An embedded service user and carer involvement strategy has been in place since the inception of the MHPRU, with an organisational structure to support this activity. There is a Service User and Carer Involvement Co-ordinator (Vicky Nicholls), an Involvement Lead (Sarah Carr) and a Deputy Director (Bryn Lloyd-Evans) with responsibility for overseeing Service User and Carer Involvement for the MHPRU.
There is a Lived Experience Working Group (LEWG) of 14 people with experience of mental or emotional distress and service use, both as service users or carers. The LEWG meet at regular intervals, 6 times a year. Drawing on their lived experience along with other skills and knowledge, members contribute to these MHPRU major activities:
- Advising on potential and live policy research projects through regular LEWG meetings and other channels.
- Membership of project working groups and research teams.
- Conducting research interviews.
- Developing and co-authoring research findings papers.
- Writing ‘lived experience commentaries’ published with research findings.
- Speaking at MHPRU events.
- Training in research skills.
The MHPRU also has a broader Lived Experience Advisory Network (LEAN) of approximately 50 members. Members are service users and carers with lived experience of mental and emotional distress and service use. Many are connected to service user and carer organisations and networks. Members get involved with advisory work and as members of project teams with relevant lived experience of the topic.
An evaluation of LEWG involvement is conducted annually.
A member of the LEWG, Karen Persaud has written a blog bringing her perspective of a carer.