The following is the text of a speech delivered by Mark Brown exploring The New Mental Health delivered at Leeds Mind’s 40^th Birthday celebration on October 3^rd 2012

These are interesting times. It brilliant to be somewhere that’s celebrating something…

It seems virtually impossible to get through a day without some new bit of bad news: cuts to benefits, cuts to services, job losses, ever more draconian benefits tests, economic instability both at home and across seas.

We’re in the midst of the sharpest contraction of public spending in decades and we’re just at the beginning if our current government is to be believed.

It’s quite easy to feel that everything is falling apart and that every day is worse than the last, but I think there are glimmers of hope on the horizon. Well, not just on the horizon but all across the country, in Leeds, in fact anywhere where people with mental health difficulties are deciding to take forward our own projects and organisation under our own steam and with our own ideas and values. I call this The New Mental Health.

The New Mental Health is about people with mental health difficulties using our own skills, ideas and experiences to make and run our own organisations, projects and services, sometimes finding better ways of doing things that traditional services have done, sometimes doing things that are completely different. It’s not a movement so much as a shift in thinking. If there’s one thing that The New Mental Health asks it’s ‘what if people with mental health difficulties just went ahead and did things for ourselves?’

I’m going to define The New Mental Health in more depth in a moment, but first I want to look at where we are now.

Where we are now

More than ever people with mental health difficulties are finding ourselves in situations that would probably not have happened to previous generations. We’re running into questions that don’t have established answers.

As a result of the hard work and campaigning of the individuals and organisations that came before us, people with mental health difficulties now 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’.

This awareness of people with mental health difficulties as something other than just a problem to be solved, and our awareness of ourselves as groups of people with differing needs and wishes, didn’t exist when the NHS was formed. Treatment and support was provided along industrial lines, with mental health services providing one-size-fits-all treatments and support.

As we get more successful at challenging the idea that having a mental health difficulty is somehow a diagnosis of doom that means we have to give up hope of ever having a decent life, the more clearly we can see that the needs and wishes of people with mental health difficulties are changing more quickly than a rigid service delivery can accommodate. This is a step forwards.

However, this step forward is happening at a time where budget cuts and other forces are making it more difficult for larger organisations to focus on anything other than the most severe of needs. In many places, some of the established parts of the mental health landscape are under threat if they haven’t disappeared already.

So we’re looking at a situation, for the time being at least, where traditional services are being stretched and, in some places, disappearing while what services there are struggle with the fact that the way in which they deliver help and support doesn’t quite fit with the lives that people with mental health difficulties actually have.

Many of us find ourselves campaigning to try to save services that, if we’re honest with ourselves, we don’t actually find that useful because they don;t quite fit what we need.

People aren’t accepting that they are ‘just’ service users. We want to do something. We want to help sort out some of the problems that we’re seeing in our communities.

What someone who is seventeen needs to help them get through life hearing voices isn’t the same as what someone who is thirty nine needs to help them get through life hearing voices. What someone taking refuge in the UK from a war ravaged country in Africa needs to help with their anxiety isn’t what someone who is a manager of a small company making window frames needs to help with anxiety.

While people may have the same symptoms, they don’t have the same lives.

For many of us, the focus of our attention has shifted from medical services as the sole provider of help, support, advice and treatment – We know that medical services are vital to help us get well, but they aren’t what helps us to keep well – And we’re 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’.

So what is The New Mental Health?

The change I’m calling 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. 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. The shift I see as The New Mental Health is people with mental health difficulties just getting on with making change happen.

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 important 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 or in fighting ideological battles. 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. It spots gaps and it tries to fill them. People with mental health difficulties are the people best placed to see where something isn’t happening or to see where something new could happen to great effect. The New Mental Health is about working out how to make that something happen.

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. In the case of my own company, I have a mental health difficulty. My co-director David 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.

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 organisations can’t have one voice to talk to ‘service users’ and one voice to speak to professional peers. Suddenly the people who have direct experience of something are the people who you work alongside rather than ‘those people over there’.

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?’. Across the country people are spotting similar things based on their own knowledge and situation.

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.

The third reason is that large providers don’t employ as many people with experience of mental health difficulties as they should. 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.

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 another. 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’. The way things are at the moment, that gap might be there because a larger organisation doesn’t have the budget to fill it anymore.

As we’ve established, The New Mental Health isn’t so much about the medical aspects of mental health, but meeting the needs that people with mental health difficulties have that aren’t medical. The New Mental Health might not be able to cure you of any symptoms you have but it might provide you advice, support, activities, friendship or even a job.

Within The New Mental Health organisations and projects often struggle financially for their very existence precisely because they’re new and are coming at mental health from unexpected and untried angles. 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. In its favour, though, The New Mental Health can often get far more value from any money it can secure and can use it far more directly making things that people want to happen actually happen.

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 and tends not to have campaigning as a main focus. There is a limited amount of time in each day, and The New Mental Health tends to get on with trying to solve the problems that it sees. Sometimes we are held back in mental health from developing new ways of meeting needs because we fear that if we find solutions to our problems ourselves it means that we will play into a political trap that is looking for arguments to remove money from our sector forever. There is room for both campaigners and do-ers in mental health. Campaigning against cuts in benefits is desperately important, but so is setting up a local support group for the people that are experiencing them.

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 necessity, it tends to start small and to meet the needs it finds directly. This is 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 because The New Mental Health tends to spot gaps in areas that have experienced cuts or which have been ignored.

