I’m in Perth, Western Australia at the Asia Pacific Conference on Mental Health (http://www.rfwa.org.au/aspac2012/).
I’ve delivered a worskshop and today delivered a keynote speech to 300 people that went down pretty well. That was a huge relief because it more or less summarises much of what I’ve been thinking about for the last two years.
Below is the full text of the speech for you to have a look at. I think th conference organisers will be sharing a video of it online at some point, so you’ll be able to see just how nervous I looked.
The Emerging Generation: Moving Beyond Service User – Mark Brown
When people talk about “mental health service users” I always want to ask “which services do you mean?”
I’m a person with mental health difficulties who is not currently accessing any services, not for wont of trying. In fact, I actually deliver services like One in Four, the mental health magazine. Does that mean I’m not a mental health service user anymore?
Due to the cumulative advances in treatment, support and the reduction of stigma, the current emerging generation of people with mental health difficulties, like myself, are more likely than previous generations to have a job, have kids, have interests, to have the things that we’d recognise as ‘having a life’ or at least able to have a shot at them. Having a mental health difficulty does not now mean that we are, as a matter of course, exiled to a strange and dark netherworld completely apart from the everyday world.
Commonly, people complain of feeling a lack of ability to influence the treatment they receive, a lack of choice in service they receive for support and an overall feeling of getting to where they want to despite the support that they receive rather than because of it. In effect services often say ‘You can define your own recovery and you can hope and aspire to a better life than the one you currently have, but only if that looks like what we can provide.”
The needs and wishes of people with mental health difficulties are changing more quickly than a rigid focus on service delivery can accommodate. We are both trying to raise the aspirations of people with mental health difficulties to develop ownership of their recovery, putting them in the ‘driving seat’ of services and support defining their own goals and outcomes while at the same time having difficulty in responding to those aspirations and demands within existing inflexible methods of service delivery.
I think that we’re seeing a step beyond that, something that I call ‘The New Mental Health’, people stepping beyond being ‘service users’ which I hope to define for you today. It’s about people with mental health difficulties using their own skills, ideas and experiences to make and run their own organisations, projects and services, sometimes finding better ways of doing things that traditional services have done, sometimes doing things that are completely different.
Before I define what ‘The New Mental Health’ is in greater depth, I’d like to take the opportunity to define the situation as it generally stands now. Whether by accident or design, Mental health difficulty is still seen as primarily a medical issue rather than as a disability. To put it another way, it is seen as an abstract experience of ill health rather than something that people live with over a period of time. Eventually, the medical model suggests, mental health difficulty will be eradicated like rickets or TB. Mental health difficulty is seen as something that can be solved, and as such, does not represent something that is weaved through all of the elements of the life of the individual that experiences it. The recovery model has tried to challenge this, but has its own particular challenges.
There is still an over-riding bias toward seeing people with mental health difficulties as a group that others do good for without seeing us a discrete group in society who may have opinions and ideas of our own.
I think one of the shifts that I’m noticing is people with mental health difficulties moving beyond seeing their identity as being defined by their interactions with services. We’re moving beyond seeing ourselves as ‘service users’ and shifting to the wholly more logical position of seeing ourselves as people in our own right with complex needs, wishes, aspirations and ideas.
A LITLE ABOUT OUR HISTORICAL MOMENT
I think that there’s a new generation of mental health projects, campaigners and organisations that are developing new ways of thinking about mental health, all springing from a refusal to accept that getting the services you’re given is good enough.
I think that there is a new mental health, one that isn’t defined by the term service user. More than ever people with mental health difficulties are finding themselves in situations that would probably not have happened to previous generations. We’re running into questions that don’t have established answers.
Through editing One in Four, the magazine written by people with mental health difficulties that I created, I often see fiercely independent and resourceful people running headlong into the fact that things aren’t changing as fast as we want or need them to, hitting every glitch in the way services work and uncovering every inconsistency in public attitudes or the conduct of organisations or individuals.. This is because our lives and aspirations don’t fit the old ways of seeing mental health difficulty. In fact, for some, the experience of interacting with services that are inflexible and over which we can exercise little control in fact contributes to the overall sense of disempowerment we experience as part of recovery from a period of mental ill health.
People aren’t running into an unfocused idea like ‘stigma’ but actual hard situations where what they are trying to do is countered by ideas about who or what they are as a person who experiences mental health difficulty and what it means.
