BACKGROUND: Health and social care services increasingly recognise the value of involving people with lived experience in service design and delivery. For people who have experienced multiple disadvantage (combinations of homelessness, mental ill health, addiction, involvement with the criminal justice systems or domestic violence/abuse), participating in professional settings may be challenging and can risk re-traumatisation and greater disillusionment. However, gaining confidence and competency to do this offers opportunities for personal and professional development, contributing to meaningful change. It is necessary that individuals with lived experience can engage safely and effectively in these settings. This study analyses how an organisation of people who have experienced multiple disadvantage, Independent Futures (IF), enabled co-production within services and systems, to understand how people can be best supported and how involvement impacts them.

METHODS: Sixteen IF members and three IF staff participated in semi-structured interviews. A staff survey, at two time points, investigated how employees from Changing Futures partner organisations perceived their ability to embed co-production within services, with 147 responses. Internal documentation was analysed to illustrate the diversity of co-production work that IF contributed to.

RESULTS: Putting trauma-informed principles into practice facilitated personal growth, improved confidence and some work skills for IF members, who contributed to 65 different workstreams. However, embedding co-production into wider services and systems proved challenging. Staff survey comments highlighted obstacles related to resources, time and hierarchical cultures.

CONCLUSION: Lived experience organisations can model trauma-informed practice and influence systems. Embedding trauma-informed principles requires flexibility, openness and willingness that is sustainable only when everyone adopts and commits to these principles. Any evidence of tokenism destroys trust and undermines the endeavour.

PUBLIC CONTRIBUTION STATEMENT: This study was co-produced with people with lived experience of multiple disadvantage and staff participants. Two lived experience IF members were involved in: developing the funding bid, designing the research including designing the staff survey, developing interview topic guides, commenting on information sheets and developing interview arrangements to ensure comfort and safety of IF members. Four lived experience IF members and three members of staff contributed to writing the paper, including reviewing key literature, refining the analysis and developing the discussion and conclusion.