“The first rule of CAMHS club is that no one knows anything about CAMHS club”: Helping young people to prepare for their time in Child and Adolescent Mental Health Services

Everyone wants to sort out child and adolescent mental health services (CAMHS), but where to begin?  Mark Brown looks at the way that the web app Doc Ready is being developed to help young people with their journey through mental health services.

‘What can we do about child and adolescent mental health services (CAMHS)?’ is a question that is seldom far from the lips of both those who use these services and those who care about those who use them.

CAMHS are specialist NHS children and young people’s mental health services that exist to treat or support young people up to the age of 18, so cover a window in people’s lives that roughly corresponds to their school years.

Early intervention seems to make political sense.  Nip problems in the bud, the logic says.  If we get to the root of the problem when they’re young ‘uns having a bad time they won’t grow up to adults having a bad time. As such, CAMHS is the area of mental health care that attracts the most attention from those outside of the mental health world.  It presents, in the popular mind, a way of safeguarding opportunity for the future by taking definitive action.

As with many other areas of mental health, CAMHS services across the country often have to cope with rising demand and falling levels of resource.

According to research by YoungMinds released exclusively to ITV News on 27th July 2015  “since George Osborne became chancellor five years ago a total of £85m has been lost from the budgets of mental health trusts and local authorities”.  The research, derived from Freedom of Information requests from YoungMinds to 165 Clinical Commissioning Groups, 97 local authorities and 37 mental health trusts, shows 75 per cent of mental health trusts across England froze or cut their budgets between 2013/14 and 2014/15.

Prior to the general election of 2015, then Deputy Prime Minister Nick Clegg announced a commitment to spending £250m a year over the next five year Parliament on CAMHS.  The extent to which this commitment is to be honoured is not clear, as the emerging picture seems to point to loses of funding in some areas of activity with ‘new’ money funding new commitments.

What is clear is that each year new young people are referred to CAMHS services and more make the transition from CAMHS services to adult mental health services.

From the outside, it looks like CAMHS is a simple proposition. A one stop shop for young people’s mental health and wellbeing needs.  In practice, as with much in mental health, the picture is much more complex.  Some young people will be referred to CAMHS services for assessment by their GP. Others may be referred to CAMHS by teachers or school staff, health visitors, school nurses, social workers or youth counselling services.  Some of these referrals will be sought by a young person’s parents or carers, other will be deemed necessary by one or more agency involved in the child’s welfare.

At present we don’t ‘know’ exactly how many young people join CAMHS services each year in total.  We do know a variety of other things, though, such as extrapolated levels of demand in each CCG area via the National Child and Maternal Health Intelligence Network.

There are NHS CAMHS services, which are providers of CAMHS services, then there are a variety of different ways that CAMHS might be commissioned.  Most of these are NHS bodies, but some aren’t.  There are also non-NHS providers of of services as part of CAMHS.  There is not one standard offer for CAMHS and different young people will access different services based on the challenges they are facing.  They might see a number of professionals with a variety of different roles and different professional backgrounds and approaches.  Is your head spinning with complexity yet?

Now imagine you are young person trying to access such services.  They might be services you have been desperate to access after a long wait.  They might be services that you don’t know why you’re accessing, the referral made on your behalf by an organisation that is concerned about your behaviour or welfare.  You might have been waiting a long time for an assessment.  You might have been waiting even longer for a referral to be accepted by a service provider.  Your parents or carers might have explained everything to you or nothing to you.  Your parent, parents or carers might not know enough about CAMHS themselves to be able to explain.

If there are two words to describe the experience of moving through CAMHS they could well be ‘confusing’ and worrying’.

 Doc Ready repurposed

In contrast to other areas of mental health, there has been a flurry of interest around the potential for internet-enabled devices and apps and software that run upon them to make a real difference to young people’s mental health.  This is, in part, based on the misapprehension that the web and mobile devices are more acceptable to young people because they are ‘new’ and that ‘this internet thing’ is what young people want.  In practice, the web and portable devices like tablets and smartphones are increasingly accepted as part of the lives of people in England in general.

The lens focusing on prevention  in mental health, coupled with the search for new and cost effective solutions to growing demand and dwindling resources, has opened the door for some digital experimentation in the provision of services around mental health to young people that has not been present in services for people accessing adult mental health services.

In 2013 a partnership of Futuregov, Neontribe, Enabled by Design and my own company Social Spider launched Doc Ready, a tiny web app that helps young people get ready to visit their GP for the first time to talk about their mental health difficulties.  Funded by the Paul Hamlyn Foundation, Doc Ready was one of the six projects to grow from the Paul Hamlyn / Mental Health Foundation Innovation Labs process.

