Peer support has a history

The following is the text of a talk given by Mark Brown at Ancient Approaches in Modern Healthcare, the Central and North West London NHS Foundation Trust Lived Experience Practice National Conference at ISH Venues in London on 20th July 2023.

It can be tempting to see what we recognise as peer support now as something that was always present, just hidden like a sock down the back of a sofa, waiting to be found. The reality is more complicated, and perhaps explains why peer work, or lived experience with a capital L and capital E are so connected to mental health.

Most of our ideas about how mental health should be regarded and fitted into life post-date the establishment of the NHS, the UK’s social security system and what mental health lived experience means are impossible to filter from the history of thinking about mental health in the country.

Peer support is not just a mental health thing, but for a number of reasons when we mention the words peer support or peer worker conversation inevitably moves to talking about mental health.

National charity Mind defines Peer support as “when people use their own experiences to help each other. There are different types of peer support, but they all aim to: bring together people with shared experiences to support each other. provide a space where you feel accepted and understood.”

NHS England defines Peer Support as “a range of approaches through which people with similar long-term conditions or health experiences support each other to better understand the conditions and aid recovery or self-management. Peer support may be formal or informal: it can be delivered by trained peer support staff and volunteers, or through more informal, ad-hoc support among peers with lived experience.”

Wikipedia defines Peer Support as “when people provide knowledge, experience, emotional, social or practical help to each other. It commonly refers to an initiative consisting of trained supporters (although it can be provided by peers without training), and can take a number of forms such as peer mentoring, reflective listening (reflecting content and/or feelings), or counseling. Peer support is also used to refer to initiatives where colleagues, members of self-help organizations and others meet, in person or online, as equals to give each other connection and support on a reciprocal basis.”

There is a tendency in healthcare to define things like peer support in positive terms, in part because the way in which healthcare understands outcomes is by looking at the extent to which a factor, intervention, treatment or approach leads to positive and desired outcomes. Health economics examines the extent to which a quantifiable, positive intervention creates measurable positive effects upon a defined condition or health outcome. Health systems are concerned with what they are trying to get to happen and the extent to which any combination of interventions or structures bring that closer or further from being delivered.

That means lots to health care systems, but the extent to which this means anything to people with lived experience is better measured by the question: does lived experience leadership, labour or knowledge actually change the position or situation of those living with mental ill-health, distress and trauma?

Health care systems are often like ‘of course we have let in those with lived experience into roles within our organisations, it’s the right thing to do’. This presents the arrival of peer workers, peer support and lived experience work as somehow part of a stately, orderly enlightened procession into the future where the right thing at the right time becomes obvious and gets put into action. The reality of the history of Lived Experience in mental health is far more combative than that. The inclusion of peer workers, the acceptance in principle of lived experience knowledge as important, the notion that there is a distinct form of experience and knowledge that is separate from traditional professional knowledge have all come less from what people who live with mental health difficulties want to happen and more from trying to prevent what they definitely don’t want to be subject to.

I did a little experiment with a popular search engine, searching for ‘peer support’ and the great majority of the first page of results were discussions of what peer support meant in mental health, NHS trusts discussing peer support in mental health and and mental health charities discussing broadly the idea of peer support. This surprised me. Maybe the search engine knew to much about me and was showing me stuff it thought I’d be interested in. So I went all technical and installed a VPN and went incognito like that ethical hacker off of Scam Interceptors but still I got the same results. Overwhelmingly, the phrase peer support seems to be attached to the field of mental health in the UK.

Which is weird when you think about it. Pre-pandemic, according to the Kings Fund about 15 million people in England have a long-term condition. Long-term conditions or chronic diseases are conditions for which there is currently no cure, and which are managed with drugs and other treatment. Also pre-pandemic, according to the Department for Work and Pensions, 19% of working age people in the UK (and 22% of the overall population) have a disability. Disability charity Scope claimed that this amounts to 13.9 million people of a UK population of 66.02 million. It’s likely that this has been changed by the pandemic, which potentially has been a mass Disabling event. Even if we just keep our thinking out peer work to health, there’s an awful lot of people with an awful lot of ongoing challenges. Long Covid advocacy and mutual support are an example of an new and emerging area of peer support

Language and terminology are always a wriggling can of semantic worms in mental health, so I’m loathe to open that particular slithery tin in any great depth but it’s worth noting that ideas and the language to express them are always part of the of the overall culture that gives birth to them. I know that different countries have very different terms for stuff that might be called peer support or peer work, but whether these completely map onto the the things we refer to as peer support in the UK is very much open to debate.

