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Warwick Medical School

Patient and Public Involvement

Patient and Public Involvement (PPI) means actively working in partnership with members of the public and patients to plan, manage, design and carry out research.

In the OPAL study, to ensure we get the opinions and expertise of those who have experience of being carers or being treated under the Mental Health Act (service users), we have formed a national Lived Experience Advisory Panel (LEAP). The LEAP is chaired by Deb Smith, a carer with experience in lay advisory committees in the research field and Zhenreenah Muhxinga, a carer with experience in service development and leading carer peer support groups. The LEAP consists of 10 carers and service users that provide recommendations and feedback based on their knowledge of local issues and diverse experiences related to being carers and service users.

 

The LEAP meet regularly throughout the duration of this project (every 4-6 months). The meetings engage members in designing the carer peer support programme alongside researchers and health care professionals. LEAP members are updated on the progress of the project by the research team and informed on how their contributions have been incorporated into the project. These meetings commonly take place online but some will take place face to face.

 

The LEAP impact on the OPAL study so far includes:

  • Highlighting the need to include safeguarding within the training programme to ensure the safety of carers receiving the intervention. As a result, safeguarding procedures have been included in the training programme, including training on how carer peer supporters should respond to different safeguarding scenarios.
  • Suggesting the need for extra resources, such as leaflets, to help signpost carers. Handouts detailing information about the Mental Health Act (including relevant sections and rights), as well as information on safeguarding, have been developed and will be provided to carer peer supporters and carers as part of the intervention.
  • Suggesting that at the beginning of the peer support intervention, carer peer supporters and carers receiving support should meet in person at least once. However, they were open to seeing how this played out during feasibility testing. The training manual now details that the carer peer supporter and carer receiving the intervention should have their first session together in person, if possible.