Doc Ready began as an idea for an app called ‘See it my way’.  Coming out of young people’s experiences of GP services, their initial idea was for an app for GPs that would convert young people’s language into GP language.  During a second Innovation Lab this became an idea for an app that rather than trying to modify the practice of GPs, which is a difficult task at the best of times, would help young people to prepare what they wanted to talk about before they got to their appointment; maximising the potential of that appointment including the kinds of information a GP would require to understand what the young person in question was understanding.

Now, working with North Staffordshire Combined Healthcare NHS Trust three of the initial Doc Ready partners are talking the Doc Ready approach to helping young people with their passage through CAMHS.

Taking the same principle of putting the power of preparation and knowledge in the hands of young people, this new iteration of Doc Ready, called CAMHS Ready launched this week, will help young people to prepare for their sessions with CAMHS professionals, but will also help them to understand CAMHS and its various structures.

Maintaining the same co-design ethos as the original Doc Ready, this iteration tries to see the journey through CAMHS through eyes of the young people making it and to answer the questions that they might have along the way.  As importantly, the opportunity to prepare also offers reassurance in what can often be a bewilderingly arcane set of services.

At present, one of the challenges with providing CAMHS information is that often individual CAMHS services themselves are unsure of the best ways of providing this information; opting for providing large amounts of information without being able to ensure that it is there at the right time for the young person who may require it.  Given the level of regional variation and the ways in which the direction of travel for health services will certainly accelerate this variation over the coming five years; attempts at national information about CAMHS tend to be generic and to provide little of the detail that would reassure young people who will have specific worries about specific services they are accessing.

Like Doc Ready, CAMHS Ready provides advice for young people, but also helps them to create a checklist of things they want to talk about at their session. As with Doc Ready, CAMHS Ready is designed to work on phones, tablets and computers.  It doesn’t need to be installed on a device because it lives on the internet, making it accessible to any young person at any time as long as they can get an internet connection.  Taking a similar focus to Doc Ready, CAMHS ready helps young people feel more prepared and less anxious about visiting, and provides a simple way of getting conversations started open up conversation, helping CAMHS Staff and young people to get the most from their visit.

The partners are seeking other CAMHS services who would like to develop their own version of the app specific to their services, staff and locality.

Given a fairly strong road test of Doc Ready approach (the original app was evaluated by Mindtech at the University of Nottingham), and given its status as a web app rather than a downloaded piece of software which means that there is no messy pushing of updates to individual devices, it seems the idea that began with some young people’s problems with GP consultations might have managed to come up with something that might help in a little way to address a tiny problem that young people who use CAMHS currently have, and which will help those who join CAMHS each year.

Obviously, something like a CAMHS version of Doc Ready can’t solve the challenge of an overall drop in funding from central government for the commissioning of young people’s mental health services.  What it can do is help to make sure that the time resources and knowledge resources of CAMHS services can be best deployed for someone who is currently in need of their support by helping them to get what they want and need out of the experience.

I like the Doc Ready approach; not only because I was involved with its development.  One app can’t solve everything; but one app can, if you get it right, solve nearly everything about one very small and particular problem.

If we’re having to fight for every contact a young person has with CAMHS; it makes sense to try to make sure that every contact is as useful as it can be.

CAMHS and the network of services it covers are only going to get more complex and more creaky over the next five years.  Helping young people to navigate these increasingly complex and stretched services to their best advantage is in everyone’s interest.

 

Mark Brown is development director of Social Spider CIC.  He was involved in the development of the original Doc Ready app. He is @markoneinfour on twitter. Mark is currently running a digital innovation lab around young people’s mental health and wellbeing and on a digital CAMHS project, both in Leeds, although he actually lives in London. 

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“Your policy is my life” – What could clinical psychology do to change the world?

The following is the text of a speech given by Mark Brown to the ‘Clinical Psychology: Beyond the Therapy Room’ conference in London on Friday 12th June 2015.

A video of this speech can be found here.

I’d like to begin this morning by saying that right now there’s a lot of people losing hope out there.  If clinical psychology is the industry of the promotion human wellbeing, there’s a lot of people in need of your good and services out there.  I’m a person who experiences mental health difficulties.  I’m also someone who gets to sneak into situations like this and make some points.  This morning I’ve been asked to talk to you about what happens when Clinical Psychology gets out of the therapy room.

So first, a little scene setting. Imagine this as the pre-credits sequence where the camera zooms across the landscape giving us a sense of the scale and scope of the story we’re about to see unfold.  In just what kind of a land is this therapy room situated? Who are its inhabitants?  What the story?

You can hum your own suitably stirring theme music.  Or perhaps the Benny Hill theme if you’re not as impressed with the direction I’m taking.

The scene

People with long term mental health difficulties are some of the most vulnerable in society.

And we hate it.  We hate feeling that so much of our life depends on policy made in Whitehall or discussed in No. 10.  We can’t pull off a magic trick and become not-unwell.

