User-led organisations are the people’s story of mental health

Mark Brown
Oct 24 · 11 min read

The following is the text of a speech delivered by Mark Brown to the National Survivor User Network’s (NSUN) AGM in York on 24th October 2019.

People love the idea of small local organisations that grow from people getting together to solve the problems they face. It’s often what people mean when they talk about charity, not big massive distant organisations but small, people sized ones. But somehow that enthusiasm doesn’t extend to organisations and groups where the community is those who live with mental health difficulties.

The topic for today’s AGM is The Crisis of User-led Organisations. What’s the crisis? They’re disappearing and not enough people care.

On World Mental Health Day earlier this month, NSUN defined what user-led groups are and why they’re important: “NSUN believes that groups led by people with mental health difficulties, often called ‘user-led’ groups or organisations, have a significant role to play in supporting others going through the bleakest and most difficult moments of life. We believe that the groups that make up our network have hard-won knowledge and skills that contribute not only to helping people to stay alive but also to making life worth living. We believe in being there for each other and developing groups and services that meet our own needs, on our own terms.” User-led organisations are the wishes and desires of people who live with mental health difficulties put into action.

Every year new people join the world of mental health. Some because they have difficulties for the first time. Some because they qualify for their profession. Some because a campaign catches their eye or they become aware of a particular idea for the first time. Too often, though, this means that the space concentrated on is the beginners space, the first day of school space, the passing on of very basic information and knowledge. The emphasis of the last decade has been on starting conversations about mental health. But people want more than that. They want community, they want support, they want opportunities, they want things in which to be involved. User-led organisations have been having conversations about mental health for decades or more. I’ve been doing mental health stuff since 2006 and in comparison I am a little baby.

An entire generation of younger people who experience mental health difficulty and distress have grown up in an age of activism and in the spirit of do-it-yourself, but often the links between them and user-led groups is not strong. Their energy is bringing about a renaissance in mental health related publications, websites, art and campaigns and their organising is bringing mental health to other equality struggles. User-led organisations are vital in making sure that collective knowledge and experience can be passed on and not lost. More younger activists than ever are up for the idea of harnessing new forms of funding and organisation to make things happen.

On this years World Mental Health Day, it was noticeable that the number of voices saying that awareness isn’t enough rose in volume and prominence. People want things to happen that actually help people when they are going through stuff that’s difficult. People want things that are real and are increasingly wary of big organisations suggesting big solutions.

Together, user-led organisations tell a different history of the last ten years. When some argue that the UK is booming and that living standards are rising and potential for happiness is improving, the last decade for people with the kind of mental health difficulties that don’t go away has gotten worse. Fewer services, less opportunities, massive reduction in benefits, increased hate crime, political and social instability. All of these have affected our people in ways specific to our community within a community. Our collective history needs to be heard. Together, user-led organisations tell a different story of today.

It feels like user-led organisations led by people with lived experience of mental health difficulty, distress and trauma are as close to being trendy as they ever have been, so why are they in crisis and why does that even matter?

Every time NSUN carries out a members survey it finds that more member organisations have closed. Funding that might once have been there is no longer there. Successive governments who have claimed that they wished to put community, self-determination and voluntary action at the heart of what we are as a country have ignored that experience of mental health difficulty is both a community and often a community within communities. Services that have sung high hymns to the idea that independent organisations of self-organised people who live with mental health difficulties are vital have consistently refused to provide the support and respect such organisations require to grow and evolve.

Again and again, funders and services have used user-led groups as their laboratories and their ideas factories before taking what worked in-house and leaving those who created it without resources and funds to keep creating and continue delivering. It was touch and go whether NSUN would survive but it has and it’s been a privilege to have been witness to the work it has taken to secure NSUN’s future.

The cost of the loss of user-led organisations can be measured in the services, support and opportunities lost to those who need them, but it can also be measured in the loss of people from the field. Many user-led organisations are surviving because people are working the arse off to keep them going, often when dealing with their own difficulties unsupported. People burn out, run empty, and then for their own wellbeing have to move away from the things their heart tells them are the right thing to do and from helping people they really care about.

We talk about the staffing crisis in the NHS and everyone accepts that this is an issue of funding and training and recruitment. When we talk about the crisis of person power in user-led groups people blame us as if we just weren’t trying hard enough to make things work. Doing anything is hard, doing things in the kinds of conditions that user-led organisations do them is the art of making the impossible possible.

User-led groups are far more than just a different way of delivering services. They are a collective story not of mental health services, or mental health professions, or mental health treatments but mental health lives. The history of user-led organisations is a people’s history of mental health.

User led groups are the unbroken thread of memory, experience, ideas and knowledge of life lived with experience of distress, trauma, mental health difficulty and difference. Collectively, they are the space where our own shared understanding of the world and its injustices and its possibilities for people who experience mental health difficulties has grown, developed, sprouted and budded in unexpected ways, driven down strong roots and grown great fruits. User-led organisations collectively are the story of us, through our own eyes and told with our own voices.

Ideas about mental health change. Policy about mental health changes. Services change. Structures change. For anyone who has been involved in anything related to mental health, the experience of seeing commissioners and managers and even whole services themselves come and go isn’t a novel one. Big charities appoint workers who might stay in post for a year or two. Researchers and think tanks come and go. Entire ideas rise like islands from a stormy sea, attracting settlers and colonisers, before sinking without trace a few years later, hangers on clinging to the last remaining dry ground. Remember social inclusion? Parity of esteem? The big society? Coproduction? Involvement? Social prescribing? Ideas influence policy and policy influences practice and then things move on and every forgets and moves onto something else like taking teenage posters down from the wall and replacing them with new ones. Charity professionals move onto different charities. Initiatives end, pull out and then leave behind nothing. Governments change. Economies change.

