Mental health user-led activity as autonomous community action

The following is the text of a lecture given to Goldsmiths College, University of London Social Entrepreneurship MA students via video conference on 8th June 2021.

Traditional approaches to mental ill-health have focused on either benign or malign paternalism. Until relatively recently in the UK, the experience of mental ill-health was either something that was hushed up or, when it could no longer be hushed up, something that would lead to a variety of different services or legal devices by which others were considered better placed to make decisions for those who were unwell. When someone passed into this realm, they could expect, unless they were very lucky, that the rest of their life would be lived in one way or another under the direct care of others. Long stay hospitals were common.

This is not the world in which we live now. The process of deinstitutionalisation, begun in part by racist’s favourite Enoch Powell in his other famous speech, means that fewer people each year will have the experience of a long time spent within a mental health hospital ward:

“This is a colossal undertaking, not so much in the new physical provision which it involves, as in the sheer inertia of mind and matter which it required to be overcome. There they stand, isolated, majestic, imperious, brooded over by the gigantic water-tower and chimney combined, rising unmistakable and daunting out of the countryside — the asylums which our forefathers built with such immense solidity to express the notions of their day.”

People often fulminate about the effect of Care in the Community, often portraying it as ‘no care and no community’ but the change envisioned by Powell when he said in 1961 in his famous ‘water towers’ speech has happened.

Each year more people experience difficulties with their mental health and, unlike one hundred years ago, they are not exiled to some place at the edge of town to be used as a threat to scare children who were naughty. More people than ever live with mental ill-health as a chronic condition; something that has lesser or greater effect on their lives on any given day but which is always a presence. In wider discussion of mental ill-health there is much talk of prevention and cure, in science and service delivery and treatment. There is much less discussion of what it means to live as a member of a community while also experiencing mental health difficulties.

Mental ill-health is an experience that is situated in people’s day-to-day lives. It forms part of who they are in the world. It is a biographical experience and also a political, social and economic one. It is very easy to assume that the experience of mental health difficulty is what shapes the services and interventions available to those who live with these experiences, but in practice this is not the case. The mental health services which exist have not yet caught up with the idea that it is possible for people within communities to develop solutions and interventions separate and distinct from those provided by the NHS and by charities.

If we are lucky, life is long. Interventions and services, on the other hand, are increasingly short and episodic. Where statutory services provide interventions and support intended to resolve or mitigate difficulties, the business of living life to its best is very different from seeking treatment.

My interest, and the subject of this lecture, is the ways in in which people who live with mental ill-health over long periods of time access the care and support that they need and, more than that, situations where people who experience mental ill-health over time develop and deliver their own solutions to challenges that they and others face in day-to-day life.

Last year I did a research project for the National Survivor User Network (NSUN) exploring what community groups and organisations led by people who live with mental ill-health, distress and trauma need and how groups like this understand what they do and where it fits in.

The backdrop to this work was NSUN’s own experiences during the pandemic of running a small grants programme to help ‘user-led’ organisations quickly put in place activities or services to support the mental health of others in their community. In this context, ‘user-led’ means organisations or groups that are managed and/or delivered primarily by people with direct, lived experience of the issues that their work seeks to address. It may seem obvious that activities or services that help others with their mental health or the difficulties and challenges living with mental health difficulties might cause would be run by people who had experienced similar, but this has not always been a broadly recognised point.

In the UK, mental ill-health, distress and trauma are mostly seen through a medical lens. In 2009, the Social Care Institute for Excellence defined a user-led organisation as one “that is run and controlled by people who use support services including disabled people, people who use mental health services, people with learning disabilities, older people, and their families and carers.” In 2021, such definitions, while still useful, do not always capture how the broader issue of mental health has changed and evolved in the real lives of people and communities. Due to cuts, eligibility criteria and changes in the way that ‘support services’ are delivered, many people who might benefit from support are not currently, or may never have been, users of ‘support services’.

People’s experience of need is not defined by whether they are currently being provided support by statutory or large charity services. Policy, funding and academic discourse in the UK has tended to focus upon user-led groups and organisations in this context. What NSUN found in running its small grants programme was that the term ‘user-led’ was not as comfortable a fit for the kinds of organisations that were applying for grants. The groups and organisations were not, on the whole, organisations formed by people who were users of a particular service, but autonomous groups, organisations and charities that had come together to do something about meeting the needs of people in their community who experience mental distress, trauma or mental ill-health.

Where do user-led groups fit in?