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?

Now we’re going to talk about the The New Mental Health in action

There are a number of organisations and groups run by people with mental health difficulties across the country that fit within The New Mental Health and which share most of the traits I’ve outlined. There’s some in Leeds. There’s Cooltan Arts in London who’ve been doing excellent art projects for years. There’s Launchpad in Newcastle, run by people with direct experience, who’ve successfully delivered a whole range of projects over a number of years, there’s Tea and Talk, mental health awareness with a twist, but I wanted to give you a small example of what The New Mental Health looks like in all of its learning by doing glory.

There’s a group of people with mental health difficulties called Ubuntu in the area where we’re based that were at one point the users of an arts project funded by the local trust. It was an expensive project, with full time OTs and other staff. When it ended they decided that they wanted to carry on delivering arts projects themselves. They lobbied the council and the trust for money to keep going; a small community group of people who just wanted to make art happen. The council managed to find some money to keep arts activities going under the old project name. Nowhere near enough to run the project in the way it had been run before, but enough for a committed group of people to make lots of stuff happen.

In an hilarious example of council bureaucracy getting in the way of making things happen, the money was put out to tender. Our plucky gang of people with mental health difficulties put in a very creditable bid for the money but the money went to an established local arts organisation. They still haven’t spent the money.

Did our local group give up? No. They kept going, kept delivering arts activities subsidising it out of their own pockets, borrowing space from other organisations. They knew that what they were doing had value and was worth while and was different from what an established organisation would provide. Together, as a group, they knew what they wanted and what other people with mental health difficulties would like too. They turned their community group status into a virtue. They decided that not having an office was a good way to keep costs down. Because they kept their eyes on doing something good, talked to other people who could help and didn’t wait for other people’s permission to do what they knew they and others wanted, they’ve managed to stay around long enough that someone has given them a small grant.

Are they going to be able to solve all the problems of people with mental health difficulties in our local area? No. Are they going to change the entire world and develop a massive multi-million pound empire? No. But they are going to be able to provide arts activities for people who really want them at a time and in a place where no other arts activities run by people with mental health difficulties exist. And who knows what might happen a little bit further down the line…

That’s the kind of thing The New Mental Health is about – spotting a gap, finding resources and making something happen. And you can bet that with people with mental health difficulties in charge, that something happening will look and feel different to what would have happened if the big, traditional service had stayed around to provide it.

It doesn’t just have to be arts activities, though I’ve heard a rumour(!) that there’s quite a bit of that going on in Leeds at the moment. As I’ve said, traditional services have been good at providing treatment, but there’s far more to having a decent life with a mental health difficulty than treatment. What people need is stuff that makes life worth living, and that’s where The New Mental Health steps in. It’s people with mental health difficulties doing and making stuff for other people with mental health difficulties that makes life better; and who better than us to know what that stuff might be?

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.

So what does The New Mental Health need to thrive?

At the moment, bigger organisations have all of the money, all of the staff and all of the resources, even if they don’t feel like they do. 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.

One challenge that The New Mental Health always faces is the old one of stigma. 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 has or does use 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 realises that they aren’t just talking to a professional peer but ‘one of those people with mental health difficulties’. You can feel them drawing back, thinking ‘on no, I thought they were a proper professional’, putting on their best talking to patients face… Still happens to me.

If you work for an organisation, The New Mental Health will come and find you as many times as you go looking for it.

Established organisations may not have budget to give away but they have something just as important: resources and knowledge. In every organisation there is a storehouse of experience in running projects, securing funding, meeting challenges. Leeds is one of the places that I hold up as an example of people being prepared to share what they know so that things can happen. Larger organisations have buildings, spaces and other assets that they can use to support local projects even if they can’t find any budget to do so.

If you have a problem convincing the powers-that-be that supporting local groups run by people with mental health difficulties is vital, think about this: 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.

There’s loads more I could say about The New Mental Health, but I’ll leave you with this:

Aside from all of the things I’ve already mentioned, can you guess what The New Mental Health most needs?

It needs us, people with mental health difficulties, to look around at our communities, find something that we want to change, take a deep breath, think about all of the challenges lined up against us, shrug our shoulders, give a cheeky wink and say ‘sod it, we’re going to do it anyway.’

Thank you!

The people behind One in Four (us) are launching a new project in Hackney to get a mental health newsletter off the ground in the London borough of Hackney.  The project starts October 10th.

Here’s the details.  Please share. Also if you work for a Hackney mental health organisation get in touch!

Hackney Mental Health Newsletter project

Would you like to join the editorial team for a new newsletter about mental health in Hackney?

Do you want to help tell other people with mental health difficulties what’s going on in the borough?

Want to write and research things that’ll help other people find support, understand more about mental health services and get the most out of life?

The newsletter will be produced by people with mental health difficulties for other people with mental health difficulties.

You’ll get to learn or use journalism skills including:

• Feature writing
• Interviewing
• Editing

Weekly editorial meetings – Wednesdays 2pm – 4pm – at Centre for Better Health, 1A Darnley Road, London, E9 6QH

For more information call 020 8521 7956  or email hello@socialspider.com

Along with Victoria Betton I’m giving a workshop called ‘Snog, marry, avoid? Activists versus corporates in the public sector‘ as part of Social Media Week 2012.

The event is about the increasingly obvious new area of interaction between people and public services that is opening in social media and the challenges and opportunities it poses.

