The number of Experts by Experience (EbE) working in mental health services has grown in recent years. The National Health Service (NHS) five-year plan states EbE should be used across different levels, including service delivery, design and commissioning. While current research explores the role of EbE in service delivery, little is known about their experiences of co-designing services. This study aims to explore EbE experiences of co-designing NHS mental health services.
This research used qualitative semi-structured interviews with ten participants who had worked on projects focused on co-designing NHS mental health services as an EbE. Data were analysed using reflexive thematic analysis.
Analysis identified four themes and associated subthemes. Themes emphasised the importance of being involved from the start of projects, with late or limited involvement leading to feelings of tokenism. Co-design was described as emotionally demanding but meaningful. Findings suggested that connection both between EbE and with the wider organisation was central to supporting feelings of safety. When organisational support or feedback was lacking, participants questioned if their contributions were listened to. Findings emphasised the need for systemic support to enable meaningful co-design.
This research provides new insight into how EbE experience co-designing NHS mental health services. It highlights how EbE find community and value in co-design work, and stresses the need for systemic support to enable EbE to fully participate. Future research should explore how intersecting, marginalised identities shape experiences of co-design.
