World Mental Health Day – the crisis of user-led organisations

User-led groups can make life worth living

The National Survivor User Network (NSUN) is a network of groups and organisations led by people with lived experience of mental health difficulties. Suicide has touched many of us. We believe the work of our members is vital to making sure that people have lives that are more than just surviving.

For many of us who live with mental health difficulties, World Mental Health Day is a bittersweet experience. We live with the reality of distress, mental ill-health and trauma week-in, week-out, then for one 24 hour period we are drowned out by everyone talking about mental health then returning to their everyday lives while we get up the next day and carry on.  The focus of World Mental Health Day 2019, suicide prevention, has particular poignancy for many in the NSUN membership of groups led by those with lived experience. Every year we remember more of the people we have lost and whom we will never see again while many of us wrestle with distressing feelings ourselves.

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. 

We support community approaches to reducing deaths by suicide but our national network of user-led groups, a community of lived experience of mental health difficulty, is facing a crisis of its own.  Across the country, groups led by people with lived experience are disappearing through lack of funding, lack of understanding and lack of support from both the public and from funders and the public sector. 

NSUN’s primary campaign in 2019/20 is the value of user-led groups – demonstrating the huge value of user-led groups in our society and fighting the cause for their survival. Austerity has hit user-led groups as hard as it has hit the people who benefit from them.  NSUN estimates that about 50 user-led organisations that were previously NSUN members have been forced to close in the last year. This follows a net loss of more than 150 NSUN groups in the previous year.

Since launching the campaign more user-led groups around the country are under threat of closure. Possability People in Brighton and Hove, Liverpool Mental Health Consortium and Voices for All in Rochdale have all recently announced they are to close. Other user-led networks of Disabled people such as Shaping Our Lives and People First Self Advocacy have also reported on the alarming number of user-led and self-advocacy groups that have closed in their membership over the last few years. With the continued increase in the number of groups’ closures, many collectives of oppressed and marginalised people are under threat of disappearing, which can have devastating effects on group members. The Reigniting the |Space (for BME user/survivor voice) project was established to build a national forum to facilitate networking, information sharing and collaboration between racialised groups, and to sustain a collective political voice. This project started with mapping the current work mental health service users and survivors from racialised groups are involved in across two regions. A stark picture has emerged. Very few BME user/survivor led groups remain.

While many will, quite rightly, treat World Mental Health Day as an opportunity for celebration of good works NSUN takes a more solemn moment to remember those whom we have lost.  We also consider a future where, without more support, funding and nurturing, the vital, street-level painfully gained knowledge, skills and passion of the kind of groups we represent will be lost, too.  User-led groups are vital to making sure that the real views and experiences of those in distress are heard and even more vital in making the kinds of support that people need before, during and after a crisis.

User-led groups meet community needs others groups don’t

Often absent from the literature around the issue of suicide is the voice of people who experience suicidal feelings.  It is important that people who experience suicidal thoughts and feelings are genuinely and meaningfully involved in the development of suicide prevention work. User-led organisations are also key to developing more meaningful and relevant suicide prevention work within communities.

A substantial part of the suicide prevention debate is currently framed in terms of ensuring that people have better access to mental health services (particularly groups who are identified to be at high risk) and that there is better quality care, safe treatment and investment in community settings and acute hospitals. About a third of people who die by suicide have been under specialist mental health services in the year before they die, and two-thirds have seen their GP (Third Progress Report, 2017). It is therefore unsurprising that prevention strategies have tended to focus efforts on the provision of and access to mental health services and treatment. However, a significant number of people who die by suicide have had no contact with mental health services and the evidence around whether access to mental health services should be the foundation of a suicide prevention strategy is contested, particularly with regard to the value of inpatient beds and function of inpatient care.

Leeds Survivor-Led Crisis Service (LSLCS) provides out-of-hours support to people in acute mental health crisis. The service was founded in 1999 by a group of campaigning mental health service users who wanted to develop a non-medical, non-diagnostic approach to people in crisis outside of a clinical environment. Their survivor-led ethos means that everyone who works and volunteers at LSLCS has had their own experiences of mental health issues and they provide compassionate, person-centred support.