One of the things that I’ll be touching on is the idea that social media (twitter, facebook, tumblr, blogs) have become the coffeehouses of the 21^st century.

This is hardly a controversial idea. During the 17^th and 18^th century ‘Age of Enlightenment’ coffeehouses were spaces where, for the price of a penny, people could meet each other and discuss things. See if this description by historian Brian Cowell sounds like social media to you: The coffeehouses were “places where people gathered to drink coffee, learn the news of the day, and perhaps to meet with other local residents and discuss matters of mutual concern.” The coffeehouses were places where, for the first time, a class of people were hashing out their own ideas and responses to what at the time was the eroding of autocratic rule by Kings and Lords and finding their own voice. As Cowan says “the coffeehouse was a place for like-minded scholars to congregate, to read, as well as learn from and to debate with each other, but was emphatically not a university institution, and the discourse there was of a far different order than any university tutorial.” Sound familiar?

For many of us that’s the experience of social media – a space where we meet with other like minds, discuss, share and learn.

As I said, this is hardly a controversial idea. Visions of the internet as a virtual coffeehouse have existed for as long as the idea that the internet brings people together has existed. What is new and novel is that the internet and social media are bringing together groups of people who have never previously been exposed to each other to such large degrees, and this poses interesting questions for people who deliver public services.

In a traditional model of corporate communications you have your organisation and then various means to communicate to an essentially unconnected mass of individuals (the public). If you are a public sector organisation you have your communications team and then routes to connecting with your ‘users’ or ‘clients’. The information flows one way for the most part; out from your organisation at the centre of the web via various routes which all end at the full stop of an individual. You message goes out to the people it’s directed at then stops. Nice, simple.  A no longer true.

Social media has changed things

What’s happened in the new coffeehouse of social media is that thousands of people who had previously been those atomised full stops have found each other, and having found each other are in the process of debating and developing a discourse and public opinion of their own and also choosing to make their own policy and practical interventions. If you have any doubt as to whether this is happening, have a look at http://wearespartacus.org.uk/.

I’ll use the example of the group I belong to:  People with mental health difficulties who may or may not use services.

For many of us, our mental health difficulties have been misunderstood and in some cases shameful facts of our lives. We have tended to communicate vertically with public services and charities providing us mental health support (evaluation, consultation). Organisations that represent us have tended also to use similar vertical strategies to collect information and then to lobby on our behalf. What hasn’t happened for people in great numbers until the internet and social media arrived was the ability and the impetus to communicate horizontally, that is, to communicate with people in a similar situation.

Social media, with its role as a new coffeehouse, has created conditions where people who were previously isolated or marginalised can meet each other ‘face-to-face’ to share, debate, argue, build, destroy, criticise, praise, organise and develop.

Where it gets even more interesting is that the results of this getting together ultimately colour the version of reality that is presented by newspaper and television, or has the potential to. We are are increasingly seeing news media responding to stories and events that first ‘broke’ or first developed in social media.  If you doubt this, think about how many events are now covered on television news that result from camera phone footage that has been uploaded to social media sites.

So what has this got to do with public services and snogging, marrying and avoiding?

Social media is something that public services in the UK have been notably lagging behind upon for a number of years. This is because social media, while looking like a communications task to be given to comms teams as a cheap way of sharing press releases, is in fact something more complex with huge possibilities and also significant risks for the public sector.

Many areas of the public sector, mental health included, have for a long time struggled to find ways of capturing patient feedback and of drawing into patient ideas about how services might be improved. ‘Consultation’ has been a term that led to much debate, some cynicism and more than enough heartache for all involved. The question was ‘how can we get people to tell us what they think?’

Now, via social media, public sector organisations have the terrifying or exhilarating experience of being able to access what people think of them 24 hours a day. Not only that they can also witness glimpses into the every day lives of the people for they provide services and also what people may do in response to the services that they provide.

In the context of mental health, the most popular mental health bloggers (non professionals, people who use services rather than run them) have followers and reads far, far in advance of anything a NHS mental health trust has yet achieved. In this sense, in the social media coffeehouse, they have far, far more influence if far less practical power to make things happen ‘in the real world’.

While they don’t control the budgets or write the legislation they do have a significant influence of the way that constantly evolving public opinion lies.

This is a similar situation across many areas of human life and hu8man need. For some it feel like a load of brash new bloods have crashed an otherwise settled and sedate members club. Suddenly, the public and public services are competing to rise above the hubbub in the same space. Sometimes they are both singing together in harmony (witness social media responses to NHS reorganisation) and sometimes they are at loggerheads (the example of social media public opinion on the closure of the Remploy supported employment factories versus the welcoming of the end of their large scale subsidy and ‘outmoded’ vision of disability by some large disability charities).

The online activists, the debaters, the campaigners, the bloggers, the sharers, the discussers, the retweeters, the facebook frienders, they’re already there and it’s possible to argue they’re already better at this stuff than large organisations. Many want the world to be a better place than it is at the moment; some for personal reasons, some for political (both for small and large ‘P’), some with sectional interests. All having got the hang of social media are unlikely to remain passive, atomised full stops in the world of networks and influence.

There is a huge range of possibilities waiting in social media, all of which depend on people. Public sector organisations can harness the power of social media only where they can harness the action, respect and support of the people that make it up.

The challenge for the public sector is learning how to build relationships with people in social media, rather than just broadcasting at them in traditional vertical ways.