This is the area that the New Mental Health operates in. Not about services but people.
As long as relevant and timely medical treatment is available (which is a whole different disscussion in itself) people with mental health difficulties are out there. We’re mingling with the rest of you. We aren’t just service users. Sometimes we’re your employees, your peers, your colleagues. Sometimes we’re even your boss.
What unites us is that we’re running into challenges that aren’t about how to get ‘better’ from our mental health difficulties and pick up where we left off but challenges that ask ‘how can I have mental health difficulties and still just get on with life?’
We’ve shifted the focus of our attention from medical services as the sole provider of help, support, advice and treatment and are asking ‘if we do want help to make our way in the world, who is going to give it?’
And, for The New Mental Health, the answer is often ‘ourselves or people like us’.
THE NEW MENTAL HEALTH
So, what is The New Mental Health and why does it take us ‘beyond service user’? The New Mental Health is not so much a movement, but a broad range of projects, organisations and services that are moving in similar directions.
Broadly, the defining characteristics of the new mental health are:
- The New Mental Health is pragmatic not ideological
The New Mental Health blurs the old boundaries between people who provide services and people who receive them
- The New Mental Health come from outside of (in the UK), the NHS or large providers
- The New Mental Health is not usually about campaigning
- The New Mental Health works with non-medical aspects of people’s experience
- The New Mental Health constantly struggles for existence
- The New Mental Health is not still fighting old wars
- The New Mental Health is directly responsive to needs, and
The New Mental Health generates real opportunities for people
One of the over arching qualities of the New Mental Health is that it is pragmatic and focuses on getting things to happen by which ever method is best. It isn’t hung up on a particular form of organisation. It doesn’t turn it’s nose up at the idea that social enterprise might be the best method of making things happen. It isn’t scared of getting in there an making its case. What it isn’t so interested in is hewing close to old sectarian divisions – the service users or survivors versus ‘the system’. It spots gaps and it tries to fill them.
Traditionally services in mental health are provided by professionals without experience of mental health difficulty for those that have. The new mental health is often developed and delivered by people with direct experience of mental health difficulties. There isn’t anything that blurs boundaries more than that. In the case of my own company, I have a mental health difficulty. My co-director doesn’t. In the case of One in Four the mental health magazine we publish, all of the writers have direct experience of mental health difficulty. I’m not a service user supported by my ‘normal’ colleague.
When the people running a service have direct experience of the thing that their service addresses it becomes more difficult to see the issue that the service addresses in isolation. Practices like co-production and peer working bring the ‘service users’ to the same table as the service providers. This changes things. Working with organisations run by people with mental health difficulties means that suddenly, if that’s something you aren’t comfortable with, the barbarians are no longer at the gates, they’ve breached the citadel.
Very often the New Mental Health comes from outside of large providers. There are a number of reasons for this. The first is that coming from a background of lived experience, organisations run by people with mental health difficulties recognise gaps and opportunities that large providers don’t. That’s because they start from a very direct knowledge of what problems people face and a personal understanding of where people’s aspirations differ from the menu of opportunities that is on offer from established sources.
When we started One in Four, I drew on my own experience of mental health difficulty and specifically my own experience of how uninspiring and bitty information about mental health was. We started from the point of asking ‘what do people with mental health difficulties want to know?’ rather asking ‘what does our organisation have an obligation to tell them?’.
The second reason that the new mental health comes from outside of large providers is that often the new mental health is in some way disruptive of established ideas or ways of working.
Star Wards in the UK is a phenomenal success. It’s a loose programme that individual mental health wards can sign up to which helps staff to see ways that their ward might be changed to be less awful, less depressing, more lively and an all round better place for both staff and patients to be. It sounds like the kind of initiative that health providers start all the time to improve standards but it isn’t. The person who started it, Marion Janner, is both a public sector professional of some standing and a person with mental health difficulties who is entirely open about the time that she herself spends in hospital. Star Wards grew from her own thoughts about how crap it was to be in hospital and extends suggestions to mental health professionals who want to change the experience from the bottom up. Its very value is that it comes from outside of large providers and remains separate from them.
The third reason is that large providers don’t employ as many people with experience of mental health difficulties as they should and when they do they tend to employ them in roles that are very much defined by the way that the service in question thinks about people with mental health difficulties. It is a very different thing to be employed specifically as peer worker by a large provider to being a peer worker in an organisation that is run and managed by peer workers. Within larger organisations it is possible for people with mental health difficulties to drive through innovation, but it doesn’t happen as often as it should.
