This page has a collection of resources on the involvement of people with experience of mental distress and/or mental health service use (sometimes called “experts by experience”) in the design, development and delivery of services, and in policy and research settings. This is usually called “service user involvement” or “co-production”.
You can find more detailed information about NSUN’s own co-production framework, the 4Pi National Involvement Standards, here.
Starting your own service user involvement group
There are ways that you might want 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.
Information for people involved in Patient & Public Involvement: impacts of payment
The Patient and Public Involvement Programme (PPIP) provides NICE (the National Institute for Health and Care Excellence) with advice on involving patients, carers and members of the public in service design or delivery. Find out more about the Patient and Public Involvement Programme here.
Impact of involvement payments on welfare benefits
Doing paid involvement or co-production work with services or researchers can be considered ‘earnings’ and so it is possible that there will be an impact on state benefits, liability for tax and National Insurance. Organisations and bodies that engage people in paid involvement work should be flexible with your payment arrangements if you are in receipt of benefits, including for example giving you the choice in how you wish to be paid, such as just requesting that just your expenses are covered or that you receive a lower amount to avoid crossing your earnings threshold, and they should be able to provide official letters explaining your involvement work to show benefits advisors or other officials.
The Co-Production Collective have an information sheet on payments and benefits that may have some useful information.
The National Institute for Health and Care Research (NIHR) provides some relevant information on the potential impact of public involvement payments (in the context of research participation) on welfare benefits on their ‘Payment guidance for researchers and professionals’ webpage under point 4.2 and point 6, which is also available on their version of this webpage aimed at members of the public, ‘Payment guidance for members of the public considering involvement in research’.
The NIHR also provides information on the employment status and tax implications of being paid for involvement work in research on their ‘Payment for public involvement in health and care research: a guide for organisations on employment status and tax’ webpage, but please note that this is aimed at the organisations/researchers paying public contributors.
Finally, the Social Care Institute for Excellence (SCIE) provides information on benefits implications for organisations looking to engage people in paid involvement.
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 guide produced by Judy Scott.
Judy was 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.
The guide can be bought here. It is available as a paperback or as an eBook for Kindle.
Service user involvement and co-production resources and publications
For NSUN’s own publications on involvement, influencing, and co-production, including the 4Pi Involvement Standards, please visit our publications and tools page and click ‘involvement and co-production’ in the filter on the right hand side.
In 2023 Shaping Our Lives produced a resource called My Voice Matters, a guide for people who want to share their lived experience in service, research, and policy settings. Find the guide and lots of other related resources via their website.
Other resources and 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
- The Ladder of Co-Production by Think Local Act Personal and National Co-production Advisory Group (NCAG)
- Social Care Institute for Excellence’s Co-production Guidance
- The Co-Production Collective’s resources including their new Co-Production Resource Library
- Tickboxes and Tokenism? Service User Involvement Report 2022 by Shaping Our Lives
- ‘On Our Own Terms’ and ‘Making A Real Difference’ (below).
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.