This leads to a question for public sector organisations: just how do can big established public sector bodies engage with these new bloods? What can you together that you couldn’t do separately? What would happen if the public sector just ignored this newly empowered public opinion? How do large organisations and activists work out who to snog, who to marry and who to avoid?

Come and have a go at finding out!

Snog Marry Avoid? Activists versus corporates in the public sector takes place on Friday, 28 September 2012 in London. It’s open to anyone who has ever sent a tweet, written a blog or thought about public services in the 21^st Century.

Book a place here

Mark Brown is the editor of One in Four magazine and the development director of Social Spider.  He is one of Community Care’s Top 60 social care tweeters.  He is @markoneinfour on twitter

Last night while procrastinating I was thinking about what we actually mean by mental health stigma, partially prompted by Channel 4′s ’4 Goes Mad’ season which begins today.  So I did what I normally do, I thought ‘out loud’ on twitter about it.

http://storify.com/MarkOneinFour/10-or-12-kinds-of-mental-health-stigma

Blogger Seaneen Molloy of http://thesecretlifeofamanicdepressive.wordpress.com/ is one of the UKs finest mental health bloggers. Her writing appeared in the very first issue of One in Four in Summer 2008.  To celebrate the fourth birthday of One in Four  we managed to catch her to ask what’s changed since One in Four began.

It’s four years since the first issue of One in Four.  What’s changed for you?

Pretty much everything!  Four years ago, I was a service user and I was still quite unwell.  I was on benefits, though still involved in activism and writing.  I wasn’t in a good place mentally and on the merry-go-round of different medications and treatments.  Four years later, I’m a mental health nursing student, and I was discharged from the mental health team eighteen months.  I’m more stable than I’ve ever been, on medication that works for me and managing to live my life pretty normally, with some adjustments.  I still write, though, and I’m still involved in activism.

Do you think things have changed for people with mental health difficulties in the four years since One in Four began?

Yes, and I think a lot of that has had to do with welfare reform.  I’m really glad anti-stigma campaigns like Time to Change exist.  I think people are speaking out more than ever on the topic of mental health.

However, whereas that should make it more acceptable to have a mental health problem, the current government is reversing that progress with its ongoing demonisation of those on benefits, and particularly those with mental health problems.  Four years ago, I was claiming income support and it gave me the time and the space I needed to sort myself out.  I didn’t have to go through punishing medicals and I felt supported.  Now, I think it’s so much harder to claim benefits and the entire culture has changed.  The attitude towards people on benefits is so much worse now.  Personal Independence Payments replacing DLA will also make it much harder for those with mental health problems to
get the financial support they need.

Likewise, the restructuring of the NHS has changed things for people with mental health problems.  Funding is scant and mental health services have suffered significantly in the wake of cuts.  It is harder to access treatment.  It’s also harder to access support, with things like legal aid suffering.  Charities are struggling too, so advocacy services are decreasing at a time when they are needed most.

What do you reckon the most significant events for people with mental health difficulties have been in those four years?

Welfare reform is the biggest event, I think.  The Health and Social Care Bill coming into law is extremely significant, too.

Do you reckon there’s still a need for what One in Four is doing?

Yes!  There is always a need for people with mental health problems to speak out!  I think there is a tendency in mental health activism to have figureheads, particularly in campaigns or publications aimed at the general public.  The best placed people to speak out are the ordinary people out there who are living day by day with mental health problems.  I think it is needed more than ever at a time when those with mental health problems are being dictated to and ignored.

I also think One in Four is one of the only publications that truly normalises mental health without glamourising it nor saying its a bogeyman there to steal your life.  It accepts that recovery is possible, but it also accepts that it’s not always the case.  It doesn’t write in a sensationalist fashion and often inspires a good old debate.  It often contains practical advice on living with a mental health problem and managing the little things that a lot of other publications wouldn’t even think about.  So, well done, and see you in four years…

You can subscribe to One in Four for just £10GBP per year to get four issues direct to your door!

Here’s a sneak preview…

Cover stories

Politicians in truth-telling shocker

A Parliamentary debate about mental health held some surprises

Can celebrities contribute to the battle against mental health stigma?

One in Four examines the case for and against celeb supporters

In a Welfare State?

Changes to benefits and the effects they will have

The flower of hope

Keeping hope and passing it on is one way through hard times

Features

Look back in Anger

Can we ever be comfortable with with the black sheep of emotions?

A minority within a minority

Belonging to a minority and having unmet needs can mean you are doubly ignored

Real life

Lifestyles of the not so rich and famous

Sometimes we have to make changes to our lives for the sake of our health

Schizophrenia and me

What’s it like living with a condition that is one of our biggest taboos?

Plus new, mythbusting and more…

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.”

Thanks!

What do you reckon?

Fancy pitching an article to mental health magazine One in Four? Editor Mark Brown tells you what he’s looking for.

At One in Four we love to publish writing from new voices.

Consequently, we love to get article pitches and do commission articles from pitches we receive.

As I’m the editor, you’ll be pitching to me.

So I thought it would be a good idea to give you an idea of what I’m looking for in a pitch:

1. Remember is One in Four is journalism FOR people with mental health difficulties

In your pitch I’m looking for a sense that you get the idea that One in Four is a magazine for people with mental health difficulties written by people with mental health difficulties. Tell me why your idea is of interest to other people with mental health difficulties.

