What Do User-Led Groups Need? (2020)

This 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.

By Mark Brown and Emma Ormerod

Background

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.

More broadly, it is set against a context of a hostile funding environment and a misunderstanding and undervaluing of the work of user-led groups do. User-led groups often do not see their experiences of mental distress and trauma as separate to other and multiple forms of marginalisation and oppression, and their work does not fit neatly into binaries defined by bigger institutions and mainstream narratives.

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.

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.

Ten hypotheses to increase the condition, sustainability and position of user-led groups in the mental health sector in England
  1. Practical, contextual support provided to user-led groups and organisations by a more established body attuned with the objectives and intentions of those groups/organisations could increase the impact of those groups
  1. A curriculum of knowledge and skills developed to be consumed at the relevant point in the growth of user-led organisations could remove some of the common stumbling blocks for such organisations
  1. User-led organisations and groups have specific needs in support and the provision of this support could help to grow the sector and increase impact and viability of those groups
  1.  Funding and support tailored specifically to user-led groups in mental health would increase capacity and impact of existing user-led groups.
  1. Support and funding for user-led groups that helps to build those groups on their own terms and in harmony with their own goals will generate more impact than funding that seeks to alter their goals or change their objectives.
  1. Those currently running user-led groups and organisations would benefit from ways to meet each other and collectively build a body of knowledge and mutual support and reflection
  1. Practical support for user-led groups around structure, governance, practice and strategy will improve effectiveness and resilience of those groups and organisations
  1. Funding to support, develop and sustain core activity in user-led groups will be more productive than funding provided for new projects or for expansion
  1. Supporting the creation and maintenance of healthy working environments in user-led groups and organisations will increase capacity, sustainability and resilience in the sector
  1. Funding developed with reference to the needs of user-led groups in mental health could be a significant market intervention
Conclusions

Conclusion 1: A better understanding of what user-led means

1.1. Our current understanding of user-led activity in mental health in England does not reflect what user-led groups do and need, and how and why they do it. User led activity might look and feel quite different to what funders and policy makers associate with ‘user-led’. More work is needed to map these activities.

1.2 We need to understand the historical context behind the way user-led activities have been categorised and understood, and incorporate new framings and understandings. Established taxonomies will not capture all user-led activities; but missing out the context will mean losing the heart of what user-led means in England.

1.3 User-led organisations have more in common with their communities than they do with statutory bodies or large charities providing mental health services. They are not replacements or adjuncts to NHS, local authority or charity services. Understanding the specific roles user-led organisations play in the mental health landscape will involve making the case for user-led organisations as a sector in mental health.      

Conclusion 2: A better understanding of how funding influences and changes user-led activity in mental health

2.1 If funders are interested in funding user-led activities in mental health, then funding processes, criteria and rationale need to be re-examined, in partnership with user-led groups.  It is not simply the case of ‘more’ funding being made available. The aims and expectations of funding need to be aligned with what user-led organisations need in order to do what they do.    

2.2. Understanding the role funding plays in defining what user-led means, and mitigating the dilution of the term. User-led is both hard and easy to define: hard to understand from the outside, and easy to recognise from within. When ‘user-led’ becomes a funding criteria, it changes this context and these dynamics. Not all projects or organisations which refer to themselves as user-led are in fact user-led. Equally, some groups might not talk about themselves as user-led or about their work as being about mental health.

2.3 Both funding and pro bono matching opportunities can create additional work for user led organisations, and can change who they are and can take them away from the activities they set out to do. Funding can act as a barrier or impediment to user-led activities, and the funding eco-system (including pro-bono work) needs to be re-evaluated through this lens.