The idea of mental health and what should be done about it remains a heavily contested area. The challenges of mental ill-health remain pernicious, with a rising number of people experiencing things related to their mood, perceptions, thoughts or behaviours that cause them difficulty in their day to day lives.

Mental health itself is the site of a particularly resilient parlour game where, on one side people will line up to stress the societal factors which create mental ill-health and on the other people will argue for the biological or genetic underpinnings of mental health difficulty. In the UK, with its National Health Service, the treatment of mental ill-health as a set of ‘diseases’ is most often considered to be the responsibility of the NHS. In primary care, the general practitioner is currently considered to be the coordinator of the whole health of the individual, with secondary care providing additional specific interventions. Local authorities are considered to hold the responsibility for social care, which, broadly, in relation to mental health would be the provision of services, supports and opportunities based on the chronic experience of mental ill-health as a disability. It is, of course, far more complicated than that with the NHS employing psychiatrists and psychologists and therapists and occupational therapists and community mental health nurses amongst other specialisms. The assumption still remains that it’s the NHS you go and see if you’re not feeling too well.

The NHS in England operates what is known as a stepped care model in primary care, where someone will be tried on the least invasive or chemically based intervention first, with continued contact allowing for another intervention or treatment to be tried should the initial one prove to be ineffective for the person having difficulties. There still remains the assumption that a first visit to the GP will lead to a referral to specialist secondary care services, but these specialist services have both long waiting lists and limited resources.

The ongoing support or care available for someone having difficulties with their mental health was, until the 90s often provided by the NHS, but that is diminishing in most places. What would be obviously a case for support or assistance from social care is complicated by hugely restricted funds available to local authorities.

Notionally, the provision of mental health related services in the UK works to a biopsychosocial model, where the health of any given person is considered to be a mixture between their own biology, their own thoughts and understandings of themselves and their health and the social conditions in which they find themselves. This is understood to be a dynamic state, rather than a fixed one. Changes in people’s lives interact with changes in their body which interact with changes in their behaviour.

So, in practice, the parlour game of biology versus biography often tends to be far more important to people who either have a particular axe to grind or a particular professional area to defend. As you will no doubt be aware, every year there will be a cycle of news stories questioning the increase in the prescription of mental health related medications, most usually antidepressants. Some will see this as part of a big pharma conspiracy to medicate the population for profit. Others will see this as a response to unsolved problems in society — social determinants — which lead to a simple answer of prescribing drugs rather than tackling root causes. Some will focus on particular groups within society and draw causal links, often far in advance of any research to confirm them. Others will see such rises as indicative of the failings in the provision of alternative services or treatments. It’s seldom discussed what the ‘right’ amount of prescriptions would be. Similarly, any rise in incidence in any mental health diagnosis will find itself put to the service of a range of political or social arguments about the ways that society should work or the ways that individuals should behave.

While all of these wider picture discussions will continue indefinitely, while the rest of society comes to terms with the reality and prevalence of mental ill-health, their horizons and timeframes do not sync very well with the here and now of people’s lives. Autonomous, community-led groups and organisations focus far more on the solving of here and now problems than they do on such conversational debates. This is not to say that such organisations and groups led by those with lived experience do not have strong conceptual or philosophical underpinnings, it’s just that winning those particular arguments in the ‘marketplace of ideas’ proves far less pressing than making a difference to people’s lives right now, today.

The NSUN Covid Fund

Between April and July 2020, the NSUN Covid Fund distributed £120,000 to 88 user-led groups and organisations in England to support them in carrying out activity to support others mental health during the social distancing lockdown and beyond.

The initial £60,000 was made available from the Department of Health and Social Care via the Coronavirus Mental Health Response Fund.

Further additional funds of £50,000, released from the same Fund, were distributed to 10 organisations as part of efforts to support organisations and groups that served and came from racialised communities. Lankelly Chase contributed a further £10,000.

63 percent of the funding went to groups led by people from racialised communities.

Due to the need to distribute funds quickly, NSUN cast its net widely in advertising the funds, which led to applications from organisations that would not have necessarily described themselves as user-led mental health organisations, but who were certainly carrying out activities that supported people’s mental health and were certainly led by people who had experienced mental ill-health.

The stipulations for the fund were fairly simple. One: you had to be user-led. Two: you had to have a specific idea for how you would spend the funds you were asking for to help others mental health. Three: you had to spend the money to help people right now, or as near as possible. Four: maximum available grant was £2000. Five: you had to tell NSUN what happened and how you spent the money.