Generally, One in Four is about getting on with life while having a mental health difficulty. We also have a dollop of opinion, a dash of discussion and a bit of stuff about services but all of them have to answer the question ‘what does this mean for people with mental health difficulties?’

One in Four is pretty much always through the eyes of people with mental health difficulties (apart from day in the life where we talk to various professionals).

In the case of interviews, we think it’s really interesting to have people with mental health difficulties interviewing people who either do or don’t have mental health difficulties about things relevant to readers.

2. Tell me what will be in your article

I need to know what kind of article you are proposing. Is it an opinion piece? Is it a piece of reporting? Will it include interview material? Where is your information going to come from? Does it tie in to any other big stories in mental health?

3. Give me an idea of what the headline and subhead might be

This will give me an idea of what you think the story is about so give me a headline that sums it up and a very short description of what the article is about.

4. Give me an idea of how long you think the article will be

We tend to work to 600 for one page, 1200 for two pages and 1700 for three pages approximately.

5. Give me a bit of background about yourself

Give me a very short biography and links to any other bits of writing you’ve done (including blogs) for me to have a look at.

If you do all five of the above it’ll make it much easier for me to see where you’re coming from and if what you’re pitching is right for One in Four.

It’s also worth reading the editorial principles of One in Four:

Statement of Editorial Principles

‘One In Four’ wants to widen understanding of mental illness and mental difficulty.

‘One In Four’ aims to challenge the stigma of having a mental health condition or experiencing mental health difficulties.

‘One In Four’ does not have a sectarian position on the treatment, diagnosis, nature and cause of mental illness or mental difficulty.

‘One In Four’ believes that there needs to be an authoritative source of information about mental illness and mental health difficulty, and that this source should deliver information to the widest range of people possible.

‘One In Four’ presents information and ideas about mental illness and mental difficulty in a measured, balanced format.

‘One In Four’ believes that media representations of mental illness affect both the perception of mental health difficulty in the wider community and the ways that people who have mental illnesses or mental health difficulties understand their condition.

‘One In Four’ believes that people with mental illness and mental health difficulty have the same interests and aspirations as people who do not have mental health conditions or mental health difficulty.

‘One In Four’ believes that helping people to access unbiased and balanced
information about mental illness and mental health difficulty is important, reinforcing positive messages and countering negative views, ideas and understandings.

‘One In Four’ presents positive images of people with mental illness and mental health difficulty and positive, aspirational information for people with mental illness and mental health difficulty.

‘One In Four’ believes the experience of mental illness and mental health difficulty should be situated within the realm of normal experience; that those experiencing these conditions should be helped to feel part of the wider community and that the wider community, through a greater understanding of these conditions, should look upon mental illness and mental health difficulty more positively.

‘One In Four’ believes that a professional, well-written, well-publicised and well- distributed regular magazine is key to guaranteeing the success of this editorial statement

All that done, read and digested get pitching to me at editor@oneinfourmag.org

Looking forward to hearing from you!

Mark Brown, Editor, One in Four magazine

William Gibson, famous ‘father of cyberpunk’ science fiction writer, in response to people congratulating him on the correctness of his predictions for the future, has been quoted as saying “The future is already here – it’s just not very evenly distributed.” (Or at least seems he said words to that effect, but that’s another interesting story.)

It’s an idea that I’ve found myself falling back on a lot over the last couple of weeks when thinking about mental health and changing attitudes.

When I was #mindtech (as detailed in this blog post) I was very struck by the different level exposure various attendees had to particular mental health ideas, services or ways of working.

How could it be, I wondered, that millions of people have been exposed to the message of anti-stigma campaign Time to Change during its four years so far of existence but a room of ten people interested enough in mental health to come to an all-day event during the working week precisely because they were interested in mental health had never heard of it?

When people were trying to come up with solutions for mental health challenges, how was it that so often they suggested things that were very similar to things that were already happening?

This led me to me to think about why there were such huge disparities between what between people’s exposure to various ideas, projects, initiatives and ways of working.

That’s where I hit upon it: “The future is already here – it’s just not very evenly distributed.”

When William Gibson used it he was trying to say that most of the things in his novels that seemed futuristic at the time they were published (big mega corporations, hackers, cyberspace etc.) weren’t in fact futuristic, but were things from the present that weren’t new, but were new to most of the people reading. Hacking had been going on since computers began to be networked and had origins in 1960s phone phreaking, using dialcodes and phone equipment usually used by repair people to fool telephone exchanges and make free phonecalls, create party lines and the like.

The point being, big jumps forward in thinking or technology don’t reach all people at the same time. That’s where we’re at with mental health.

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. Over the last decade there have been a number of successful projects and people that have answered the question ‘How do we do services and projects by and for people with mental health difficulties differently?’ by just getting on and doing services and projects by and for people with mental health difficulties differently.

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.

I think one of the shifts that I’m noticing is people with mental health difficulties moving beyond seeing their identity being defined by their interactions with services, moving beyond seeing themselves as ‘service users’ but as people in our right with complex needs, wishes, aspirations and ideas.

I also see a move away from the illness / cure model of mental health and toward a disability view of mental health where we don’t feel it’s acceptable to be judged as somehow ‘lesser’ because of the mental health challenges that we face.

When I read twitter or look at the madosphere (the mental health blogosphere as captured by TWIM ) I see fiercely clever 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 because they have moved into the mental health future more quickly than those around them – the future that isn’t distributed evenly.