Even when we’re doing well it’s often because we’re getting the right help.  That isn’t an argument for the removal of that help; it’s an argument for its continuation.  While mental health as an issue has developed a growing profile in public debate; little of it has risen above ‘be nicer to people with mental health difficulties; moar hospitals!’.

Whether the focus on mental health sticks will depend on whether our new government cares enough about mental health to do the one thing that government can do apart from trying to pass laws.  It depends on whether they are prepared to spend money.  It’s easy to look like savings are being made if you find ways of shifting costs off the balance sheet.  It’s always possible to shift the costs of not investing in mental health and mental wellbeing off the balance sheet; to say that it’s the fault of individuals for not getting better, not making the best of what is on offer.

Mental health isn’t just something that is about treatment.  For those of us that experience difficulties with our mental health, they’re something that tend to seep into all areas of our lives.  In common with other disabilities, mental health difficulties tend to make many areas of life more difficult.  They ways in which those areas are difficult depend on the world that we live in and the people around us.

Strong social protections; benefits that offset the greatest hardships that come from having difficulties with your mental health; strong rights to treatment, support and to quality of life: all of these things safeguard the wellbeing of people with mental health difficulties.  While mental health difficulty might happen in our heads; the solutions and causes are not purely in the individual.

We know that having a mental health difficult means that you are more likely to end up poor.  What it means to be poor changes depending on the prevailing political and social winds.  Mental health difficulties can often make you feel vulnerable because when you are having difficulties you are more at the mercy of those prevailing winds.  Having a mental health difficulty makes things more difficult.

The fact that with the right support, help and changes in circumstance some of us will be able to gain and stay in paid employment is used to suggest that others of us are malingers or just aren’t trying hard enough.

Many people with mental health difficulties have lost the sense that it is possible to trust this, or any, government to put their rights on the agenda.  People have seen the accessibility of treatment they need reduced; seen the benefits they have been receiving both in-work and out of work dwindle; seen the fabric of local voluntary and statutory services and organisations fray and in some places collapse.  Mental health began austerity in a condition of under-investment.

When someone first falls ill or is having problems our automatic response is to think ‘there should be someone to help with this’ but increasingly, as cuts hollow out social protections – regardless of whether they are provided by the private, public or voluntary sector – people are finding that the help that every thought should be there just isn’t.

What I’ve seen, and experienced myself, is that everyday life with a mental health difficulty is often a struggle. One that isn’t obvious; isn’t headline grabbing; but one that makes a mess of lives if there isn’t support, help and protections.  And those messes, and people’s lives, get worse.

When we’ve lived with mental health difficulties for a while; our hope is that the crises will be further apart; that help and support will make sure that we don’t lose sight of what we want our lives to be about.  When we’ve got the right treatment; the right support, enough money to live on and a balance between stretching ourselves and feeling safe – even then we’re often just managing to keep our heads above water.  The margin between doing OK and not doing OK can be very slim.  Even a tiny policy change can tip life from being manageable into life being impossible.

Even when everything is in place we can still become ill.  Mental health difficulties tend to be treacherous like that.  When that happens we need to feel that it’s possible to access help quickly before everything that we’ve managed to build up is washed away.

But remember: mental health treatment and support needs to a be a partnership.  You can’t ‘do’ mental health to people.  It’s not a ‘pull your socks up’ situation.  This government needs to rebuild that lost trust if it is to get anywhere with people with mental health difficulties.  As much as we may want to be self-reliant, we also have to rely on the society in which we live.

Many people feel this acutely. People are scared and worried that what little security they’ve managed to achieve in the face of mental health conditions that make a mess of the things you might want to do can be swept away by a single policy announcement, an edit to a cell in a spreadsheet, a policy focus on one aim rather than another.

Your policy is my life.

If the scale of cuts suggested is to put into action; the human cost of those cuts aren’t collateral damage.  The human costs of those cuts are the core business of any government: the duty to protect its citizens or subjects.  And for many who feel closest to those cuts, the prevailing wind is bringing not a warm breeze of spring but a harsh chill of a never-ending winter.

The Frontline

So, our scene is set, some, not all, of the people of the land are losing hope: but what is the role of our glorious saviour Clinical Psychology?  Where does she fit?  Discussions about mental health and wellbeing during times of austerity become discussions about preserving the frontline.  We’re watching ideas of a mental wellness services slowly changing into a mental illness services and then often not even that.  It’s all about the frontline.  Save the frontline. Hold the frontline.  But just where is the frontline for mental health and wellbeing?  Can we really, given the fact that frontline is a military metaphor really reduce the battle against mental illness and the battle for mental health to a series of of dug in trenches where we battle fixed enemies until they are all gone?