The process of application began with a short form. After an initial sift, applications were passed onto an NSUN associate who followed up with phone, zoom or email. In combination with the initial application, a short written recommendation with additional background for the funding panel was created and a shortlist created. These shortlisted recommendations were discussed by a funding panel made up of NSUN Trustees and associates, including me.

People applying didn’t need to have a bank account and didn’t need to be anything apart from an unconstituted group. The whole point of the fund was to get small amounts of cash out to people with lived experience of mental health difficulty doing stuff right now.

What NSUN found from applications was that people with lived experience were doing a number of things across England to look after people’s mental health. Applications came from across the spectrum of different types of organisation, everything from unconstituted mutual aid style groups to small charities to social enterprises.

The problems that people were trying to solve weren’t the problems that the NHS was trying to solve, nor were they trying to replace the things that NHS was struggling to provide. It can’t be said too often that the NHS is not the sum of mental health or the only mechanism that influences people’s own mental health, no matter how vital services and treatments are.

My observations were that there were 3 things happening:

1. Groups of people were looking at ways they could keep together their communities of peers for mutual support when face to face meetings weren’t possible. You could call this keeping in touch.

2. People were looking to provide support or other practical things to people they knew would be experiencing a gap or lack of service more generally. You could call this helping each other out.

3. People were looking to create new online things that would reach people they may not have known already. You could call this taking the opportunity to fill the vacuum.

Roughly speaking, successful applications fell into 8 categories:

1. Money to use technology to keep in touch

Far and away the most commonly funded thing was a Zoom or other video conference license to better enable the holding of online sessions, discussion or similar. Also in this category were funds to purchase things like cheap tablet computers of laptops, either so a group itself could use them for video conferencing and social media or so that they could be distributed to people who didn’t have that technology. Similarly, money for data so that could happen.

2. Things to distribute

Craft materials and activities were popular things, as were things like PPE, masks and sanitizers and the information to go with them. At least one applicant used funds to make a newsletter/magazine to pop through people’s doors

3. The booking of outside facilitators to run online sessions

Groups, recognising they didn’t really know how to offer things that people were missing booked outside facilitators, trainers or sessional workers to offer sessions online

4. Money for petrol / money for mobiles

Groups asked for small funds to pay for socially distanced visits and to pay for phone bills to telephone people

5. The launching of new online things

Overlapping with the paying of outside facilitators, people asked for funds to help them to set up new online things, either as substitutes for things that they might prior to the pandemic have been doing face to face or taking the opportunity to launch something completely new which they felt would reach people who needed the thing they were offering. Some of that paid for things like Facebook ads and similar.

6. Making Radio for audiences for whom English isn’t a first language around mental health, or other broadcast radio

7. Other practical stuff

One group who supported women leaving abusive relationships asked for money to help pay for their storage lock-up for a couple of months so they could store clothes and furniture to distribute to people leaving their homes and possessions behind. Another was setting up a helpline for LGBTQ+ people in the traveller community, set up by someone from that community. The NSUN Covid fund didn’t fund food deliveries, but many groups included that in their request. Practical deliveries of things like toiletries happened, as did informal problem solving over distance around things like benefits and access to other services.

8. General access to technology for the purpose of moving to remote working and online activity.

People put in applications for very specific bits of tech hardware or software to make it easier or more effective working online with existing communities.

More applications than you might expect came from ‘under the radar’ groups who were not registered charities, falling more under the banner of mutual aid as peer support than they did under any other sort of heading. People getting together to sort stuff out who had been getting together to sort stuff out before the pandemic began.

During the first covid-19 related lockdown, mutual aid groups organised across the country to meet the needs of community members who were not having their needs met by paralysed or overstretched public services. While mutual aid has a specific lineage of thought derived from anarchist self-organisation, mutual aid in practice was not necessarily by people who had arrived at the practice through political means. Covid-19 Mutual Aid UK, a website set up as a clearing house for details of mutual aid groups defines mutual aid as:

“…where a group of people organise to meet their own needs, outside of the formal frameworks of charities, NGOs and government. It is, by definition, a horizontal mode of organising, in which all individuals are equally powerful. There are no ‘leaders’ or unelected ‘steering committees’ in mutual aid projects; there is only a group of people who work together as equals.

Mutual aid isn’t about “saving” anyone; it’s about people coming together, in a spirit of solidarity, to support and look out for one another. A mutual aid group is a volunteer lead initiative where groups of people in a particular area join together to support one another, meeting vital community needs without the help of official bodies. They do so in a way that prioritises those who are most vulnerable or otherwise unable to access help through regular channels.”

