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 (be that local or identity-based) and often meet needs that no one else is meeting. They are often formed organically and at a grassroots level, therefore 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, running and managing 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 and organisational structure. NSUN has commissioned a series of video resources where people from user-led groups share knowledge that anyone can access as a starting point for understanding their options for growth.
Many thanks to Flexible Films for editing these resources.
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 at https://adhdaware.org.uk
- Twitter: https://twitter.com/adhdawareuk
- Facebook: https://www.facebook.com/adhdbrighton/
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 at http://www.expertbyexperience.uk/
- Twitter: https://twitter.com/expertbyexp
- Facebook: https://www.facebook.com/expertbyexperienceuk/
- Instagram: https://www.instagram.com/expertbyexperienceuk/
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 at: https://www.makespaceco.org/
- Twitter: https://twitter.com/makespace_co
- Email: firstname.lastname@example.org
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 at: https://linktr.ee/adhdbabes
- Twitter: https://twitter.com/adhdbabes?lang=en
- Instagram: https://www.instagram.com/adhdbabes/
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 at: https://www.artsandhealthhub.org/
- Twitter: https://twitter.com/artshealthhub
- Instagram: https://www.instagram.com/artsandhealthhub/
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 at: https://www.sisofrida.org/
- Facebook group (for UK residents): https://www.facebook.com/groups/sisofrida/
- Facebook page: https://www.facebook.com/sistersoffrida/
- Instagram: https://www.instagram.com/sisters_of_frida/
- Twitter: https://twitter.com/sisofrida
Other resources for user-led groups:
- Digital toolkit and funder database: the Charity Excellence Framework
- Knowledge-base for charities, social enterprises and community groups: knowhow from NCVO
- Money management information: The Social Change Agency
- Finding volunteers: Reach Volunteering