The user-led organisations in our network range from unconstituted mutual aid groups and collectives to small charities or social enterprises. They carry out work to connect, campaign, and improve the mental health of their communities (whether local or identity-based) and often meet needs that no one else is meeting.
User-led groups are often formed organically and at a grassroots level, having to learn as they go when setting up and growing. They often rely on relationships with similar organisations to share knowledge, so luck, varying levels of prior experience, and founding individuals’ pre-existing networks play a large part in helping them develop and tackle the “hidden curriculum” (addressed in our 2020 research) of forming and running an organisation.
There is no “how-to” guide for setting up a user-led mental health group, and the needs of each group differ greatly to one another. However, there are several areas of support that are needed and shared amongst groups, such as funding, safeguarding, and organisational structure. We have pulled together various resources below, including our commissioned series of video resources where people from user-led groups share knowledge that anyone can access as a starting point for developing and sustaining groups.
This page contains:
- Signposting: resources & sources of support for user-led groups
- Self-guided visioning workshop & guide for food/mutual aid projects
- Video resources by & for user-led groups
1. Resources & sources of support for user-led groups
NSUN resources
- Our page of resources specifically for user-led groups that run peer support spaces
- Our page of resources specifically for groups doing service user involvement/influencing
- Our page on funding for user-led groups
- Our page outlining how we can support members’ user-led policy/campaigns work
- A guide to online event safety and conduct management for user-led groups
- Reimagining Safety Beyond Safeguarding
- We run events, including training, for user-led groups – visit our News & Events page
- Our reports may be useful – visit our Publications & Research page
- We often share new resources for groups via our members’ bulletin – sign up here
External resources/services
- Disability Rights UK’s Disabled People’s Organisations support hub: guidance notes on areas such as funding, governance & recruitment
- The Charity Excellence Framework: digital toolkit & funder database
- NCVO’s support for small charities & voluntary organisations web area: guidance/resource pages & small charity helpdesk
- The Edge Fund’s resources page: fundraising, campaigning & organising
- The Social Change Agency: money management
- Charity Commission webpage: template charitable constitutions
- Co-operatives UK webpage: model governing documents for co-ops
- VCSE support/infrastructure organisations: these exist regionally, e.g. Manchester Community Central, providing resources, templates & toolkits on issues such as governance, finance, safeguarding & GDPR. Local CVS (Council for Voluntary Services) organisations may also be of use. You can find local infrastructure organisations via NAVCA’s website
2. Self-guided visioning workshop & guide for food/mutual aid projects
Self-guided visioning workshop for user-led groups
This resource was created as part of our 2024 project focussing on mapping resilience and sustainability in user-led groups.
Amy from The Teapot Collective takes you through our visioning workshop for your user-led group. You can take part in this workshop alone, or with your fellow organisers! We hope this workshop helps you to build your resilience, and bring your user-led group to where you want it to be.
In the workshop you’ll explore where you want your organisation or user-led group to be in the future, and what steps you’ll take to get there. We completed the exercises in this video with five London-based organisations and we’ll be sharing examples of what came out of our time together to support you in coming up with yours.
We’ll move through four parts:
- Visioning: visioning can build our resilience. Dreaming of the world we want to exist can create and maintain the hope we need to keep going. In this part you’ll work out where you want your user-led group to be in the future.
- Headlines: write the newspaper headlines you’d need to see before your vision becomes a reality.
- Identifying who we need: what partnerships or collaborators do you need to fulfil your vision?
- Zooming into your focus: identify what steps you’ll take for the next twelve months in order to make your vision a reality.
3-step guide for food and mutual aid projects
This is the second resource created as part of our 2024 project focussing on mapping resilience and sustainability in user-led groups.
This guide was made in collaboration with Spring Community Hub (a Southwark-based charity which aims to address the root causes of food poverty and food insecurity), The National Survivor User Network, and The Teapot Collective.
The support offered by user-led groups working in and around mental health often extends from peer/emotional support to all things practical, such as mutual aid and food provision. This 3-step guide is for groups working on such projects to use when doing local community development work.
It could also be adapted more broadly to support those who are looking to start — or have recently started — a new project, or feel that your existing project could be more embedded within the community. This guide is also for anyone who believes that working together brings us closer to living in a world that’s socially just.
The three steps within this short guide are:
- Capture: develop a community resource map.
- Connect: visit local projects and community spaces.
- Co-create: work together with local projects and the people you aim to support.
Alternatively, click here to download the guide as a Word document.
3. Video resources by & for user-led groups
ADHD Aware on being a volunteer-run user-led organisation
ADHD Aware is a volunteer led Brighton based organisation that runs peer support groups for adults with ADHD. They have helped people live happier lives and get access to the numerous services made available to people with ADHD so they can function and thrive with their neurodiversity.
In this resource Dave Clark talks about his experience of being part of a volunteer led organisation, the peer support they offer, how to support group members and the pros and cons of volunteering.