In Gloucestershire, Suicide Crisis runs an innovative, independent, user-led Suicide Crisis Centre. It provides a safe place for people who are at risk of suicide (accessible 24 hours a day) and a trauma centre that focuses on early intervention, providing one-to-one support for people who have experienced recent or historic traumatic events, to help prevent them going into crisis. The charity particularly wanted to reach people who had disengaged with mental health services because they were not working for them, and people who would never access statutory services in the first place and who needed something different. As Joy Hibbins, the founder and CEO of Suicide Crisis says:

In many ways, I set up the opposite of what I experienced under crisis services. We reversed the power imbalance of psychiatrists being in control. Our clients decide the kind of care they receive, how often they see us and when they are ready to leave. Instead of clinical distance, we openly care for our clients. That’s so vital in building a strong connection to “hold” the person and keep them connected to life. Instead of telling clients “It’s your decision” to end their lives, we actively and tenaciously work to protect their life. We do everything we can to help them stay alive – and all clients under our care have survived since we started in 2013.

The services of Suicide Crisis are responsive and have evolved to meet the needs of their clients. This has included recognition of the need to go to any setting where a person was experiencing a crisis eg. their home or other location, and also to set up an overnight emergency phone line for people who were at high risk. A high proportion of clients are men, despite the general perception that men are less likely to seek help. The charity looked at the things about their service that made it possible for men to access it. Reasons cited included being a service where you can walk in and be seen immediately, following initial contact by text messages, email or a phone call. Suicide Crisis is independent from other services, including the NHS. This independence is important to clients because many men said that they did not want to tell their GP that they were feeling suicidal for fear of having it on their medical records. Men who have used the service said that they prefer to be supported by a small team (usually just two staff members) and for there to be continuity eg. by being supported by the same member of staff who first assesses them.

How would I know a user-led group if I saw one?

Organisations such as Suicide Crisis and Leeds Survivor-Led Crisis Service often live hand-to-mouth and find themselves at the back of the queue when people think of charitable donation.  Often the work of such ‘user-led’ organisations is seen as supplemental not complementary to the aims of NHS and fall from the list of priorities of funders who privilege organisations that can offer large-scale, standardised services.

The phrase ‘user-led’ to describe groups is one that often confuses people. These are groups or organisations led by people who have direct experience of a particular issue, situation, circumstance or problem. These are people who have decided to get together to make happen things that charities, the public sector or the rest of the community can’t or won’t do. User-led groups are what people think of when they think of charities. 

Not every user-led group will describe itself as user-led. The term user-led is one that arose because there was a need to describe these groups as being different from the kinds of services run by existing mental health charities or the NHS. Some groups might describe themselves as survivor-led, others member-led or even patient-led. What’s important is that they’re groups of people with direct experience of the problems they exist to solve.

The user-led groups which make up NSUN’s national membership are managed, governed, organised or delivered by people who have experienced difficulties with their mental health in the past or who experience those difficulties at the moment. They’re groups or organisations that are set up and run by people who use their own experiences as the foundation for helping or supporting others. They’re literally our community helping itself by doing what services don’t or won’t do. Some of these groups are peer support groups, where the point is members supporting each other through good times and bad times. Some provide services to others that the public sector and charities won’t or can’t provide. Others exist to hold public services or charities to account or to support them with specific knowledge and expertise such as training, insight into people’s lives, research, promotion or other things that require strong community connections. Some exist purely to campaign. Others user-led groups do things that don’t look specific to mental health, like arts or media, but use the perspective of their members to make or do something that reflects life as they live it. Many user-led groups will do some of these things at once, while others will grow and change from one purpose to another over their lives. 

User-led organisations are often small, often under-funded and often struggling to stay afloat.  As the issue of mental health rises up the national agenda, user-led groups often get forgotten because they are too busy trying to help people going through difficulties and, because they begin from the lives of people who are already marginalised and discriminated against they lack the contacts and visibility to attract big name backers, mount media campaigns and catch the attention of decision makers. They’re too busy trying to make the difference their experience and community tells them needs to be made.  