Different countries have different conceptions of what peer work might be. American peer work in mental health often tends to be the preserve of NGOs who deliver services either to health care providers or as separate discrete services on their own. Some countries focus on independent advocacy for the rights of patients, others on the provision of informal supports ‘in the community’. What lived experience looks like in mental health in different countries depends on how the health, social security and legal systems of those countries are structured; what attitudes exist around mental ill-health, distress and trauma in the national psyche and how people with lived experience have approached choosing which battles to fight and how those fights have been organised.

When I’ve been to conferences in the rest of Europe, I’ve often been given the title of ‘Peer advocate’ which has often made me feel a bit uncomfortable. I’m a person who lives with long term mental health difficulty, and certainly there will be similarities in my experiences shared with other people who live life with broadly the same impairments as me, but whether I am clearly an advocate for a broader body of experiences is something I’m not so sure of. I’m not part of an organisation that draws people together based on a shared set of experiences of mental ill-health, nor do I directly mentor or support anyone or provide services directly that help people with their lives as they travel through the world living with experiences, sensations or impairments that others do not. I’m a person living openly with my difficulties and challenges, and those experiences and challenges inevitably flavour everything I do, in the way that even a single dunk of a tea bag into a cup changes boiling water into a cup of tea. Sometimes the tea is strong, other times the tea is weak.

I have lived experience of living with mental ill-health, and I feel solidarity and feel fellow feeling with others who experience a whole range of different challenges, discriminations and exclusions. I can, and do, bring broader knowledge of mental ill-health, distress and trauma into spaces where those present predominantly have not experienced these things. But this is not some that actively translates into a programme of work. I do not present myself to others in specific settings as someone with a duty to support them through the use of my lived experience and I do not have a measurable goal in the deployment of my lived experience. Unlike many of you at this Peer Support conference, I am not a worker within a defined set of structures and situations.

A lot of discussions about lived experience in the service of others end up discussing what the special qualities of lived experience are, but a more useful discussion in the context of understanding the history of lived experience or peer work is to look at the purposes to which lived experience are put and why those particular uses were chosen in particular times and particular places.

The very simple answer to why peer support and mental health go hand in hand is that peer support, and broader lived experience work, seemed to be the best answer to changing people’s lives and circumstances at a particular point in time.

There is a famous quote from L.P. Hartley’s novel The Go-Between that goes “The past is a foreign country; they do things differently there.” There is a mistake that we make in assuming that mental health, peer work and the status of lived experience within mental health has always looked and felt the way it does today, right now, as we sit in this room. As I wrote in a piece during my time as Writer in Residence at Centre for Mental Health:

“Mental health has a history. Mental health and distress happen in an ever-changing context of real world conditions. The maintenance of mental health, as with all human endeavours, has a history. No idea or practice or structure is born without parents and ancestors. We often fall into the trap of seeing treating and supporting people with mental health difficulties as something that exists outside of history; as if the way things are now is how they always have been and always will be, rather than being the result of complicated interactions between ideas and material conditions over time.

“In mental health, what seems eternal is defined by being a reaction to what came before. There is the comforting idea that research and practice and knowledge builds upon itself in an unbroken line of progress, each year pushing back the boundaries into fresher, safer and more fulfilling lands. The reality is more mundane and less directional; politics, economics and social ideas combine in ways that are less like a game of dominoes, each step laid neatly end to end, and more like a game of chess where every move changes the shape of every move that follows.”

While health systems may justify the inclusion of peer workers on the basis of improving the outcomes for those services, the history of lived experience within mental health services has been about changing how life turns out for those who live with mental ill-health, distress and trauma. What has seemed the best way to do this has been defined by people’s political understanding of what would be most likely to achieve that in the time and moment in which they live.

Peer support in its broadest sense tends to come into being when groups of individuals recognise that whatever is currently being offered to them in terms of advice, support or general understanding just isn’t doing any good for them in making their lives better. This process of finding peers is often necessitated by the thing that sets someone apart from those around them being stigmatised or the subject of discrimination, legal sanction or other negative consequences guided by the prevailing ideas about the status of those who embody this difference. So, first, there is liberation through being understood and understanding others in turn.

The chance to explore the world and how it acts against people by those who share the characteristics that drew peers together is often the springboard for self-determination and reclaiming of identity in the face of paternal, discriminatory or even exterminatory social structures and attitudes. When people explore what they have in common, understandings of how that commonality is created by the world they live in grows. We have found each other, but what now?

