What Do User-Led Groups Need?

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This report, by Mark Brown and Emma Ormerod, is the result of 19 interviews commissioned by the National Survivor User Network (NSUN) with community organisations and groups using lived experience to deliver mental health support in England. These interviews took place in August 2020.

The objective of the research was shaped by NSUN’s role as a national network of user-led mental health organisations and its experience of delivering a micro grants programme to support user-led community groups and organisations to deliver mental health related activity in the context of the first national pandemic lockdown in 2020. The research looked to understand what challenges user-led mental health organisations face and to explore what might help user-led organisations delivering mental health support to meet their aims and sustain and develop their activities.

This report contains a number of observations from the interviews carried out and a number of testable hypotheses for future action.

This work was funded by a grant from City Bridge Trust.

With huge thanks to our interviewees:

Ursula Myrie, ADIRA
Yetunde Adeola, African Caribbean Forum Kent
Jordan Fahy, Bury Involvement Group
Tania Edge, Capital Project
Kimberly Myhill, Equal Lives
Beth Ingram, Hearts and Minds
Alisdair Cameron, Launchpad
Veronica Heney, Make Space Collective
Alan Hartman, Manchester Users Network (MUN)
Salma Lokat, Mashriq Challenge Resource Centre (MCRC)
Angga Kara, Men Up North
Mish Loraine, North East Together
Sue Adams, North Tyneside Disability Forum
Rachel Pearson, Rise and Shine Lancashire
Barthelemy Nguessan, Sareli
Teresa Benton, Supporting Women & Activities Network (SWAN)
Shuranjeet Singh, Taraki
Hannah Schwartzman, Waltham Forest Hearing Voices Group
Joyce Kallevik, Women in Secure Hospitals (WISH)

Key findings:

  • User-led organisations carrying out work to support the mental health of their communities are community organisations serving the needs of their communities and as such often have more in common with their communities than they do with statutory or large charity provided mental health services.  They are from their communities, not additions to it.

  • User-led organisations and groups carrying out work to improve the mental health of their communities can often be better understood as ‘under the radar’ or mutual aid groups than as replacements or adjuncts to NHS, local authority or charity services.

  • User-led organisations and groups can feel that their target cohort is too specific to attract the attention of funders interested in whole community change, even when the size of the funds required to meet the needs of that cohort are minimal. Making a big change to a small number of people does not feel like an easy sell.

  • User-led organisations and groups often have purposes or aims which are specific both to the needs of their community and specific to the improvement or support of mental health.  The combination of these specific focuses can make the securing of useful advice and funds for activities frustrating.

  • User-led organisations and groups vary in their requirements for resources and funds, but many struggle to secure core resources and funds to deliver what their community needs.

  • Smaller user-led groups and organisations rely upon relationships to deliver their mission, both within their own group, with the people within their community they support and with their wider community. External pressure to move away from their core aims can put these relationships at risk.

  • User-led groups and organisations are often doing what no other body or service is doing in their community.  This direct support is a form of systems change, where local or national systems are currently failing to meet the specific needs of their community.

  • User-led groups and organisations that have grown from racialised or marginalised community may define themselves and their lived experience in terms of their community experience primarily, even when their activities support the mental health of their community.

  • User-led groups and organisations often exist at the hard end of the social determinants of mental ill-health and may define their mission more in terms of alleviating the results of those social determinants rather than in terms of theories of change related to the result of reducing negative social determinants.  They are making change in the here and now.

  • User-led groups and organisations delivering support and opportunities to improve mental health can feel outside bodies, including funders, do not understand what is specific about their work and the context in which it takes place and as such struggle to communicate the value of what they deliver.

  • User-led groups and organisations may feel themselves to have few local allies or peers with which to share, discuss and develop ideas and partnerships, especially where the mental health elements of their work are not widely recognised as important within their wider community.

17th December 2020