UK Mental Health Service User and Carer Research Groups

This directory is a list of UK service user and carer groups that are involved in current mental health research. Our aim is to make it easier for people to get involved in mental health research, not as participants but as people driving or involved in driving the research questions, designing studies, collecting data and dissemination of findings.We have included information about a wide range of groups including:

1) Open consultative groups
2) Project-specific groups
3) Institution or initiative-specific groups
4) Free-standing organisations.

For more detail about the types of groups, please see the section entitled ‘How groups are classified’.

Each directory entry includes contact details, the remit of the group, frequency of meetings, who can consult the group, website details and publications, if applicable.

We have not included information on individuals such as independent survivor researchers or service user researchers working in larger academic teams. There are a lot of individuals who do carry our mental health research drawing on lived experience as a service user or carer or are interested in doing so. This directory, however, only covers groups.

This directory was compiled by Julie Billsborough, Researcher, The McPin Foundation.

We hope you find the resource helpful and easy to use. If you do have any feedback then please get in touch with us at contact@mcpin.org.

The directory was developed between September and December 2014. It was compiled from existing contacts, internet searches (concentrating on mental health trusts and universities) and existing directories. These included INVONET, the Shaping Our Lives Network; and the Leicestershire, Northamptonshire and Rutland Research Engaging with Patients and Public directory.

The UK Clinical Research Network: Portfolio Database (public.ukcrn.org.uk) was also used to find individual mental health studies. Only studies with at least two years left to run were contacted. Our aim was to avoid the directory becoming out-of-date too quickly. One academic journal was used – The Journal of Consumer Studies – which ran two special issues on service user and carer research. Individual authors whose studies appeared in these two issues were contacted.

We advertised the project via the McPin website, the Royal College of Nursing website, the North West People in Research Forum, various publications (Research Design Service for the East Midlands, the NIHR CRN Mental Health: Mental Health Service User & Carer Bulletin), email lists including the National Survivor User Network (NSUN), INVOLVE and the Mental Health Academics UK Group, and Twitter.

A total of 231 organisations and individuals were contacted. Fifty-five did not respond. Many organisations had no formal involvement in mental health research. A small minority did not want their involvement groups listed as they were not open to new members or for other reasons. Some people did not have the time to provide the information.

In particular, it was difficult to find out about specific studies that had involvement groups attached to them. Some research groups had set up an involvement group in the first stages of the research project, but had closed the involvement group once the study was underway. Other studies used local service user groups to provide input, rather than having a dedicated group attached to the study. In general, studies with no-one to support service user and carer involvement found it more difficult to keep the group actively involved.

Not all single study involvement groups were included in the directory. Some did not want more members as the studies were part-way through, and felt it would be too difficult to get new members up-to-speed, while some research groups were in the process of setting up their involvement group or looking for funding to support involvement. One international study did have involvement overseas but not in the UK.

Organisations with a dedicated person in charge of involvement made it easier to find out about involvement. However, in many organisations, there was no dedicated involvement coordinator role and thus sometimes, there was a general lack of knowledge surrounding involvement in research.

Directory entries have been grouped by region – the location where group meetings are held. Groups are then listed alphabetically within each region. Some groups do not meet formally, while others are virtual groups. These groups have been listed under ‘national/virtual’.

Directory entries have been grouped, firstly, into UK regions with one additional category of ‘national/virtual’. Groups have then been categorised into four distinct groups. These are:

1. Open consultative groups (9 groups found)
These groups include specialist groups such as the NIHR CRN: Mental Health, Military Mental Health Research Steering Group. Generally, these groups can be approached by anyone.

2. Project-specific groups (18 groups found)
These groups are linked to specific mental health research projects. They include studies being carried out by one institution, to large multi-site studies, for example, the three Lived Experience Advisory Panels that have been set up as part of the PARTNERS 2 project in Birmingham, Lancashire and Devon.

3. Institution or initiative-specific groups (53 groups found)
These groups are attached to specific institutions or initiatives. There are a range of groups within this category, including groups are attached to specific university departments, mental health trusts or attached to a particular initiative such as the Research Design Services. Many of these involvement groups are mental health-specific, whilst some are involved in both mental and physical health research.

4. Free-standing organisation (8 groups found)
These are independent groups in their own right and include service user-controlled research organisations, service user or carer networks, and groups which aim to support public involvement in health research.These groups are not definitive. Some groups fall into more than one category. We’ve constructed these categories to organise the groups and to give some idea of the role and function of the group.

If you would like your group to be included in the directory, or would like changes to your entry, please get in touch with us at contact@mcpin.org

We would like to thank everyone who contributed to this directory including those who provided information for directory entries, everyone who helped to publicise the project, those who have provided contacts and everyone who has helped with the project in any way.