Involvement & Influencing

This page has a collection of publications, reports, and practical guidance on the involvement of people with direct experience of mental distress and/or mental health service use.

You can also find more detailed information about our 4Pi National Involvement Standards here.

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.

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. 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 project was completed March 2007. Resources 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. You can read the final project report here.

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.

Employment and Support Allowance (ESA) and Service User Involvement

If you are in receipt of income-related ESA, you can find advice on how to receive payments hassle-free from any service user involvement opportunities you may choose to take part in through a new guide produced by Judy Scott.

Judy is an independent welfare rights advisor who has advised the Department of Health, NHS Trusts and many UK wide charities on how service users and carers who they involve in improving their services, and who are in receipt of state benefits, may be paid for their time without putting their only income at risk. 

Please click here to view an informational leaflet about the guide. The guide can be bought here. It is available as a paperback or as an eBook for Kindle.

Service user involvement and co-production publications

Making user involvement work by Peter Beresford

Strategies for living: user-led research into strategies for living with mental distress

User involvement – a brief literature review by Alison Faulkner

Ethnic inequalities in mental health: promoting lasting positive change – a consultation with Black and minority ethnic mental health service users

For NSUN’s publications on involvement, influencing, and co-production, please visit our publications and tools page and click ‘involvement and co-production’ in the filter on the right hand side.