Groups across the country have been raising and distributing funds to meet essential needs without any recourse to anyone else. People have been getting on with doing things that other people can’t or won’t do.

For NSUN, the language or mutual aid helped to define a form of user-led group or activity that worked to their own ends within their own community without subscribing to ideas, practices or worldviews propagated by statutory or large charity bodies. This autonomous mental health related action, led by people’s lived experience and meeting immediate and vital needs, focused on building community and meeting community aims first, on its own terms, had often previously flown beneath the radar of wider mental health discussion because it is people getting on with stuff, not just advocating for other people to do stuff.

What do user-led groups need?

In Summer 2020, I interviewed 20 organisations and groups who were members of NSUN and who had benefited from the funds provided by the NSUN Covid Fund. The 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.

Across our interviewees there was no one strong single life story of organisations. They did not follow diagramatic progressions from one stage of development to another, nor did they all begin in the same sorts of conditions or with the same sorts of structures.

For some interviewees, the genesis of their group or organisation was a group of friends or associates deciding to ‘do something’. For others an idea was supported by a more experienced body or individual into being. For some older organisations, their genesis lay in local deliberation about unmet need during the period of voluntary sector expansion in the decade or so before the financial crash of 2008. Some were the idea of a single person who assembled supporters around them. Others were the continuation of work that had begun within a voluntary or statutory sector body.

Interviewees often said they did what they did because no one else was and because they were in the right place at the right time to make something happen. A combination of passion, opportunism, vision and luck were defined as important factors in why their organisation existed.

Being a ‘user-led organisation that delivered mental health related activity and support’ did not dictate the current form of a group or organisation. This form depended on a number of factors:

• Available funds
• Experiences of those currently running or managing
• Sense of purpose
• Existing local landscape
• Changing makeup of members/users/community
• Exposure to ideas, concepts and peers

At least one of our interviewees has an organisational structure that conferred voting rights on members. Others had trustee boards; management committees and other elements one would expect to see from a voluntary sector organisation. Others were unconstituted groups, groups of individuals choosing to work together, organisations with strong executive roles and some with flatter structures.

These organisational structures aren’t the same as the activities of these groups. Some existed to hold one regular group. Others provided a range of services and supports. Some were in essence umbrella or infrastructure bodies themselves. Others still were closer to mutual aid or peer support organisations.

Key findings from the research were varied, and painted a very different view of what the ‘user-led’ or autonomous landscape looks like.

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.

From these key findings we developed a set of ten testable hypotheses to improve the condition, sustainability and position of user-led groups working in and around mental health in England. These were:

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

Our research found that autonomous groups often found themselves in a double bind, where organisations that they might ask for help neither understood their mental health related mission nor the community to which they and the people they were helping belonged. In the context of smaller groups and organisations, people came together to solve a particular problems beginning from a starting point of affinity, with people choosing to do things together because they shared a particular viewpoint, set of skills or had identified a particular activity, service or activity which they collectively wished to make happen. By choosing to carry out activities that promoted or supported mental health, these organisations did not suddenly become ‘mental health groups or organisations’. An LGBTQ group remained an LGBTQ group. A group supporting East African migrants did not cease to be a group supporting East African migrants. People worked within their communities as they saw them and defined their work in the context of that community. Such groups had lived experience of multiple forms of discrimination, disadvantage, racialisation or marginalisation. These groups and organisations were not responding to external calls to address mental health related issues in their community, but responding to internal demands from within their own communities and deriving from their own experiences.

This intersectionality was the context in which these groups operated. Lack of nuanced understanding of this on the part of infrastructure organisations led some to feel like neither who they were or what they were doing was understood enough for advice or support to be of use.

2. 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

Some of our interviewees were workers in organisations that had been established long before they joined the organisation. Others had joined organisations more recently. Others still had been instrumental in the setting up of an organisation. In developing a group or an organisation there is often a ‘you don’t know what you don’t know’ challenge. A safeguarding policy is developed when a safeguarding issue arises, rather than in advance. Trustees are appointed when a pot of funding is pursued. The ‘what you need to know to do the thing you want to do’ represents a kind of hidden curriculum. If you have experience in voluntary or community activities you may have learned some of these things, or all of them.

Moving from running a small group to expanding and delivering different things; ‘scaling up’; or changing structure is also a hidden curriculum. Groups and organisations that have been in operation for a number of years go through a series of transformations. Each transformation represents another chapter in the hidden curriculum. Undertaking the work that our interviewees undertake involves a combination of generic knowledge and specific knowledge; all of which may be inaccessible until a particular challenge or difficulty or opportunity reveals its absence.

