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  1. Resources
  2. Involvement and influencing

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.

You can 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.

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.

Service user involvement and co-production: the MARD project (2007)

Documents by the Making A Real Difference (MARD) project.

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Valuing involvement
Involvement policy
Good practice
Working with diverse groups
Communicating with diverse groups
Making events more inclusive
Minimum standards for working with diverse groups
Commissioning guidelines
Leadership training
Payment and reimbursement guidance
Benefit conditions
Communication strategy
Staff induction pack
Training resource
Payment and reimbursement template
Monitoring and evaluation tools
Involvement passport
Final project report
HASCAS report on the MARD project

Published: 26th October, 2017

Updated: 4th December, 2020

Author: Stephanie Taylor King

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Service user involvement and co-production publications

Publications by the members of the national survivor user network (NSUN), network for mental health, on user involvement and co-production

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The case for co-production
Charter and Guidelines for Partnership Working between Generic and Black and Minority Ethnic User/Survivor-led Organisations (TOOTS)
Dancing to our own tunes by Jayasree Kalathil
Making user involvement work by Peter Beresford
On our own terms by Jan Wallcraft
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

Published: 26th October, 2017

Updated: 4th December, 2020

Author: Stephanie Taylor King

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Unlocking Service User Involvement Practice in Forensic Settings (2011)

NSUN commissioned WISH to conduct a review of involvement practice in forensic settings.

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NSUN commissioned WISH to conduct a review of involvement practice in forensic settings.

The resulting report has now been published.

Many NHS and independent sector forensic units are failing to provide adequate and meaningful opportunities for service user involvement.

This is the conclusion of a review carried out by WISH on behalf of NSUN and published in October. Just under half (74) of the 154 secure psychiatric hospitals identified in the survey returned the questionnaire.

The responses showed low levels of user involvement and a widespread lack of robust structures that would give service users a meaningful say in how services are designed and delivered.

In only 55% of NHS hospitals was there a member of staff with specific responsibility for service user involvement. The most common type of forum for service user involvement was the weekly community meeting (96%), followed by the patient’s council (47%).

The issues dealt with were mainly day-to-day concerns, such as smoking, activities, food, and the ward environment. Many units lacked any mechanisms for feedback or to evaluate effectiveness of these forums.

The report makes several recommendations – not least that all forensic hospitals should have a designated service user involvement lead post, and a senior manager with specific responsibility for user involvement. NSUN says forensic units also need clear guidelines on good practice and mechanisms for ensuring feedback and assessing the effectiveness of user involvement structures and forums.

NSUN will use the survey findings to bid for funds for further research into embedding user involvement in forensic settings.

An implementation plan will set out how the recommendations will be taken forward.

To find out about WISH please visit https://www.womenatwish.org.uk/

Document by this project:

Forensic report

Published: 20th November, 2017

Updated: 4th December, 2020

Author: Stephanie Taylor King

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Values-based commissioning (2014)

Partnership project around supporting people with lived experience to gain proper input into the commissioning of services they use.

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What is commissioning?

Commissioning is the process of making sure that health and care services meet the needs of the population in each local area. Commissioners set priorities and organisations are selected to provide health services for local people.

NSUN seeks to improve service user involvement by supporting people with lived experience to gain proper input into the commissioning of services they use.

Values-based commissioning

Traditional commissioning relies on scientific and research evidence to make decisions about what kinds of services should be prioritised and paid for. This can overlook the experiences and opinions of people who actually use the services, so what’s provided might not meet people’s needs. In ‘values-based’ commissioning, the views and experiences of people who use services have equal weight to the scientific and research evidence.

“Values-based commissioning is a practice where everyone becomes equal partners. Service users, carers, clinicians and managers all become part of the commissioning model regarding mental health. There’s joint ownership and there’s no power issues really. So, services users and carers have more of a say in what goes on in the services they receive”. (Service user and carer)

We know that this is far from the reality in many places at the moment. Many people aren’t happy with the mental health services in their area and some have had poor or even traumatic experiences. Values-based commissioning could be your chance to have a say and change services for the better. Telling commissioners how it feels to be on the receiving end of services and suggesting improvements could make a real difference to health services and the people who used them.

Output:

Influencing Mental Health Services, guide to Values Based Commissioning (NSUN in partnership with Mind).

Values based commissioning report

Published: 20th November, 2017

Updated: 4th December, 2020

Author: Stephanie Taylor King

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Employment and Support Allowance (ESA) and Service User Involvement

Where to find advice on being paid for involvement opportunities without affecting ESA payments.

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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.

Published: 27th July, 2020

Author: Amy Wells

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© 2020 The National Survivor User Network (NSUN) is a registered charity in England (no.1135980) and a registered company limited by guarantee (no.07166851). NSUN, Kemp House, 152-160 City Road, London EC1V 2NX