Shaping Our Lives and the National Survivor User Network (NSUN), two key national disabled people’s and service user networks, have both experienced considerable numbers of user-led organisations closing over the last three years. The two organisations decided to raise awareness of the crisis facing user-led organisations by writing a briefing and hosting an action workshop. Shaping Our Lives and NSUN are grateful to the Lankelly Chase Foundation for their support with bringing user-led groups and funding organisations together discuss these issues summarised here:
- The loss of knowledge, peer support opportunities and advocacy through the disappearance of user-led organisations (ULOs).
- The social and wellbeing impacts of no collective voice for service users and resulting power imbalances.
- The unique and valued role of ULOs in the individual self-empowerment and involvement of service users.
- The particular capacity of ULOs to support diverse involvement and to challenge the exclusion of BAME and other marginalised groups.
- Funding trends that exclude or severely disadvantage ULOs.