3. 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

4. Funding and support tailored specifically to user-led groups in mental health would increase capacity and impact of existing user-led groups.

5. 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.

In our broadened understanding of what ‘user-led’ means, user-led groups were groups that come from a particular community or specific situation as well as those that meet more programmatic definitions of what ‘user-led’ means. Such organisations are more like their community than they are like any textbook definition of what a user-led group should be or do. These organisations work from within their community outwards up to the edge of their communities. Traditional services work from outside of these communities and seek to work inward into them.

Some of our interviewees spoke of their organisation existing within their community and within a dynamic with other communities and other bodies. A number of our interviewees’ work grew from a shared experience of exclusions, discrimination or simply from being a minority within a broader community. As such, autonomy did not mean ‘freedom from the imposition of mental health service use’ but had varied dimensions, meanings and applications. Some interviewees occupied a trusted ‘between space’ between community and other bodies and services. Others were focused only on meeting the needs of the community within the community. Mutual aid, self help, user-led, peer relational — all have specific means of existing within specific communities.

There is diversity in user-led organisations, not because our interviewees came from different backgrounds (because they did) but because there is diversity in what needs to be done to improve people’s lives and what people are actually prepared to be involved in, support and develop. A local group that supports a local community is not merely a proto-charity that has not had the vision to grow and stabilise into something that looks like a user-led version of another service provider. While it may grow and develop, it will not do so if the support and advice given, or the funding available, turns into an organisation that no longer meets the needs and holds the relationships with the people it intends to help and support.

Organisations that are part of communities are part of those communities in far more ways than being geographically based in them. Being user-led is not a tool that is used to achieve particular outcomes, it’s the heart of the organisations in question.

Many of our interviewees expressed their idea of service as providing first and foremost a place to be. This was for some organisations or groups their primary aim: to provide a space or opportunity to be together with others. For others, this ‘being together’ was the building block or foundation of the means by which they might help create the changes or support that people needed.

Larger and more established user-led organisations amongst our interviewees defined their role as being somewhere that people could come. Sometimes this was an actual physical space; sometimes a regular set of connections or relationships.

A number of our interviewees spoke of the way that their organisation first of all created a safe haven or harbour for people who, because of their difficulties or, in the case of migration, status did not find themselves well served within the broader community. From this trusted space, staff or volunteers could then support people, connect them with other opportunities and in some cases represent either individually or collectively their needs to other bodies.

Some of our interviewees spoke about the ways in which their method of work or their ethos meant that they provided services, support or opportunities to ‘all comers’ outside of any diagnostic, legal or funder or contract created exclusions or classifications. This they saw as providing a place to come while, instead of or during contact with other more rigidly defined services. This, again, related to a conception of their group or organisation as space rather than a service.

Interviewees who expressed this view, however, had mixed views about referrals from other bodies. More service-oriented groups did not always see a link between referrals from professionals such as GPs and funding. More relationship based groups could not always maintain the coherence and function of their groups if they had an ever-growing number of attendees or members, especially where their physical meetings were based on conversation or activities and functioned well because of the relationships between attendees. Such groups may have had ambitions to grow, but were clear that this would not be through adding attendees to existing activities, but through developing something else.

At least one group with a democratic user-led model spoke of the tension between the desires of their membership for a more confrontational political positioning and their need to operate both within Charity Commission guidelines and to maintain their funding base. Part of the tension derived from contracts or funds provided by local partners which were the same bodies that their members wished them to take to task.

Especially for some of our interviewees who grew from and represent marginalised and racialised communities there was not a blanket acceptance of their legitimacy as fellow players in their community. One interviewee raised the time they had collected hate crime experiences from their community of refugees and presented them to local police; only to be met with the response that they had no legitimacy in doing so and that their community should have come ‘straight to the police’; despite the nature of their community and their past experiences representing a legitimate barrier to those people doing so. Of our interviewees, only one group was in the mold of a local pressure group. This group felt that their views were often excluded as being unpalatable.

6. 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

One thing we found in the research is that it is often very, very lonely ‘doing the work’. For at least some of the interviewees in the project, it wasn’t clear beyond their own staff and peer groups who people might turn to should they wish to discuss the actual business of doing the things that they do. In this context, it is not useful to think of ‘user-led’ groups as being organisations with flat hierarchies or as default cooperatives. The groups we interviewed had many forms, many structures and many senses of what ‘peer’ meant. What was clear was that often the bulk of organisational ‘work’ felt to a core group or to one individual, which meant that there was not always someone else to speak to in confidence about broader meta issues within the carrying out of the work of the group or organisation.