I know of one person who tried to get their managers interested in the idea of delivering mental health awareness sessions to public sector workers without much traction. In the end they booked the largest space their organisation had while their managers weren’t looking and went ahead with inviting as many decision makers as possible to experience the kind of session that was being proposed. That was the birth of one of the most exciting round of mental health awareness sessions I’ve witnessed. They wouldn’t have happened if their founder hadn’t just gone ahead and done them.
One of the qualities of the new mental health that challenges traditional ideas about service user groups is that the new mental health is more about doing than it is about campaigning. Campaigning is asking one group (maybe a particular service, maybe the general public, maybe the government) to do something on behalf of people with mental health difficulties. In many ways, the new mental health only exists because of the excellent campaigning that our peers have done before us. It was those people that changed laws and modified services so that we could get at least some of what we need. There is always room for campaigning, but the new mental health is about doing. It’s about recognising a gap and deciding to try to fill it for yourself and your community. It’s a shift from saying ‘someone needs to do something about this’ to saying ‘we’re going to do something about this’.
As I’ve already said, traditional providers of services have come from a medical understanding of mental health difficulty and are trying to evolve a more rounded view of the role they play in people’s recovery. The New Mental Health tends to look at the bits of people’s lives that lie beyond the consulting room, the ward and the clinic. It doesn’t tend to see its activities as making symptoms better but making lives better.
Cooltan Arts, the London mental health arts organisation, doesn’t see itself as providing arts activities because they are therapeutic. It provides high quality arts activities by and for people with mental health difficulties because often people with mental health difficulties find those valuable experiences difficult to access. It isn’t about providing a diversion for people to fill in their time as a ‘service user’ but about doing high quality arts.
Another defining characteristic of the New Mental Health is that organisations and projects are often struggling for their very existence precisely because they’re new and are coming at mental health from unexpected and untried angles. It’s precisely the fact that they are moving beyond definitions of service user that makes them difficult to place in the existing hierarchy of organisations. This can make it difficult for them to find funding because they do not fit traditional ideas of what organisations should be like but also that they do not fit traditional ideas of what people with mental health difficulties are looking for from services or projects. These organisations can be ahead of the curve of innovation. This means that their understanding of the needs, aspirations and wishes of people with mental health difficulties can be in advance of the existing fixtures in the landscape. These organisations can also find it difficult to work with organisations with less forward thinking views, a point I’ll come back to.
One hallmark of the New Mental Health that brings it into conflict with existing service user organisations is that it is not as interested in redressing the injustices of the past but in focussing on activities for the future. To develop a mental health difficulty now is not the experience that it was thirty, forty years ago. It is still distressing, disruptive and bewildering, but many people do not experience the worst excesses and unpleasantness that unreconstructed services were capable of inflicting. The people involved in this developing wave of mental health thinking have not had the experience of a pre-recovery model world or have decided that making things better for people in the future is more important. This, coupled with a focus on doing, rather than campaigning can sometimes make the new mental health sits ill with more established user movements.
When the New Mental Health thinks about changing things it tends to be pragmatic and start from looking at what can be changed in the here and now. Where it works, through neccessity, it tends to start small and to meet the needs it finds directly. This is partly because it tends to grow from identifying a particular problem that a particular group of people have rather than attempting to find an answer that will work for everybody. It’s also partly because this new wave of innovation doesn’t find it as easy to secure the funds it requires.
The New Mental Health also generates opportunities for people with mental health difficulties by creating things that we have a stake in and which we can influence and feel part of… Would you rather be an involved service user or someone working for a mental health organisation. Which is more likely to look good on your CV and generate opportunities in the real world?
SO, HOW CAN WE MAKE THIS NEW MENTAL HEALTH HAPPEN?
First and foremost we must recognise that innovation and ideas might come from outside of traditional ‘professional’ routes.
At the moment, bigger organisations have all of the money, all of the staff and all of the resources. In the past they may have helped out organisations led by people with mental health difficulties, but kind of as an optional extra. In times of tightening budgets, however, it’s often a different story as services retreat behind keeping their frontline in place.
In short, the New Mental Health needs people prepared to believe in it, support from people inside services and communities outside them, some cash and resources to make things happen and recognition that it represents something different.
