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:

  1. The loss of knowledge, peer support opportunities and advocacy through the disappearance of user-led organisations (ULOs).
  2. The social and wellbeing impacts of no collective voice for service users and resulting power imbalances.
  3. The unique and valued role of ULOs in the individual self-empowerment and involvement of service users.
  4. The particular capacity of ULOs to support diverse involvement and to challenge the exclusion of BAME and other marginalised groups.
  5. Funding trends that exclude or severely disadvantage ULOs.

The Future of User Led Organisations 4 April 2019 – Briefing (pdf)

The Future of User-led Organisations Event 21.5.19 Summary – A dialogue between user-led groups and funders (pdf)