Involvement and influencing

This page has a collection of publications, reports, literature review and practical guidance on the involvement of people with direct experience of mental distress and/or mental health service use. See reports and products to download at the bottom of this page.

There is a wealth of information within the service user / survivor movement and we hope we have given you an insight into just how much knowledge, experience and expertise there is.

See our  Glossary of terms for  definitions of the 'service user movement', service user, service user led and service user involvement.

Alison Faulkner produced a brief literature review for the Mind Involvement Strategy in 2009. You can read this below.

Starting your own group

There are many ways to get involved and have influence in how mental health services are planned and delivered. Having the support of your peers is an effective way to organise collective action. You can find out about some of the practical steps and considerations in setting up a group and planning your work here.

On Our Own Terms

In 2001-02, service user-led research, coordinated by Jan Wallcraft, resulted in the report ‘On Our Own Terms’ in 2003. The report can be downloaded from the list below. Among other recommendations, it urged the formation of a national network to bring groups together, to encourage good practice, and to build capacity within the sector.

‘This survey …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.’

Making A Real Difference (MARD)

The Making a Real Difference products, which can be downloaded from the list below, were completed March 2007. They were developed in partnership with people using mental health services and carers following the HASCAS report, which made recommendations for improving service user and carer involvement at policy level. The systems, guidelines, policies and procedures aimed to develop a systematic approach to involvement.

What was produced was a comprehensive set of minimum standards which lay the foundations for effective service user and carer involvement, to be built on in whatever structure exists.

Patient & Public Involvement

The Patient and Public Involvement Programme (PPIP) provides NICE with advice on involving patients, carers and members of the public. Find out more about the Patient and Public Involvement Programme including contact details.