7. Practical support for user-led groups around structure, governance, practice and strategy will improve effectiveness and resilience of those groups and organisations

8. 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

9. Supporting the creation and maintenance of healthy working environments in user-led groups and organisations will increase capacity, sustainability and resilience in the sector

NSUN’s own experience of delivering the NSUN Covid fund in 2020 to ‘user-led’, ‘peer’ and ‘mutual aid’ groups indicated that the ethos of user-leadership within organisations is not as simple as asking ‘is your management committee 50% lived experience led?’. Lived experience of mental health difficulty is an elastic concept. All of our interviewees defined themselves as ‘user-led’; but what this meant in practice differed from organisation to organisation and group to group.

Organisations based on relationships, shared passions and operational knowledge were strongest where these three domains operate in harmony. The realpolitik, compromises and differences of vision and operational skill and knowledge had often caused rifts within groups and organisations. At least two of our interviewees had not sought outside funding at all to carry out their work. Passion can hold organisations together, but it can also make them turbulent and unstable. This was as true of interviewees who had more traditional professionalised structures as those who had more fluid community or peer oriented ones.

For many of our interviewees, there was a distinction between being user-led and peer-led; with a small group of people with lived experience forming a core staff or team who then provided support, activities, experiences to others. This was not the same as all people involved with a group having the same level of influence over decisions. Some interviewees had boards of trustees that were majority ‘lived experience’ and others did not.

Some interviewees voiced a tension existing between the idea of ‘people with lived experience delivering and managing organisations’ and ‘organisations delivering consistently to those that need them.’ One interviewee flagged that mental ill-health does not disappear simply because you are working to support others; and that leadership and delivery were not necessarily the same thing. Even where groups defined themselves as closer to peer-run, there still tended to be a small group of individuals, or even one particular person, who carried out many or all of the organisational and administrative tasks and who steered the group or organisation.

Lived experience knowledge in mental health was created as a category so that it could be conceptualised as a counterweight and alternative to professional (medical) knowledge. As such it works by pushing against, modifying or declaring difference from practice and assumptions in ‘professional spaces’. Lived experience put into practice in creating, sustaining and developing organisations is a different proposition.

10. Funding developed with reference to the needs of user-led groups in mental health could be a significant market intervention

Many of our interviewees spoke about the challenge of securing funds to carry out the work they and their community of members/users thought was important. Some of our interviewees had created organisations and groups that carry out very specific functions with specific groups of people. This could be likened building a machine for a particular purpose. When they spoke of the challenge of core funding; they often did so in terms of the challenge of raising funds for the raison d’etre of their organisation as defined by them and the people it benefits. As more than one interviewee put it: ‘why can’t they just give us the money to do what we do because we know our community best, not them’. Project based funding was seen as pushing organisations out of shape and away from their intended outcomes, as if running a successful sweetshop could only gain investment if it became a garage instead.

In my lecture How can you solve problems in mental health with entrepreneurship if people who live with mental ill-health always end up poor? last year, I discussed market failure and the Inverse Care Law. Put very simply, those most in need of healthcare are those least likely to be able to access it. In terms of the groups of people in communities across England using their own lived experience to support others, there was also an inverse funding law, in that the funds most difficult to secure were ones directly related to carrying out their core activities as defined by them and the communities they serve. In doing what their community deems important and necessary, autonomous groups and organisations found themselves perpetually explaining why such activity was and is necessary. These groups and organisations arose from, and operated within, the needs of particular communities facing particular challenges, rather than being defined by the boundaries and assumptions of larger organisations and statutory organisations delivering mental health services. Such organisations and groups had more in common with the communities from which they grew and the people whom they worked with, for and alongside than they did with the broader ‘big picture’ theories of change beloved of funders or the specific service level agreements made when contracting to provide a service to a local authority or NHS organisation.

Being a community group is often a ‘right here, right now’ endeavour. Coming into existence to meet a particular need as defined by you and your community means solving problems in the here and now and depends, very often, on the good will, support and tolerance of the community of which you are a part. Mutual aid by definition is a mutual endeavour. ‘Doing with’ rather than ‘doing to’.

It is possible to argue that funders create a market for types of organisation or projects through making funds available in particular ways or with particular purposes or exclusions as they seek to meet their self-set objectives for social change. The question is whether the available market of funding reflects the reality of user-led groups’ aspirations and needs or impedes their potential.

