Sharing experiences to shape research

By a CPFT Peer Support Worker

Research in mental health is important, especially studies involving people with lived experience. Researchers can choose to work with someone who lives with mental health challenges as they bring a wealth of resources when reflecting on their own recovery journey. An Expert by Experience can often easily and quickly recognise the barriers and opportunities of a research project. I think that lived experience can be a part of continuous improvement, with consent.

I regularly teach Conversations with Experts by Experience (CEbE) with CPFT sharing my lived experience with researchers studying mental health conditions. The teaching programme is led by people with lived experience and CPFT consultant psychiatrist Hisham Ziauddeen (@HZiauddeen). We aim to help researchers improve their understanding of the experience, reality and variability of mental health experiences. Researchers get to hear different perspectives on experiencing mental health issues, the various challenges we face, and how experiences can be similar, or different as we are all unique.

Working with researchers who have their own lived experiences is really inspiring because they have been through a recovery journey and use their expertise and insight to help shape their own research questions. Talking with researchers about their projects in detail has helped me learn more about myself.

Recently I was involved in a study exploring whether a self-help sleep improvement program can reduce insomnia and improve social recovery in early psychosis.  As a member of the Lived Experience Advisory Group I helped the researcher, Camice Revier, consider how potential participants might engage better, to benefit from this research study and develop appropriate information material. I felt that my involvement provided real world feedback on the research process and whether the methods are acceptable, constructive and include appropriate communication. This experience also improved my knowledge of sleep techniques, which has helped me to manage sleep issues better.

I wanted to share my experiences of mental health challenges during my recovery journey because I like to turn a perceived weakness into a strength, using my voice to improve care and treatment through research, being part of something bigger and helping others.

If you would like to be involved in research at CPFT and share your experience, watch this short film and get in touch with R&D user and carer manager, Iliana Rokkou.