But this isn’t where everyone is at. There isn’t a consensus view or a consensus opinion. There isn’t ever a point where you can draw a line and say ‘now we’ve reached the future’. The bits that will make up the future are already around us in the present.

When it comes to anti-stigma work and public attitudes to mental health, good information doesn’t permeate every group of people at the same speed. The same is true of good ideas.

It’s easy for us to assume that either everyone is on the same page as us or they are wallowing in the stickiness of the past, refusing to move. Change takes time and most people only notice it once it’s happened, not while it’s happening.

I think we’re seeing that sort of change in mental health. Not everywhere at once, but in certain places and certain situations. It’s a change that isn’t controlled by anyone group of people, and which might go in all manner of different directions, but is based on people with mental health difficulties taking control in ways that haven’t happened before.

What I think is extremely interesting is that this change isn’t just coming from tradition sources or traditional power blocs: It’s coming from people who see mental health as something worth thinking about who are coming from various walks of life and situations.  It’s not just doctors or self defined ‘service users’.

I’m trying to crowdsource funds to look at some of the ways that change is happening (you can click below to watch the terrifying video and try to guess my accent).

Sometimes it’s easier to see where things are getting stuck. (Personalisation I’m looking at you) but it’s often hard to see why they’re getting stuck. Sometimes it’s because, actually, things are fine as they are. Judging by the experiences of many people with mental health difficulties things staying the same because they’re great isn’t always the case in mental health.

Can you spot places where the future happening in mental health? Where and who do you think the future is coming from and how do you think it’s shaping up?

Mark Brown is the editor of One in Four magazine and the development director of Social Spider CIC.

I spent Friday at http://unconferencementalhealth.wordpress.com/ An unconference to discuss using technology to make mental health better at Coin Street Community Centre on London’s South Bank.

The idea of the day was to get a load of people together in a big room, get them thinking and talking then get them to split up into groups and come up with ideas for projects. It was similar idea to the Innovation Labs I attended a few months ago.

Once people had come up with ideas for what could be discussed and we began to divide ourselves into groups, me and a couple of other people realised that what we were interested in didn’t seem to quite fit into the broad themes that others had identified. We decided it would make more sense for us to set up a little breakaway group of our own and see if we could come up with some ideas to present back to the unconference as a whole at the end of the day.

We made a break for the roof garden. As people who are intimately involved in mental health innovation rather than coming to it as a new idea, we tried to dig down into questions about how we do mental health innovation, how we can make it sustainable and what innovation actually means in mental health.

Below are some of my observations  on the day and some of the things we ( Chris O’Sullivan ( @mentalcapital ), Katie Brown (@Re_connection) and Clodagh Miskelly (@miskellaneous )and me @markoneinfour) discussed up on the roof, sitting under a beautiful blue London sky.

Observation 1: There were less tech people than I would have expected

At an unconference about mental health and technology, I would have expected there to have been a larger contingent of people who were not mental health specialists but who were specialists in ‘doing tech’.

I think we sometimes have the idea that mental health is such a mystical and secluded area of endeavour that no outsiders will never get it. Tech people like solving problems. That’s why they are an asset (of which more further down).

Observation 2: Think big doesn’t mean make big things

Lots of people at #mindtech had big ideas.

This is brilliant. What we in our little rebel group explored a bit was what that actually means in terms of business models and sustainability.

The thing about things like apps and websites, that is tech that doesn’t involve manufacturing or giving people actual nuts and bolts bits of kit, is that the actual cost of development and delivery is more or less the same whether one person uses that app or website or one hundred thousand.

So, if you have a brilliant idea for an app and you spend £200.00 making it and twenty people use it and like it, you’ve spent £10.00 per person on making something positive happen. If a hundred people use it and like it, you’ve spent £2.00 per positive outcome.

The value of that form of tech is low-cost multiplication of impacts, like having a photocopier where you never have to refill the paper drawer or buy more ink. Once it’s built and launched, you should know exactly what you’re spending on each person who uses it and you should see the cost per person come down over time as more people use it.

At #mindtech I picked up a bias towards thinking about web applications or websites that would take on huge a weighty challenges and would provide all-singing, all-dancing solutions to them. This is a great and laudable aim, but it’s not how innovation or tech really works.

When presented with the question of how we can use technology to make the lives of people with mental health difficulties better, people can find themselves thinking about magic bullet solutions to make everything better which leads to very big, very broad project ideas.

The problem with massive ideas is that they have massive development costs. ‘ So what?’ you might say. The problem is that massive development costs massively increase the amount of people you need to use the thing you’ve created to make it worthwhile.  Or in other words, to get a reasonable return on your investment you need a large amount of users and outcomes.

To come up with a tech answer that would provide an all-singing, all-dancing solution to a series of broad challenges that people with mental health difficulties will be time consuming, complicated and costly. If it’s taking on a massive range of challenges faced by a massive range of people, then I’d say that the cost of developing that will mean that you’ll also need a massive amount of people to use it to make for a good return in outcomes from the cash you’ve spent (or, more usually, the cash other people have spent by investing in you. It’s rare to find people who risk their own in developing stuff in mental health.)

If you want to be all things to all people by doing general things, then your innovation is going to need to be used by nearly all people to make it worth the investment.

The point that we would raise is: What’s wrong with small projects for specific purposes and people?

Observation 3: Improving mental health services isn’t synonymous with helping people with mental health difficulties to have a better life

This is a fairly self-explanatory observation.