When a user led organisation ends, goes under or has to stop, what is lost is not just the service or support that it delivers to others, although that is important. What is also lost is the sum of the intelligence, the knowledge, the experience of what the world is like for the people who make up that group and have passed through it. Too often, the choice for those of us who run, work for or use user-led groups when they end is not to take our ideas, experiences and knowledge to another organisation to progress them. In many places there are no other organisations open to lived experience or open to beginning new projects or services. Instead of being able to carry on the work, the choice forced upon people is to stop struggling and to finally accept that the wider world didn’t care enough.

If that link between past and present knowledge is broken we cease to be a community and end up again as individuals defined only in terms of our difficulties or by our use of services. If there is nothing that can keep the flame burning then the fire needs to be started again.

The fight that NSUN has had to secure the funds to survive is not a different fight from the struggles its members face to survive. The first was convincing funders that lived experience of mental health difficulty is just that — the experiences of real people having real lives in a country that does not care as much about them as it does other people. Lived experience isn’t just an additional special sauce for public services and charities to add to the recipe of service improvement, it’s real people’s lives as they live them. The second hurdle was convincing funders that mental health difficulty and distress isn’t just a medical issue or a policy issue, but an actual set of circumstances that can marginalise people and push and push them into the shadows and cut them off from having the life they wish for and deserve. There are injustices in the way our country regards people with mental health difficulties that can only be expressed by amplifying the experiences, dreams and wishes of those that experience them.

The third struggle NSUN overcame was convincing funders that there is so much potential for user-led organisations to grow and build new things and make new things happen but that this potential is been starved by the lack of funders and lack of understanding from the general public of why user-led organisations are different. The fourth was that without user-led groups and what user led groups might become, people living with the realities of mental ill health and distress have very little protection from falling between the cracks of what others have decided to provide and very little voice in the wider debate about what our country is and what it should be.

The fifth piece of the case made by NSUN established in the minds of funders that user-led organisations can be anything they want to be, not just an adjunct to public services. As long as people with lived experience are in control of them, user-led organisations can do anything they choose to do and it is still an expression of the hopes, dreams and needs of those who live with the reality of mental ill-health. A user-led group could be a crisis cafe. It could be a theatre group. It could be a history project. A film collective. A benefits advice drop-in. A research group. An advocacy service. A training consultancy. A group of people getting together for a cuppa and to set the world to rights. It could be *anything*. Being user-led doesn’t limit the activities that a group can do. What limits what user-led groups can do is the lack of time, resources, support and nurturance to find the vision and the means to grow and develop.

A further challenge for NSUN was getting funders to see that if NSUN were to disappear there would be nothing that would replace it to occupy the same space. If iNSUN went, then it would be gone. What might have grown from the collective soil would never flower again; what connections and relationships that might have been forged would never come into being. As with user-led groups, the possible future avoided is a one where what had already been built was lost forever.

The final way in which NSUN made the case for its existence was to focus on the future; on what there was still to be done and the potential of user-led organisations to grow and develop. There are many things that user-led groups could do in future to make the lives of people with mental health difficulties better given the right circumstances and a shift in perception of their potential role.

I keep thinking of the phrase “The crisis consists precisely in the fact that the old is dying and the new cannot be born; in this interregnum a great variety of morbid symptoms appear.” The old world of considering mental health difficulty as purely a medical issue is dying, but the new world where people with lived experience are at the forefront of making new things is not yet within the vision of enough people to secure the resources and the respect it deserves.

In between these two worlds lies great possibility and also great despair. User-led organisations are often in the intolerable situation of being unable to secure the funds and support they need to be able to prove to those with funds and resources to share that they are doing things worthy of being funded and supported. While there are some established user-led organisations and local networks that have achieved amazing things; for many others the potential lies in what they could do given the space to breath and grow.

There is so much that still needs to be done and so many things people need right now that it can be terrifying to even look at what might be possible in future. When I’m scared I feel paralysed, afraid to move forward and afraid to move back. User-led organisations are in crisis but I’m trying to fight that feeling of being frozen to the spot because I believe the future is made now.

I’m not going to lie, things are tough and getting tougher. User-led organisations are where we hold our history and our knowledge and the day to day hope of being there for each other. A network distributes that knowledge and keeps it safe collectively. A people without a history don’t have a future, because hope comes from seeing what has changed over time and what is changing in the present.

Together in this room in York and in other rooms and other communities and in the dreams and hopes of people trying to make things; the future of user-led organisations is being made. People who live with mental health difficulties and distress are tired of coming second, or third, or last. What we want is a better, fairer world. We shouldn’t forget what people like us have already done, and we shouldn’t be quiet about what we’re doing now.

User led groups grow from our desire to make things better for each other. The crisis isn’t of our making but our response to it is. And we owe to ourselves, the people who came before us and the people who will come after to not give up now.

And we won’t.

@markoneinfour

Mark Brown

Written by

Mark Brown edited One in Four, mental health mag 2007–14. Does mental health/tech stuff for cash (or not). Writes for money. Loves speaking. Get in touch

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