Service User and Carer Involvement in the MHPRU

Lived Experience Working Group (LEWG)

The MHPRU’s research is supported by a diverse Lived Experience Working Group (LEWG), who offer advice and support across the whole programme of work and are involved in research projects. In this way ‘involvement’ has been embedded in the MHPRU.

This infographic illustrates our involvement infrastructure:

Our Involvement Strategy

The Lived Experience Working Group

• A group of 14 people was selected through open recruitment and interview to provide a range of mental health lived experience and research involvement skills and experience.
• The group meets remotley every month to advise the MHPRU programme, the various projects, and to discuss andy issues around involvement in ongoing work. 
• The LEWG is supported by a Service User and Carer Involvement Coordinator, and a Public Involvement and Engagement Lead.
• Members with relevant interest, experience and expertise are involved in research project teams.
• All members have the option to be paid for their involvement and expenses are paid.

Lived Experience Involvement in PRU Project Teams

• LEWG members co-designed the selection process for research project involvement, based on people’s experience, skills, expertise. For example, for a project where particular lived experience or skills are need, a member will be matched to the project wherever possible.
• LEWG members are also invited to monthly ‘reflective spaces’ for peer-support and as a space to reflect on any issues arising from their involvement in projects.
• Where relevant lived experience is not represented in the LEWG, people with additional experiential expertise have been sought for projects from relevant service user and carer networks.

Lived Experience Commentaries and Co-authorship

• Project team members from the LEWG write Lived Experience Commentaries to provide critical reflections on MHPRU research papers. This innovative practice has become a standard part of MHPRU scientific publications. Authors are usually named, but have the option to remain anonymous if they wish.
• LEWG members co-designed guidance for Lived Experience authors of commentaries, and MHPRU staff researchers working with them.
• Where someone with lived experience has significantly contributed to the content of a paper, they are acknowledged as a co-author.

Research Training and Development

• An ongoing research training and development programme is open to all members of the LEWG. So far, we have offered sessions on qualitive research, interviewing skills and data analysis understanding ‘experiential knowledge’; doing systematic reviews; and researching ‘sensitive’ topics.

Public Engagement

• LEWG members have been speakers and panel members at public events and seminars. Members of the LEWG have been working on a series of podcasts about involvement in research.
• The public are engaged in the work of the MHPRU through social media, online platforms, public events and networking.