While funders may like to feel their support is strategic and contributes to organisational stability or resilience, this is not always appreciated by groups or organisations. In this context groups felt they were ‘jumping through hoops’ with a tension between the ideas of funders as to what an organisation should do and what the organisation or group currently recognises as being in accordance with their intentions, members or ideas.

This lack of available funding represents a kind of market failure, where need is not related to the availability of resources to meet it. This often makes questions of sustainability, organisational resilience and growth, expansion or consolidation for user-led organisations moot where the choice of activities and of people for whom they are provided would not under any local circumstances attract sufficient funds. Interviewees were often in the position of trying to educate the market (funder, local commissioners) at the same time as trying to operate within those markets.

For at least some of our interviewees this mismatch between available sources of funding and their own self-determined direction and activities was a significant problem. One of our interviewees who ran an organisation supporting women within a marginalised and racialised group stated in exasperation: ‘why can’t they come and see the work we do? We will always lose out on paper.’

Fundraising for core activities was a significant challenge for some interviewees, even when the sums required were under £2000 per year.

Conclusion: communities solving community problems need more than just me giving long lectures

Mental health related activity led by those with lived experience is often overshadowed. It often feels that mental health or its lack is an area uniquely susceptible to the desire to provide solutions and answers to other people, rather than supporting those with lived experience in the community to build their own solutions. It is easier to ‘take to market’ an artificially created notion of community rather than one that actually exists and easy to create products using entrepreneurial approaches where activity can follow funds and opportunities for development by choosing what one is best placed to sell, rather than concerning oneself with the needs of a fixed group of people in a particular place with particular problems.

Autonomous or community led activity to improve the lives of those who experience mental health difficulty is a territory which is bordered on all sides by activities and industries which, to the unseasoned eye, may look very similar but are in fact radically different.

A non-exhaustive list would be:

Broader community activity

The wellness industry

Community outreach

Asset based community development

Mental illness treatment services

On the surface, the aims and objectives of these different industries will often use very similar language to express their aims and objectives. The crosstown traffic between them has been strong over the last fifty or so years, with historic roots going back far beyond the New Age of the 1960s and through the 1930s and even further on back to the first new age at the dawn of the 20th century.

There has been a kind of linguistic convergence, in part because of the necessity to ‘sell’ everything to potential purchasers or funders, which means that everything from candles to secondary school education to cars to charities have ended up with descriptions of themselves that are couched in terms of growth, potential, enablement and in the deep and ongoing pursuit of wellbeing. Everything becomes a new and shiny way to increase wellbeing and maximise potential. Concepts such as self-care or community range along a spectrum from a new bath bomb to an intensive course of self-improvement. These self-descriptions commonly have an implied or explicit view of modern life which the activities or products themselves seek to counter. The idea of reconnecting with self, escaping from the accelerating and dehumanising aspects of late capitalism or reaching one’s true potential adhere to ideas good and bad in part because they represent acceptable ways of describing lack, loss, bewilderment and dis-ease.

It is important to draw a distinction between the attempt to increase human happiness (mental wellbeing) and the desire to reduce or mitigate the impact of mental ill-health.

Often, autonomous experience led groups and organisations struggle to express what they actually do in the language of scale, improvement and theory of change. Funders may want them to be system changers, advocates and activists. For them, meeting the unmet needs of their community while holding that community within a community together as it is buffeted social, economic and policy changes is the change they want to see. They often have a challenge quantifying the impact of what they do in ways that show what would happen were they to stop doing it. Telling the story of how a cup of tea with someone changed their life is easy. Quantifying the value of that cup of tea in terms of savings to the public purse or social impact of that brew is next to impossible.

It is unfortunate that community makers, organisers and change making catalysts often see mental ill-health as something that will be decreased by their own actions ‘in making the world a better place’, rather than seeing mental health difficulty as belonging to a set of exclusions, challenges and conditions specific in themselves. The jam tomorrow argument that if we improve all of the other things, things will automatically get so good that the specific needs of those who live with mental ill-health disappear is beloved of furrow browed activists and smooth cheeked think tankers and opinion columnists alike. Autonomous lived experience led activity doesn’t exist in that sweeping, broad world-fixing space but in the knotty world of making things better today.

Those who experience mental ill-health, distress or trauma, in common with Disabled people, experience the impact of social and economic organisation which does not recognise or acknowledge the ways in which their needs and requirements differ from those who do not share similar impairments or experiences.