However user-led groups or organisations chose to describe themselves, they are the direct expression of the desire of people with lived experience for a better, kinder, more equal world where everyone can flourish. In a country where in living memory the wishes and views of those who live with mental health difficulties were discounted; or where people lived in isolation and shame cut off from others who could provide kinship and fellow feeling, user-led organisations put people’s experience at the centre not the periphery of mental health.

What difference do user-led organisations make?

User-led organisations were different to other kinds of mental health service or group. In NSUN’s most recent members survey, a number of user-led organisations said that their organisation had been life saving for members and cited quotes or evidence from individuals to that effect. This included, but was not limited to user-led groups who focused on suicide prevention: 

A number of people who come along say it is the only thing keeping them alive at the moment.

This is a group that literally saves lives. We know that because the guys who come have told us so on a number of occasions. The way we do mental health support is radically different from pretty much everyone else and I think it’s that difference.

Many user-led groups discussed the benefits of mutual support and connection with others who had been in similar situations. This helped to reduce feelings of isolation, created a sense of solidarity and increased wellbeing for those attending:

“Being with people with similar experiences and understanding is a great leveller and helps people connect.”

“People find it hugely supportive to be with others which gives a sense of belonging and enables us all to feel less alone”.

“People say it keeps them well and out of hospital and gives them hope”.

What do user-led organisations and groups need?

We are living at a time when it has never been more difficult to set up a user-led organisation. In many places, the loss of a user-led group means that it is unlikely that other user-led groups will come into existence to replace it. A number of groups responding to the survey are struggling to survive in the current climate where many services are facing cuts and several have recently lost significant sources of funding for their organisation. Many organisations stated that cuts and poor finances had led to loss of paid staff, offices and suitable venues to hold meetings or run activities. But whilst lack of funding and cuts were leading to staff losses, lack of resources and reduction in service provision, many groups said that demand for their services was increasing as was the pressure on them to do more for less:

Demand constantly outpaces capacity, so we are short of funds and even shorter on people who can be supported well enough to support others. Insufficient resources to meet the need and a stretch that makes it hard to make time to fundraise.

Core services need more sustainable funding, we have had 50% increase in referrals over the past month in 2019. No additional monies have come with those people, but yet we manage to support them with our dedicated team of volunteers.

Organisations fearing closure were frequently concerned about how this would impact on the mental wellbeing of individuals including an increased risk of suicide:

We have made an exit plan and regularly review this. It is very difficult to focus on the future in these circumstances. People who used to get a service from us feel unsupported and bereft.

Worried we will have to close and people will become hospitalised or end their lives as a result.

Many will have died and no one would know.

In an environment where funding is hard to find and cuts to services are plentiful many organisations are surviving purely on the goodwill of people who care about their groups working on a voluntary basis:

The organisation is now in the main un-funded, reliant on the goodwill of volunteers. […] Challenges are overall many and varied – imagine a ‘flag-ship’ national charity in any ‘sector’ whose activities rely entirely on voluntary goodwill and commitment to its ’cause’, and you’ll realise just how dedicated, and important this organisation is to people who have been/are in contact with it over near-three decades. And, the extent of the task required to keep it going, and to eventually really flourish again.

We have no staff and everything we do is run by people with their own lived experience on a voluntary basis. The people running our sessions now are the people that have come along to attend the sessions over the last year or two. Over time approximately a quarter of the people who come along to the charity will go on to help run it, this has worked well for us over the years. […] more of the new people coming along are in or closer to crisis than we’ve ever seen before and we’re not experiencing the same flow through from attending the sessions to running them as we have previously. That’s fine because we would never expect anyone to help out unless they felt ready. It has just meant that it has put more on those still running the charity and means we will have to adapt again.