Observation 4: We are awful at market research in mental health 1

One of the things that really struck me at #mindtech is that for the most part we still seem to be tit-awful at market research in mental health.

Market research is, very simply, the process you go through to take a product to market. It’s simple A level business studies stuff.

You find out what value the potential market has, you find out what other people are doing or have done in the past, you look for gaps or opportunities, you come up with products, you find what would be reasonable to charge for them, you find out how you offer them to the people you hope will buy them.

What really hit home to me in our rooftop discussion a #mindtech was just how disconnected and jumbled up this process is mental health. I was asked by John Loder of The Young Foundation to come and talk to the group he was helping out who were looking at ways to change perceptions of people with mental health difficulties. When they explained that they thought it would be great to do a big campaign collecting peoples stories and sharing them via social media to reduce stigma and that it could lead off with famous successful people through history who’ve experienced mental health difficulties I had to congratulate them. In the space of a few hours, a group of ten folk who’d never met before had run through all of the issues and ideas and possible solutions and had, in essence, come up with a plan that was pretty much the same as Time to Change’s plan for the first three year phase of their existence.

This is awesome, and shows that from a standing start, there are solutions that people will hit upon following logic, but that’s not really where the process of innovation begins.

Our small rooftop breakaway group was rooted, to an extent, in the fact that we have been doing that market research, we do know what others are doing or have been doing. In essence, our starting point was different. We spend our days thinking and working on projects that are about innovating and to do that we need to know what other people have done and are doing because that’s how we learn and how we make sure the time and resources we have can be used to their greatest value.

At present there isn’t really a primer in mental health innovation. I’m trying to raise the money to write and research one, but at present there isn’t really an easy starting point.

The first rule of Fight Club is you don’t talk about Fight Club. The first rule of mental health is that next to no one knows what anyone else is doing or has done in mental health.

There is isn’t a trade journal for mental health innovation, there are few websites, there isn’t a network. There’s some people doing stuff.

As Chris O’Sullivan suggested, we need a way of somehow creating a repository for stuff about mental health innovation so that we don’t reinvent the wheel.

For me, I wonder whether the default expectation that the state and the NHS will be the ultimate solution to the challenges that a mental health difficulty presents actually prevents us from seeing mental health innovation as an intellectual area in its own right.

When it comes to people with mental health difficulties trying to sort stuff out it sometimes feels that rather than speaking to each other, we go straight to speak to services. I wonder if we mirror that in our thinking about projects and innovation by just talking to funders and decision makers and failing to actually speak to our peers?

More broadly than that, at a very basic level you can’t innovate without knowing what’s happened before, which makes me think some thing even more intriguing: Maybe all of these ideas really were new to people who were used to working within services and structures? What seemed like a revolutionary eye opener to someone new to this notion of innovation and change in mental health may have been what had me sticking my hand up and saying ‘that’s great. There’s been projects that have done similar before.’

Innovation of course doesn’t need to be a new idea. It can be a very old idea applied in a new way. What to someone all wide-eyed with the rush of excitement that comes with first exploring a new ideas  sounded like me pooh-poohing and saying ‘it’s all been done’ was actually me saying ‘the paths that have been explored in that direction have been interesting, explore further’.

At a more fundamental level, most people don’t know what people with mental health difficulties actually want, because they’ve never asked them. More broadly, most people don’t have a broad idea of where mental health difficulty fits into a life.  We don’t see people with mental health difficulties in demographic terms.   It’s still ‘take your medicine’. It’s like identifying that a) people like tea b) teapots sometimes leak and then trying to issue each person who likes tea in the country with a galvanised steel tea funnel which needs to be fitted to their tea cup by a qualified fitter.

The point we would raise is: How are people going to get ‘up to speed’ with what’s been happening and what does it say about the current situation that they aren’t?

Observation 5: We are awful at market research in mental health 2: The mental health pound

In our roof top breakout we were thinking a lot about sustainability, or to put it more bluntly, where’s the money?

What we realised is that in a situation where 82% percent of mental health services are still commissioned by by the NHS, it’s going to be a challenge to unshackle innovation in mental health from the particular needs and wishes of existing mental health services. They have the cash. They may not think they do, but they do.

This set us thinking more broadly about models for sustainable projects and sustainable innovation in mental health.

For something to be economically sustainable and to be able to offer a financial return on investment it needs to do the following: “it needs to sell people something they want, on terms they understand, at a price they’ll pay”.

Again, so far, so A level business studies. But, this gets complicated in mental health. Who really is the customer for mental health innovations? In other words, who is actually the consumer?

When we’re innovating we tend to think first of selling it to funders in mental health. We tend to think about selling to people with mental health difficulties last.

Let that sink in: We think last about selling our projects to the people who will use and benefit from them.

What kind of a sustainable business model is that? Think of the customer last?

What we realised is that no actually thinks of people with mental health difficulties as consumers in the classic sense, as people who can vote with the feet, purses and wallets.  We didn’t even know any stats about how people with mental health difficulties actually use tech like the internet and smartphones, which you’d think would be important for something like #mindtech.

We realised that a major barrier to investment from beyond the NHS was the fact that we don’t actually know what people will and won’t pay for and at what price, because we’ve never found out. This set us wondering: What is the value of the overall mental health economy in the UK? How much is actually spent? We can get figures for NHS spending and perhaps social care spend and maybe charity spend. What about self funders? What about things that people with mental health difficulties spend their money on to help them to feel well?