There has been a trap, implicit in user-led activism, that autonomous services or supports must be an alternative to services provided by local authorities, charities and the NHS. In these terms, such autonomous activity is often judged and found wanting for not being professional, ambitious or sustainable enough. User-led activity has, in previous generations, at times, looked to provide an alternative to hospital or an alternative to medication, or therapy or any other existing service found lacking and wanting. The definition of user-led group we mentioned earlier defined such groups as users of a particular service who were also doing something themselves, the implication being that such groups in part existed to improve the services they used. This is still an assumption. That user-led groups are basically the equivalent of what tenants associations are to housing providers, rather than autonomous community groups following their own agendas and making decisions based on the needs they see. In the work I’ve spoken about here, we saw a much more varied field of actors which did not follow the contours of public service provision. They were their own thing, discrete and complete as actors within a landscape that also included statutory and charity bodies. While user-led groups and organisations may be providing an alternative they are often doing so through pragmatism rather than ideology.

Another reason that autonomous or user-led activity to solve real ‘here and now problems’ people have goes unnoticed is that it is activity that doesn’t centre the saviour and turns on its head a couple of deeply held and prejudiced assumptions, the strongest of which is that once someone passes into the realm of mental ill-health they become a passive non-actor, only capable of accepting the kindness and tolerance of others.

I’d argue that such autonomous action can very much benefit from help, support and development, but that this is not because those involved are lesser than any other organisations founders or members but because the thing they are trying to do is really, really difficult. People choose to try to make mental health better for their community in practical ways when no one else is doing so, coming from a place where they themselves have experienced and continue to experience challenges themselves. To require help and support in doing so is not a sign of unfitness for the task, given that the areas of activity such action tends to lead people to are ones that other organisations and services have ignored or deemed too challenging or unprofitable to try to work within.

Some argue that it is only properly funded, comprehensive public services, including mental health services, that can solve the challenges people face. I’d like those too, but I don’t think people’s difficulties will just disappear. People who live mental ill-health, distress and trauma aren’t simply ‘normal people’ who have ‘gone wonky and need reshaping’. I’d argue that if we were to have a comprehensive and all encompassing state provision, the role of autonomous activity would be even more vital. It’s possible for services to patch you up and get you well, but that isn’t the same as getting your life back or understanding and exploring your place in the world and what it means to be you. We might get really got at preventing people feeling they should kill themselves, but that doesn’t mean that those same services can help someone to find a life worth living.

The ‘productification’ of mental wellbeing, either through absolutely everything becoming a ‘wellbeing intervention’ (see trees, candles, reading, going to the pub) or through the desire for funders and commissioners to find cost effective solutions to ongoing challenges leads to user-led community action either being overlooked or forced into chasing the moon of developing a salable service with an big enough marketplace. For such autonomous action, the thing they do is their answer when it works for the people who benefit from it. Much of the heat and energy of discussion is about upstream prevention. This is great, but by definition those who already live with mental ill-health, distress or trauma have been failed by prevention. Prevention in this space means stopping someone’s life getting worse, or preventing something worse happening. This is not just a sticking plaster, it’s a lifeline. The pragmatic realism of meeting people where they are is the best platform to build anything else upon.

I don’t quite agree that every community has ‘exactly what it needs to solve its own problems’ as some extreme advocates of community over state provision maintain. The community within a community that can be the long term experience of mental ill-health means that people experience severe lacks in opportunity, in assets and social connections. In those conditions, people begin with a disadvantage and marginalisation on top of, and in addition to, any other exclusions or inequalities they experience. This, for me, has been one of the tragedies of community organising in the last two decades: it has refused to regard those who live with mental ill-health as constituting a community within themselves.

There is inevitably a bootstrapping challenge with such community activity. The right people in the right place at the right time with the right relationships is a lightning in a bottle situation. People default to grand plans, protocols, franchises and scalable models. These rarely reach the parts that autonomous flowering of activity reaches.

The answers that autonomous action for mental health comes up with might be revolutionary or they might be mundane. A cup of tea and chat with someone who really gets what it’s like to be you can be a life-changing experience. Lived experience can be put to many ends, not just peer support. A user-led group or organisation could be anything it chooses: a theatre group, a pub, a media organisation, a benefits advocacy service, a corner shop, a community space, an online course of relaxation.

People who live with long term mental ill-health, distress and trauma don’t need saving. They don’t need one answer to rule them all.

What autonomous action for mental health needs first is recognition, second resources and third sympathetic support from those also active in our communities to make it easier for such action to flourish.

What autonomous community led action for mental health does will not be easy, but what it achieves can change lives.

@markoneinfour