Beyond that, one of the challenges that the current generation of people with mental health difficulties face is that having come to doing stuff as ‘service users’ or ‘people with mental health difficulties’ we find it very difficult to escape from that pigeon hole.
Just because someone uses or has used a service does not mean that they can never be involved in delivering a service themselves.
I have coined a verb: to beneficiary or to be beneficiaried. This describes the chilling moment in a meeting or professional situation when someone changes their attitude towards you after you disclose that you experience mental health difficulties yourself; shifting you from professional peer, colleague or partner in delivering a service to beneficiary of that service. You can feel it, the withdrawal of fellow feeling and a retreat into professional well meaning, the defensive barriers rising…
We also have to recognise that being involved in service user involvement in traditional services as a service user isn’t something that always delivers great benefits to anyone other than the service itself. Service user involvement is often represented as a way for people with mental health difficulties to take a step on from just being a service user and make use of their experiences to make services better for people in similar situations.
The next dimension, the step beyond service user, is to find ways of that asset of experience can be something an individual can profit from in their life, rather than just in a service.
If we are committed to recovery then we have to ask: ‘how can we help people to cash in their assets in the real world beyond the doors of our service?’ To do that, larger organisations have to recognise that the chaotic, vibrant ever shifting world outside of the doors of their service isn’t an unfortunate hindrance to delivering services, it’s where people actually live. Organisations and groups that work in that world, that come from that world, are your natural partners. They’re ways that people can move on.
How have organisations supported the New Mental Health? In the UK the government’s Office of Disability Issues funds a programme to support disabled people’s user-led organisations (or DPULOs) to deliver sustainable services and opportunities led by people with disabilities including mental health. I know of one NHS mental health trust that invested in the set up of five social enterprises led by people with mental health difficulties, taking a seat on their board until they were confident that the companies could stand on their own two feet. If your organisation doesn’t have money to commission or fund organisations outside of itself as partners in doing mental health, it can make available some of its assets to help out. Large organisations have lots of assets, not least knowledge and experience. Could you loan a member of your staff to a local mental health organisation run by people with mental health difficulties? Could you do it without trying to take control?
One of the important bits of the recovery model is defining your own outcomes and finding a role and meaning in your life. There is an obvious argument to be made that an organisation that has seen you primarily as a patient may not be the best organisation to support you to not see yourself as one.
To really help people move beyond being service users we need to make sure that there is enough variety, choice and self-determination that they don’t turn into just service users.
I’d argue that the new mental health, that is, the idea of people with mental health difficulties taking control directly of making services and running services is the natural next step from the recovery model. The new mental health, building on the recovery model, realises that, actually, when you think about it, maybe what people need to get on with their lives is something that might not actually come from traditional services at all.
It’s an unpalatable fact that sometimes for something new to arrive, what is old has to end or be replaced. There’s a lot that’s good about current mental health services but also a lot that isn’t what it should be. In times of tightened budgets, for new and exciting things to come into being, or successful things to expand, some of what is here will have to go.
The New Mental Health presents the challenge: what if you tried to give up some of your control of the mental health landscape? What if you stepped aside from trying to provide all aspects of mental health services? What if you invested what you had in services that might ultimately mean your service is no longer needed? What if you made people with mental health difficulties partners rather than service users? Can you put your money where your mouth is and help people to develop new things for their mental health that you don’t control?
Now, when you think that through, that’s a pretty disruptive idea if you’re only really getting your head around ‘service user involvement’. Sometimes you might have to accept that the thing that stops people moving beyond being a service user is the services they use.
Is the New Mental Health happening everywhere? Not yet. It happens in small isolated pockets where conditions are right and individuals and organisations break through the old understanding of mental health and decide that just being a service user isn’t good enough.
That’s the thing about the New Mental Health, it’s already here but it’s not everywhere at once. It needs recognising, nurturing, supporting and promoting. We’re a generation finding our feet but we don’t have all the answers or, often, much of the money.
When I think about the New Mental Health I often think of science fiction author and inventor of the word cyberspace William Gibson. When people asked him how his predictions about the future were so accurate he explained that he hadn’t actually been predicting anything. He told people that he just noticed elements of the world around him that other people hadn’t spotted.
I’d like to finish on that note; to quote William Gibson “The Future is already here, it’s just not evenly distributed yet.”
What do you reckon?