Background: Since 1990, health policy in England has stressed the importance of user involvement in shaping and delivering services.
Aims: To explore mental health service user-led organisations (ULOs) in England, as they interact with decision-makers to bring about change desired by them with a focus on institutional norms behaviour and specialised knowledge impacting service users' relationships with services.
Method: An ethnography of five ULOs in two provider organisations (NHS Trusts) including observing their meetings and interactions with decision-makers, conducting in-depth interviews and collecting reflective diaries kept by two members of each group.
Results: During the study, one group ceased to operate. This was a group which refused to adopt the institutional rules and norms of managerial discourse. The other four groups survived by navigating the changing environment which existed at the time of the study, although often at some cost. Themes of autonomy and leadership were also identified.
Conclusion: The current environment is one of the organisational complexity and change and the place of ULOs is an ambiguous one as they strive to maintain autonomy whilst at the same time being an acceptable voice to managers.
Keywords: Service user led organisations; patient and public involvement; service user involvement; user led organisations.