Hafal, with support from Mind Cymru, have agreed to deliver the User and Carer Participation (UCP) programme as described below. The lead officers are David England (Hafal) and Ruth Coombs (Mind cymru).

Key principles

• Plan and implement the UCP programme so that service users and care-givers in all parts of Wales are fully integrated into MHRN-C initiatives;
• Work closely with service users, carers and voluntary sector partners to ensure that the views, interests and expertise of people with experience of mental distress are at the core of the MHRN-C work programme;
• Work closely with the Clinical Research Collaboration – Cymru (CRCC): Involving People (Cynnwys Pobl) Infrastructure Support Group.  

General aims

• Increase recruitment in research studies and broaden the opportunity for service users and care-givers to be actively involved.
• Facilitate involvement of service users and care-givers by building upon existing examples of good practice in Wales.
• Act as a resource to assist service users and care-givers wishing to undertake research for the first time.
• Adopt and develop good practices associated with similar initiatives in other countries (e.g. SURGE) in order that lay people, primarily care-givers and people who self identify as having experienced episodes of mental distress, are able to establish the priorities for research projects to be run on MHRN-C.

Objectives

Develop and maintain a register of service users and care-givers who would like to be involved in any of the following research activities:-

• preparing research proposals,
• implementing research projects,
• working in support of the CRC Involving People Infrastructure Support Group.

Ensure that each research proposal received by MHRN-C is:-

• rated by a number of service users and care-givers and only those achieving a score above a threshold go onto further consideration, or
• developed by a research group which includes service users and/or carers as core members.  

Develop and implement an agreed training programme to support service users and care-givers in the UCP programme.

Develop guidance, and any necessary training initiatives, to ensure that researchers in Wales are able to develop meaningful “lay-summaries” for the benefit of service users and care-givers.

Provide adequate training and support for the registered service users and care-givers who will be required to work alongside research teams and to engage in a variety of tasks including monitoring progress and suggesting ways of increasing involvement.

Support allied initiatives within MHRN-C, such as information and communication strategies, including web site development.

Monitoring requirements

Preparation of regular quarterly progress reports.