

Users and survivors of mental health services working together for support and change

This survey conducted in 2001-02 found that the service user/survivor movement in England provides a valuable resource for those seeking a better deal from mental health services and for those wanting to move away from services and rebuild their lives. It has supported advocacy, self-management, recovery and reintegration, and is helping to educate workers, the media and the general public, usually on a shoestring budget.

The movement needs and deserves recognition and financial support, which should be provided with as few strings as possible. It needs to remain independent in order to offer critical comment on services and to provide alternative sources of support and information, while being strong enough to have a real impact on mainstream service delivery for those with severe and long-term problems. User involvement is working fairly well in many localities, though less well nationally. There is a need for national standards on user involvement and for much stronger commitment at all levels to the implementation of the outcomes of involvement.

Key findings

The service user/survivor movement exists and a large number of people see themselves as belonging to it. It developed rapidly in the 1980s and 1990s, partly because of community care policies and the encouragement of user involvement, and partly because of the work of dedicated individuals.

Local and national groups and networks provide mutual support, take part in decision making and provide information, education and training, creative activities, campaigning and services.

Funding for groups and networks is usually insecure and insufficient for their needs.

The movement is predominantly white and needs to improve its ability to reflect the diversity of race, culture, gender and sexuality among service users/survivors.

There is a growing Black service user/survivor movement which is struggling for resources and recognition.

There is a broad area of agreement in the movement about the importance of being treated as an individual, not a label, a general dissatisfaction with the standards of existing mental health services, opposition to any extension of compulsory treatment, and demands for an end to discrimination and prejudice on mental health grounds, and for services oriented towards recovery, employment and social inclusion.

There are issues that are controversial within the movement or that have not yet been debated fully enough, including forced treatment, the biomedical model versus more social models of mental health, closer working with the disabled people’s movement and drug company funding.

User involvement is happening at a local level with 72% of service user/survivor groups engaged in some form of consultative or decision-making body, often linked to implementation of the National Service Framework (NSF) for Mental Health. There seems a genuine willingness to involve service users/survivors, led by government policy directives. User involvement at a national level seems to be working less well, partly because the movement is currently not well organised nationally.

Though user involvement is happening in many areas, the quality is variable. User involvement is an important part of what the movement does, but service user/survivor groups exist for many other reasons and some choose not to do user involvement work. The movement exists independently of its role in user involvement.

Recommendations

In order for the movement to reach out to greater numbers of service users/survivors and to have a substantial influence on mental health policy and service provision, there needs to be a strategy, based on a collaboration between the service user/survivor movement, the government, health and social services and voluntary organisations, with the following aims:

A. To build the capacity of the movement to support and represent service users/survivors.

B. To strengthen and develop user involvement nationally and locally so that it can have a real impact on service provision.

C. To develop a new integrated prevention, self-management, recovery and inclusion focus for all mental health services and related social and employment services.

A. Building the capacity of the movement

The movement provides a valuable service to people wanting to move away from services and rebuild their lives. It has supported self-management, recovery and reintegration, and is helping to train workers, inform the media and educate the general public, usually on a shoestring budget. It deserves recognition and financial support, which should be provided with as few strings as possible. The movement needs to retain its independence in order to provide advocacy and offer critical comment on services.

Recommendation 1: enabling stronger local, regional and national service user/survivor networks

The movement should be financially resourced and practically supported to build stronger local, regional and national networks.

Funding for this should be secure and should be given with minimum strings attached.

Many local groups need help with finding premises and employing workers, which might be done best via the voluntary sector with statutory funding.

Special projects should be supported to develop local service user/survivor-led services, self-help and information networks via regional development centres (RDCs).

There should be regional and national support for service user/survivor led research, via the National Institute for Mental Health in England’s (NIMHE) Mental Health Research Network (MHRN), Mental Health Foundation (MHF) and SCMH.

An information technology (IT) strategy is needed to help local groups to access and use internet communication, and to develop a national movement website and online journal. NIMHE and Mental Health Media may be helpful in this.

There should be a funded national support organisation for service user/survivor workers. This could be linked to a general trade union such as General Municipal Boilermakers (GMB) or Transport and General (T&G).

Lead for local and regional development: NIMHE, RDCs, primary care trusts (PCTs), strategic health authorities (StHAs), and local councils for voluntary service (CVS). Lead for national development: NIMHE, SCMH, MIND, Rethink, Mental Health Foundation (MHF).

Recommendation 2: development of a national voice for the Black service user/survivor movement

This was also recommended by the recently published SCMH report Breaking the Circles of Fear (The Sainsbury Centre for Mental Health, 2002).

Development funding is required to enable leading Black service users/survivors to come together regularly and to start a process of outreach and discussion with Black service users/survivors around the country.

Based on this work, secure funding is likely to be required to develop the capacity for local groups to be set up to provide mutual support and a base for greater involvement in decision making. Lead: NIMHE, SCMH.

Recommendation 3: increasing the user movement’s capacity to represent diverse experiences

A national programme should be developed to make available to service user/survivor groups quality training to eliminate any possible racism and homophobic attitudes, and to raise awareness of disability issues.

This training could be co-ordinated by UK Advocacy Network (UKAN) and/or Mindlink with practical support (e.g. venues and equipment) from RDCs. Appropriate trainers and courses could be recommended by the Commission for Racial Equality (CRE), PACE (organisation for gay and lesbian mental health) and the British Council of Disabled People (BCODP), and adapted to a mental health context. Lead: NIMHE RDCs and Experts by Experience Group, UKAN and Mindlink.

B. User involvement in improving services

National guidelines for user involvement should be developed and implemented. Service user/ survivor priorities should be integrated into the NSF for Mental Health when it is next revised.

Recommendation 4: development of national good practice guidelines for user involvement

A task force should be set up to develop a set of national guidelines for user involvement, based on the Draft Principles on User Involvement in this report (p. 63).The Department of Health (DoH) should then issue guidelines to StHAs, PCTs and NHS trusts. Lead: NIMHE Experts by Experience Group, leading service user/survivor networks.

Recommendation 5: revision of the NSF for Mental Health to include user perspectives on services:

At the point when the NSF is next revised and updated, NIMHE (through its Experts by Experience Group) should co-ordinate a consultation exercise on how to integrate service user/survivor perspectives into the revised Framework.Lead: DoH Modernisation Agency and NIMHE.

C. A new integrated prevention, self-management, recovery and inclusion focus for all mental health services and related social and employment services

Recommendation 6: a national forum to refocus mental health services towards prevention, early intervention, recovery and social inclusion

NIMHE should host a forum to discuss refocusing mental health services towards prevention, self-management, recovery and social inclusion. This could draw on the work of the existing NIMHE expert groups and link with other bodies such as the Social Exclusion Unit and other relevant government departments. This would then provide a basis for research and development to revitalise mental health services around a new value base closer to that proposed by the service user/survivor movement. Lead: NIMHE Experts by Experience Group and the NIMHE Values Project.

The full “On Our Own Terms” is available from the Sainsbury Centre for Mental Health website as a pdf file.

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