- You can find out more about ADHD Aware via their website by clicking here
- Follow them on Twitter here
- Follow them on Facebook here
Expert By Experience on maturing as a user-led organisation
Expert By Experience is a volunteer-led anti-imperialist platform that creates dialogue around mental health in South Asian communities through an intersectional and critical lens. Their aim is to contextualise mental health in relation to structural, historical and cultural inequalities.
In this resource, Taimour Ahmed, the founder of Expert By Experience, talks about what groups could focus on as they mature as an organisation using EBE’s journey over the past 2 years as a case study. He explains some of the challenges over the past two years, their development, how their communications strategy has changed, their approach to funding and more.
- You can find out more about Expert By Experience via their website by clicking here
- Follow them on Twitter
- Like them on Facebook
- Follow them on Instagram
Make Space on safeguarding as a user-led organisation
Make Space is a user-led collective. They create spaces for more generous, nuanced, and caring ways to support those with experience of self-harm. They hold peer support spaces, equip people to support those with experience of self-harm, and create resources and research.
In this resource about safeguarding for user-led groups, Veronica, Courtney and Bathsheba discuss safeguarding in the context of self-harm at Make Space, and how as an organisation, they navigate with the complexities and nuances of acting in this space as well as creating safety and care for the people they interact with.
- You can find out more about Make Space via their website by clicking here
- Follow them on Twitter
- Click here to send them an email
ADHD Babes on finding and engaging with your community or audience as a user-led organisation
ADHD Babes is a support group for Black women and Black non-binary people with ADHD, where clinical diagnosis is not needed. They hold sessions for support groups, online open spaces, events and more.
In this resource, Vivienne Isebor discusses ways you might find, grow and engage with your community or your audience through networking and discovering overlapping features. She also describes how ADHD Babes interacted with their own community and the steps they took to do so alongside any challenges.
- You can find out more about ADHD Babes via their website by clicking here
- Follow them on Twitter
- Follow them on Instagram
Arts and Health Hub on organisational structure for user-led groups
Arts and Health Hub are a London based not-for-profit organisation, acting as a network of artists & cultural producers in the arts and health sector. They run events and workshops, offer peer support, and manage an online community of likeminded artists.
In this resource, Daniel talks through the process of setting up the organisation, including self-financing at the beginning and developing the organisational structure through registering as a CIC (Community Interest Company) as opposed to a charity, while considering sustainability and strategic direction. Daniel explains that registering as a nonprofit organisation opened funding doors for them to have paid staff, and created partnership working opportunities.
- You can find out more about Arts and Health Hub via their website by clicking here
- Follow them on Twitter
- Follow them on Instagram
Sisters of Frida on structure, governance, and ways of working for DPOs
Sisters of Frida CIC is an experimental and intersectional collective of disabled women. They want a new way of sharing experiences, enabling mutual support and creating relationships with different networks, acknowledging that barriers and multiple discrimination have not changed and there is a struggle to have voices heard as disabled women. They recently published a paper on the impact of COVID-19 on disabled women: https://www.sisofrida.org/the-impact-of-covid-19-on-disabled-women-from-sisters-of-frida/
In this resource, Eleanor talks about Sisters of Frida and their journey of setting up and sustaining themselves as a DPO (Disabled People’s Organisation), also touching on processes for funding, governance and having a steering group for CICs (Community Interest Companies).
- You can find out more about Sisters of Frida and contact them via their website by clicking here
- Join their Facebook group (for UK residents)
- Like their Facebook page
- Follow them on Instagram
- Follow them on Twitter
Let’s Talk About Loss on becoming a registered charity
Let’s Talk About Loss supports young people aged 18-35 who are bereaved. Whoever you have lost, LTAL create a safe space to talk about that loss in a fun, relaxed environment. They offer peer support to help people talk through their grief and loss and find friends that understand.
In this resource, Beth talks about becoming a registered charity, the process of getting there, and why a user-led group might want to become a charity. She discusses the benefits and drawbacks of this transition with there being more opportunities such as grant funding and trust for charities, but also extensive admin and requirements to adhere to such as governance, finance and accounting. Watch to find out more about your role as your group status changes to a charity, and more.
- You can find out more about Let’s Talk About Loss and contact them via their website by clicking here
- Like them on Facebook
- Follow them on Twitter
- Follow them on Instagram
Sangini on funding and grant applications for user led groups
Sangini is a Black and minority ethnic (BME) led, multicultural women’s arts organisation based in South Shields, Tyne and Wear. They seek to improve the quality of women’s lives by increasing their physical, mental and spiritual health through arts, educational, creative and participatory activities that also celebrate cultural diversity. Their previous projects have had a positive impact in encouraging women from different communities to engage in educational, creative and participatory activities by providing support and encouragement thereby removing the social and cultural barriers.
In this resource, Padma talks about getting funding to develop your group, including tips and suggestions on grant applications for smaller organisations. Some of these tips include finding the right funder, going for smaller grants, planning far in advance, collecting a combination of information and statistics on your group, as well as looking into to budgets, manageability and much more.
- You can find out more about Sangini and contact them via their website by clicking here
- Follow them on Twitter
- Like them on Facebook
Many thanks to Flexible Films for editing these video resources.