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Service user and carer involvement in the MHPRU

Involvement Infrastructure

A service user and carer involvement strategy has been in place and embedded in the structure of the MHPRU since its inception. The infographic below illustrates the involvement infrastructure.

The PRU Involvement Management team comprises a Service User and Carer Involvement Co-ordinator and an Involvement Lead, who liaise with the PRU Directors and Deputy Directors. This team has responsibility for overseeing and supporting Service User and Carer Involvement at the MHPRU.

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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.
  • This group meet for half a day on a bi-monthly basis to advise, steer and be involved in projects and events.
  • 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.
The Lived Experience Advisory Network (LEAN)
  • A wider, network of people with lived experience of mental distress and service use, either as service users, carers or both.
  • As needed, members advise on research projects, and contribute to seminars and events.
  • As needed, members with relevant experience and expertise are invited to get involved with research projects.
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.

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 has been established as 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 reseaarch training and development programme is open to all members of the LEWG. So far, we have offered sessions on qualitive research, interviewing and data analysis. 

For interview training, this includes:

  • an introduction to principles
  • user involvement and disclosure
  • a role play
  • anticipating challenges

For analysis training, this includes:

  • an introduction to approaches to qualitative analysis
  • peer involvement in analysis
  • a coding exercise
  • what to do when coders disagree

All those completing the training are able to carry out qualitative research for the MHPRU. Future planned training sessions will cover: systemic reviewing skills, and writing for publication, including lived experience commentaries. 

Public Engagement

The public are engaged in the work of the MHPRU through social media, online platforms, public events and networking.

    Service User and Carer Involvement in Core MHPRU Activities

    Drawing on their experience, skills and expertise, LEWG members  contribute to all MHPRU research activities:

    • Members of research project teams 
    • Co-authors of peer reviewed journal published research papers and report
    • Authors of Lived Experience commentaries for published research papers
    • Speakers at and contributors to public events and seminars

    Members of LEWG are involved in research work and receive research training.

    LEWG involvement is evaluated and reviewed by LEWG members.

    • Speakers at and contributors to public events and seminars