Service users and carers have been involved in all stages of the Primrose project. We have taken advice from expert service user researchers and the Camden and Islington Service User Research Forum (SURF) when designing the research protocol.
25 service users have taken part in focus groups to inform the intervention development. A lived experience trainer has been involved in delivering the training to practice nurses.
We have collaborated with the charity and lobbying group Rethink Mental Illness who convened an external lived experience advisory panel (LEAP) of service users and carers to advise on all aspects of the primrose project. This work is now being led by The McPin foundation.
The Lived Experience Advisory Panel (LEAP)
The Lived Experience Advisory Panel (LEAP) is a group of people with lived experience of mental illness. The main LEAP is comprised of service users and carers. Their experience of mental health offers unique insight as a 'critical friend' to the PRIMROSE project. Members of the LEAP offer their expertise by experience, seeking to ensure that the PRIMROSE project is more relevant, satisfactory and meaningful to people with mental health problems and their carers. The LEAP has allowed the involvement of people in the overall PRIMROSE programme and seeks to ensure that people's voices are not only heard but also valued, so making a contribution to improving the physical health of people with mental illness.
LEAP Intervention Development Group (IDG)
The LEAP Intervention Development Group (IDG) is a smaller sub-group of the main LEAP comprised of 8 service users and carers. The group has informed the development of an intervention delivered by nurses in GP surgeries for people with mental illness at risk of heart problems or stroke (cardiovascular disease) and offered specific advice and recommendations on how the intervention might best work in practice. The IDG seeks to make the intervention more acceptable, meaningful and satisfactory, to try and increase uptake and attendance at appointments.
The IDG has offered feedback on how the intervention might best work in practice; how nurses should be trained to deliver the intervention and how service users and carers can be involved in this training. The IDG have also explored possible enablers and barriers to accessing the intervention and good and bad practice for service delivery. The ultimate contribution has been a series of eleven key recommendations to inform the Primrose intervention and training programme.
Peer-led Qualitative Project
The McPin Foundation are leading a qualitative project to explore why people agree or decline to take part in mental health research using the PRIMROSE research study as an example. Interviews are being carried out by peer researchers and it is hoped that the findings will lead to an understanding of barriers and facilitators to participating in research and will help researchers develop effective recruitment strategies for future mental health research studies.
The LEAP Blog and Twitter
The LEAP blog and service user researcher twitter account can be accessed via the web- links below: