The Value of User Led Groups - 2019 campaign

NSUN’s main campaign in 2019 is the value of user-led groups - that is demonstrating the huge value of user-led groups in our society and fighting the cause for their survival.

With the continued increase in the number of groups’ closures, many collectives of oppressed and marginalised people are under threat of disappearing, which can have devastating effects on group members.

For World Mental Health Day 2019, we  spoke about the crisis user-led groups are facing and the vital role they play in supporting people through their most difficult and distressing times.

Read our special World Mental Health Day feature here.

The Value of User Led Groups: survey results

We asked ALL NSUN member groups and organisations (not just user-led groups) to help us in completing our survey.

We asked  user-led groups to share their current experiences and concerns for the future. Responses will help create a social media campaign to raise awareness of the value of and challenges facing user-led groups and feed into our work with other user-led groups to find ways of overcoming the challenges and solutions to some of the problems we're facing.

The results will underpin our campaign for this year - that of demonstrating the huge value of user-led groups in our society and fighting the cause for their survival. Our initial findings are summarised below.

User-led organisations are running a diverse range of activities, with many providing a variety of different services including peer support, training, consultancy, arts activities, research and advocacy. The benefits of mutual support, connection and solidarity is often life changing and sometimes life saving for members. However, many organisations are struggling to survive and facing closure. Key findings from the survey were as follows: 

  • Austerity, funding cuts and “the nonsense of the benefits system” is having a devastating impact on people’s lives. 

  • User-led organisations are overstretched and often running on the goodwill of volunteers and/or unpaid staff. 

  • Finding funding is increasingly difficult in the current climate and there is a lack of resources at ‘ground level’ – “where is all the supposed ‘new money’ going?”

  • Small user-led organisations are losing out to larger voluntary sector charities who involve service users, but are not user-led. 

  • Involvement often continues to be tokenistic despite the language of ‘co-production’ - the practice needs to change to match the language. Genuine co-production means sharing power. 

  • Commissioners and decision makers need to recognise the value and unique contribution that user-led organisations make to individuals and communities (eg. through the provision of holistic alternatives, talking therapies etc.)

  • We need to engage with people and groups who are the most marginalised. This should be a key part of the campaign as we move forward. 

  • Don’t lose sight of the user/survivor movement’s activist roots. Keep campaigning for social change! 

Read the full survey report here.

User-led Organisations gather to talk about the current crisis 

On 21 May over 40 individuals and organisations are gathered to discuss the current crisis facing User-led Organisations.

A briefing paper, produced in partnership with Shaping Our Lives, identifies our main areas of concern:

  • The loss of knowledge, peer support opportunities and advocacy through the disappearance of 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 BME and other marginalised groups.
  • Funding trends that exclude or severely disadvantage ULOs.

Read the summary notes from the event here.

Read the full briefing The Future of User Led Organisations here.

You can read the article User-led sector ‘faces threat of extinction’ published in Disability News Service 14.2.19