In mental health, our foreparents were often not trying to improve mental health care as an end itself. In their time, and the world as they found it, they were often working to change the situation of people living with mental ill-health, distress and trauma overall. They weren’t healthcare professionals, but problem solvers in the political realm of the place and status of those who live with challenges others did not.

The push for lived experience visibility and self-determined mutual aid has as many roots in things like Alcoholics Anonymous, the work of gay healthcare pioneers during the aids epidemic and community responses to deindustrialisation, structural and everyday racism and interventions like women’s refuges as it does in the question of making mental health care better.

The modern age of lived experience change making in the UK draws from some of its emphasis from the 1960s and 1970s, where a general questioning of social attitudes and social practices created a breach, at least intellectually but sometimes in practice, in the belief in ‘authority’, at least for those that were ill-served by that status quo. Of course, the majority of people in the UK weren’t off their heads in a field or living in a commune or taking part in wild bacchanalian happenings, but most people were aware that the world around them was changing. It became increasingly clear that not everyone was the same. Civil rights, the struggle for gay rights, the growth of second wave feminism, the struggles against racism, the perceived upending of tradition for tradition’s sake was present, even if for those who were comfortable in the world as it was it was at best a distant circus. For those who did not have the option of conformity, who were marginalised, discriminated against or actively demonised or devalued, it showed that perhaps there were opportunities for change. What became important was the idea of liberation.

Last year, I was honoured to be asked to write an obituary for Peter Campbell, someone whose contribution to mental health in the UK was described by Paul Farmer of Mind as ‘vast’: “It’s hard to imagine the movement today,” said Farmer, “without Peter’s constant activism and his advocacy for a better deal for people with mental health problems. His radical work has both influenced services and inspired others to speak out.”

It can be hard to grasp how different the pre-internet age was for activism and for finding peers. It was a world of telephone calls and photocopied pamphlets and meetings. What you knew depended on who you could meet. The definition of who was a person with lived experience in mental health focused more on experiences of involuntary and voluntary hospitalisation and what happened in your life before and after these experiences

Describing himself as a mental health system survivor, the activist Peter Campbell, who died last year aged 73, experienced the old psychiatric asylums as well as the newer systems of care in the community that replaced them. He worked for more than 40 years to end the marginalisation of those subject to the powers of the mental health system, and to help people who live with mental health difficulties find a collective and credible voice to advocate for change.

In 1986, he co-founded Survivors Speak Out, the first network organisation, enabling people to work together to share information and campaign for rights and better conditions in hospitals and in the community. Throughout the 90s he was a lecturer and trainer, working with psychiatrists, nurses, housing officers and other health professionals to give the user view.

At university he began to experience mental health difficulties. His father died when Peter was 21, and he went into mental health services for the first time in 1967. In his own words, “for the next 15 years I was in and out of hospital, adrift… isolated, alienated from myself, from other people… Silenced. I had no voice at all.”

Peter joined Mind in Camden, north London, as a volunteer in the early 80s, helping to set up the Camden Mental Health Consortium. In 1991, he co-founded Survivors’ Poetry to promote poetry by survivors of mental distress.

In 1986 Peter appeared in We’re Not Mad… We’re Angry, probably the first network television programme made under full editorial control of those with lived experience of mental health difficulty. Broadcast by Channel 4, the film mixed dramatised sequences scripted by Peter with testimony from people who had been detained in mental health hospitals.

Appearing in the documentary himself, Peter explained. “If I’m angry, the degree to which I am angry about my treatment is not because I want to tear the system down. It’s not because I want to seek vengeance. It’s because I see thousands of people like me whose positive contribution to society is being rinsed down the drain.”

Peter spent eight years as a council member of Mental Health Media in the 1990s, during a period where the charity began to make its own educational films.

From Anger to Action produced by Mental Health Media in 1992 is a training video which serves as a time capsule of ideas held by people with mental health difficulties about wishing to escape from poor, patronising or coercive mental health services and to create lived experience-led alternatives. Various people in the video (which is worth a watch to see how much has and hasn’t changed in 27 years) talk about wanting an alternative to the mental health system. One person says: “When I left the mental health system I knew there were loads of people who were stuck in it who could also have been leaving it if they’d had the opportunities I’ve had. One thing I’d like to say to mental health workers is those people that you might think are never going to get better, always going to be dependent on drugs, always dependent on social security, always struggling in and out of hospital — don’t make those hopeless assumptions about them because once you start making those assumptions then they’re more likely to become true. The truth is that those people could be having very good lives at some point in the future.” Another says: “Most of my problems had been either as a result of medication or as a result of being told I was ill or not worthy or not quite right.”