Running an effective organisation on limited funds frequently involved an emotional and/or financial cost for its leaders. For some, being a ‘service user’ increased the pressure to keep quiet about the challenges they were facing:

I have concerns about how my own mental health impacts upon the service. I am the hands-on manager as well as the CEO. I have a challenging mental health condition (bipolar disorder). We all feel the charity is quite reliant on my being well. It is hard to find cover for me when I am unwell – our team works together but it does create challenges. I think this is something that needs to be acknowledged. We are of course reluctant to voice this very publicly because it could tap into “concerns about having people with lived experience running services” i.e. “what happens when they are ill and will they be less ‘reliable’?” The kind of things we hear sometimes voiced about people with lived experience.

Some user-led groups are continuing and will continue to survive, but this may be at the expense of leaders and volunteers facing exhaustion and burnout (and potentially not asking for or receiving the support they need because of their ‘service user’ status).

A number of organisations felt that funding difficulties were connected to the attitude of commissioners and others in power who placed little value on user-led groups and favoured clinical services or organisations who were larger and/or shared similar values to themselves:

It has never been harder. Last year we lost a large local authority contract to a large advocacy organisation based in London. Our local authority placed little if any value in the fact that we established, developed and have maintained user-led mental health advocacy or the social value of being local with knowledge, experience and expertise.

It is becoming extremely difficult to find funding. Austerity means that any money available is going into clinical services & the value of user-led services & preventative work is becoming less valuable to those with money & power.

What can be done?

Funders need to look at the way funders regard mental health user-led organisations. Often the kinds of small, responsive organisations that really meet the needs of people living with distressing feelings and difficult challenges are too small to interest funders interested in scale, too local to interest funders interested in national impact and too specific to interest funders not committed to mental health. Mental health is seen as a topic, rather than a community. Funds for fighting stigma, while valuable in themselves, will not stop the people we care about suffering or falling into despair.

In May 2019, NSUN, funders Lankelly Chase and Shaping Our Lives organised a crisis summit drawing together charitable funders and representatives of user-led groups and organisations which explored many of these issues.

NSUN’s vision isn’t to create another massive organisation that speaks with only one voice.  We want to be the platform from which many voices and many experiences can speak and the host through which many people can find each other to share, learn and grow.

User-led groups in mental health don’t need the permission of mental health services, local councils or larger charities to exist, but they do need their support. The increase in interest in mental health has led to an explosion of activity. There will be groups across the country with new ideas and new understandings of what needs to be done. NSUN extends the hand of support and membership of a national network to any groups of people for whom lived experience of mental health difficulty and distress is their common reason for coming together.  We believe together we’re stronger.

 Innovation in mental health doesn’t just grow in big organisations. It grows through the meeting of people’s needs and the fulfilling of people’s dreams through concrete actions in people’s lives and the communities they live in. NSUN will champion user-led groups and try to unlock both understanding and support to make it possible for user-led groups to both survive and thrive.

If you believe that living with mental health difficulties, distress or mental ill-health should not bring with it exclusion, isolation and inequality and believe that there need to be places and opportunities in the community for people to feel safe and to find their way to the best possible life, we want to help you find your local user-led organisations either to join or to support.

NSUN wants to see a time when no one has to face their darkest hours alone and where people who live with difficult and frightening thoughts and experiences can truly shape the support they and others receive. We don’t want the experience of mental ill-health to be one of hopelessness, despair and desperation. We want a better deal for people who live with mental health difficulties and the groups and organisations we start and run ourselves.

We need your help. Not because people who live with mental health difficulties are helpless, but because not enough people listen when people with lived experience have answers to the problems that other people going through. User-led organisations need to be cherished, supported and nurtured. The last ten years have not been kind to people who live with mental health difficulties day-in, day-out. Our community is hurting. No one should go through that alone.  We know what happens and what it feels like to have nowhere to turn and what it feels like to lose friends, colleagues and family members.

Every day is a mental health day for the people who run and use services and groups created by people with lived experience. We’re there when other people get to go home or focus on another big issue. We need you to find ways of supporting your local user-led groups. We have some ideas for how you can do that but yours will be better. The worst poison for mental health is feeling like no one cares about the problems you face. 

User-led organisations need you to care.

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