Just what is the value of the mental health pound in the UK?

This may seem like an odd question but look at it in these terms: We complain about the under-investment in mental health, by which we usually mean the lack of money collected via taxation that in given to mental health services delivered by the NHS. If that is going to be increasingly squeezed by recession, what steps can we take to bring other investment into mental health and specifically mental health innovation?

The money has to come from somewhere (although there are ways of making money go much further by using it differently)

The NHS can be an excellent catalyst in mental health, but it still holds too many of the reins to make it possible for innovation to be truly disruptive.  Very often it’s the people making the investment decision who are most challenged by radical innovations in mental health because those innovations don’t just modify how they do something but, in the way that the recovery model conflicts with the medical model, they modify what that something is.

In the spirit of disruptive innovation we would ask: Just what is the value of the mental pound in the UK and why don’t we find out what people want and would pay for?

Observation 6: Everyone can’t use it so no one can?

One thing I found really interesting at #mindtech was the idea that using a tech platform that more people use is better than using a specific platform that you definitely know some people use. When one of the introductory speakers was talking about Buddy, the mood feedback system, they said that they had decided against creating what they did as a smartphone app because many of their potential users don’t have smartphones.

This seemed to be translated by most at #mindtech into the assertion that most people with mental health difficulties don’t have smart phones therefore projects should be only be done on the platform that most people have access to, so in the case of all of the ideas that came out of #mindtech that meant doing websites.

In response to the point about smartphones, I tweeted that maybe we could stop whinging about people with mental health difficulties not having smartphones and just give people one if they don’t have one. Chris O’Sullivan pointed out that there are projects that have done just that and that it was a far cheaper thing to do than you’d imagine.

I think everyone who came to #mindtech passionately wants to change things for all people with mental health difficulties and this lent a utilitarian tone to many of the projects and ideas: the greats possible good for the greatest number of people.

I think that this either comes at tech innovation from a services improvement angle (How can we make tech part of services so services run better?) or an information provision angle (How can we give lots of information to lots of people?)

What was left out, I think, was the idea that tech is elective: You chose what you do and don’t choose to use. In existing services even the most simple forms of technology are elective; for example, some people choose to telephone to make an appointment, some would choose to do so in person, others might choose to use a different method if it was available.

There was still an air of medical thinking hanging over #mindtech, at least for me. There was a sense that the (probably accidental) consensus in some of the groups was how do we do a project for people to use? rather than how do we do a project that people will choose to use?

Yes, it’s obviously wrong to make the only way to book an appointment for your services an i-phone only app. That would be stupid. However, what if there is something that i-phones can do really well that an application related to people’s mental health might make use of?

Just because you can’t replicate the experience of using something for all people doesn’t mean that it should be discounted. My GP doesn’t know my email address because the practice has never asked. For my GP to send me emails rather than letters would be great for me, would save them money on postage and would be all together more efficient. I’d love it. It wouldn’t mean that alternative forms of communication shouldn’t be available. By the access logic, there’s no point in my GP exploring sending emails because we know ‘some’ people don’t have email addresses.

The point I’m driving at is that the idea of being able to build tech solutions to challenges that can be applied universally from day one is flawed.

The observation I’d feed back: Specific projects that do specific things with or for specific people are cheaper and less risky than big ones that do lots of things apparently for everybody

The observations we actually presented back to #mindtech (more or less)

High cost developments that need to be rolled out across thousands of people to justify the money that has been spent on them just mean that, counter intuitively, far more money is being risked, even if the universal nature seems to make them a better bet.

The NHS is rich with assets. Those assets are people and their knowledge, skills and ideas. At present they are sitting like funds in a dormant bank account, their additional potential to unlock mental health innovation unused.

Similarly, there is a huge amount of people with technical and business skills who want to make their communities a better place. These are assets that are not currently drawn into the world of mental health either.

Rather than bringing people to mental health tech projects that have been made by people with ‘their best interests at heart’, we would ask how can we take tech and mental health assets to people?

Instead of keeping assets locked up in statutory services and using them only to draw further funds into those services, instead of reinventing the wheel or do-gooding on behalf of people with mental health difficulties, why don’t we work on ways of giving knowledge and tech assets to existing groups to find ways of using those assets to come up with projects that meet their mental health needs?

Or even to come up with micro enterprise ideas that involve coming up with services that can be sold or invested in?

We’d suggest small amounts of money can go a long way to supporting the process of innovation for solving problems for small groups of people and that fostering small innovations in communities in mental health and tech might actually come up with more ideas that can be developed or tried in other places or with other groups.

People in communities may not have specialist knowledge but they have ideas and experiences. If we are sitting on a huge store of knowledge and expertise then we should be looking to spread innovation to community level so that when mental health and tech ideas happen they happen with the full involvement of the people who are supposed to benefit from them.

Big isn’t always better and for innovation to be disruptive and really change things it needs freedom to happen. Improving services is awesome, but that’s not the only thing innovation in mental health can do.

There’s a lot more that I could say about what we were discussing up on the roof, but I think that’s enough to be going on with. Hopefully Chris O’Sullivan ( @mentalcapital ), Katie Brown (@Re_connection) and Clodagh Miskelly (@miskellaneous ) will be blogging or writing up some of their thoughts.

Mark Brown is the editor of One in Four magazine and the development director of Social Spider CIC.

Article history: Updated 1/4/2012