Writing in 2020, Peter concluded that, while society and mental health services listen to people who live with mental ill-health more than ever, services remain custodial rather than caring and hospitals still leave people disempowered, much as they did 50 years ago.

Peter was instrumental in the setting up of the Survivors History Group, the website of which I recommend to anyone who wants to get a sense of the world in which our modern sense of Lived Experience in mental health was born. It’s an amazing archive, which you should all check out so as best to understand that history is not simple, but messy. At any one time there are a variety of ideas about what should happen and a variety of interests and forces set on making something else happen.

The experience of limiting expectations, and the cultural belief that those who experienced severe mental health difficulties were somehow irretrievable and could only be managed and ‘looked after’, led a previous generation of activists to desire freedom from the limiting assumptions of mental health professionals. These activists desired autonomy and an escape from medical control of their lives, proclaiming that they were people the same as anyone else, even if different. The demand was in many ways a demand for the end of the exclusion of people who experience long-term distress and mental ill-health, a desire to come in from the cold and not to be set aside as different.

What people advocating for a particular form of freedom couldn’t see in the 1990s was how the world would change around their ideas.

Writing in his 1997 edition of Closing the Asylum: The Mental Patient in Modern Society, Peter Bareham captures many of the binary tensions in mental health care at time where it was as yet unclear the direction public policy and attitudes would take going into the New Labour years. It was a time where the voice of mental health service users or survivors was a stronger force than it had ever been, but that voice was based on the experience of long-term mental ill-health and distress in the 1970s and 80s. In chapter titled ‘Broken and Flawed Individuals’ Bareham writes about people with diagnosis of schizophrenia throwing off the position ascribed to them by the ‘sick role’; quoting an “ex-mental patient” telling a researcher “You are not your illness! Find another role besides mental patient!”

People with lived experience in mental health who have been around the block a bit often talk about ideas created by people with lived experience being co-opted or betrayed if and when they are adopted by ‘the system’. What begins as a liberatory idea becomes, when put into action in combination with other ideas, a far less positive one. This is often portrayed as the idea having been changed in its journey into the system, as if it were possible for ideas in practice to remain pure and uncontaminated. What is more likely to happen is an example of unintended consequences. An idea might have one intended or desired effect, along one binary between good and bad, but when thrown into the stew of overlapping agendas, desires, objectives and duties it becomes an ingredient, not a main course. What was a pure solution to a specific problem facing some people becomes something different when it is adopted as part of something that includes lots of other ideas and existing practices.

In many ways, what we now understand as formalised peer work is where the struggles of previous generations were at least partially won. It is now possible to have a paid position within an organisation and all of the benefits this provides like pension contributions, occupational health, professional development, a wage that put food on the table that also is based on the use of your lived experience. This isn’t to be sniffed at as a victory. History wasn’t guaranteed to turn out that way. Long term institutionalisation and the legal long term incarceration for those who have committed no crime has vastly reduced, but isn’t yet gone. Peer work can be your job because others struggled to set the agenda so the possibility that it might be a job became imaginable.

In my work with NSUN, what we saw was that modern user-led organisations were often community organisation first and foremost. They were assembled not around the idea of lived experience as a pure and shining ideal, but what people saw as being wrong and what needed solving. As with the movement in the 1980s and 90s, this as assessment of what’s wrong is very often pragmatic and doesn’t always centre the mental health system. There is an entire generation of people with long-term mental health needs who have come to maturity never having experienced the cloying and dispiriting mental health services that previous generations were keen to escape. These people wonder what life might have been like if they had actually had the ongoing support they needed. Healthcare systems still speak about service-user involvement, when the reality for a lot of people is that they never really got to be a consistent service user in the first place. For a number of organisations and groups, the objective is not to get lived experience in mental health care systems and more for mental health experience to be recognised as an independent and legitimate organising principle for the provision of support, services and activity.

What is happening now will be the history to those exploring peer work, lived experience and the need to change the status and conditions of those who live with mental ill-health, distress and trauma in the future.

So, the question is ‘where are the biggest tensions now and what needs to change most?’ If our predecessors legacy is to make a world for us now that is different from the one that harmed them, what will our legacy be to those who follow us?

What problems does lived experience need to solve now? The most likely spaces for that to happen won’t be the smoothest pools, but likely the most choppy waters.

Folks helping other folks based on shared experience will always happened. That’s not in question. The real question is ‘what does lived experience most need to do to change the position and condition of people’s lives and who and what is likely to stand in the way of it doing so?’

To folks of the future, our present, our peer support will be a foreign country. What do we need to do differently?

@markoneionfour