I think the frontline in mental health is a bit more complicated.  the frontline of wellbeing even more so.

Is it in the mental health inpatients wards across the country where treatment is provided for people who are very ill?  Is it in the community mental health teams where people’s needs, in theory, are met in the community?

Is it in GPs surgeries where people first turn when they feel unwell?  Is it in social services departments where people receive help and support with the complicated challenges that can come with mental health difficulty?  Or in social care services?

Is it in the community organisations that provide support, advice, encouragement and inspiration to people with mental health difficulties?  Is it the HR departments of companies trying to find the best ways of supporting their employees who experience mental health difficulties?

Is it at neighbourhood advice services where many people look for support with issues in their life that affect their mental health?  Is it in the consulting rooms of therapists or counsellors where people explore what’s troubling them?  Or in the case work of advocates and the meetings of service user representatives?

Is it in Back to Work providers and JobCentres, or in benefit decision making bodies?  Is in the offices and premises of small and large mental health charities, or in the activities they carry out?

Is it in the media, or the communications departments of places that provide services and support?  Or the research teams and in the campaigning groups that draw sustenance from them?  Or the advice and support helplines and websites and new technology ways of keeping in touch?

Is it in Accident and Emergency departments where people find themselves when things go wrong?  Is it in the places where people with mental health difficulties meet to try to find solutions to their own problems? Is it in the police stations where people end up when they’re sectioned?

Is it in our homes, or in our workplaces or in the relationships we have with people?

The frontline is everywhere for mental health and wellbeing because mental health and wellbeing happens between people and the environments in which they they find themselves, backwards and forwards, all of the time.

There is nothing that doesn’t have a bearing on mental health and wellbeing.  For clinical psychology; the entire world is outside of the therapy room.  But what should you do?  The therapy room is safe.  People pay you money to do a job and you do it.  But you want more.  Your conscience tells you that there is more that can be done. But what?

We always vote for ourselves

If clinical psychology wants to step out of the therapy room and provide a further service to the people of this country and to the people of the world it needs to work out where best to help and how best to do so.

Clinical psychology is not just a field of work; it’s also a field of knowledge and experience and skills.  All of you who can describe yourself clinical psychologists have tied up in you a huge pile of different resources that can be put to uses other than the thing you get your pay cheque for at the end of the month.

Through the work we have been trained for, and the work we feel confident in carrying out, we shall redeem the world from its fallen state.  If we just had more clinical psychologists, then eventually we wouldn’t clinical psychologists because everyone would be better.  Eventually.  While it’s entirely understandable to feel that the work we do is indispensable and to champion its role in the world, it’s not correct to see that as being the only way that we can use our skills to make change happen.  In part this way of thinking comes from being unable to see what clinical psychology might contribute beyond staying in the therapy room where it’s comfortable.

There’s an interesting thing that happens.  I’ve seen it happen in every single discussion of the future of mental health, from dystopian visions of psychologically tortured ghost people walking mechanically around an ultra-consumption based techno dictatorship to discussions of a post scarcity future where every person can unlock the inner potential, overcome their trauma and awake each morning as a fully actualised human being, leaping out of bed to carry out superhuman feats of compassion and productivity and artistry.  Regardless of the tone, regardless of the context, the conclusion is the same: what we need is more people from our profession doing more of the job our profession does.

But to what other ends should we put those resources to?  How would you decide?  I think there’s a number of things we need to think about.  Clinical psychology, and the wellbeing of people both collectively and individually do not happen in a vacuum.

Let’s start just outside of the therapy room first: What’s out there, if you edge open the door and peer through a little gap? The organisations that people work in, of course.  Which are also the organisations that people use.  And people are losing trust in the idea that they might ever have lives that are better and are looking at lives that seem to be getting progressively worse; they have lost hope.

Just outside the therapy room door

If we do ask questions about services in which some of us work we often ask them in terms of ‘how can we make sure this services helps people more?’ When we’re talking about hope, I think it’s more instructive to ask ‘In what ways might this service make us worse by removing our hope that things can change?’

Regardless of what services an organisation is providing, it has the capacity to either give hope or take it away.

In many senses, people take a risk in hoping that services will be able to help them. In other words, they place their trust in services. So then, hope that you can be helped is an act of trust, and based on my attempt to define hope above, the extent to which you receive positive reinforcement of that trust defines how likely you are to remain hopeful.

Services often forget that while their job might only begin when someone arrives at their door, it actually represents the end of a journey of hope for the person who has just arrived in front of them. They have turned up precisely because they hope that a service will be able to help them.

From that point on, the service can either support and nourish the hope that someone feels, or it can take a series of witting or unwitting actions to stunt or completely snuff out that hope.

Services can dispel hope in thousands of ways. One rude member of reception staff can undo a week of therapy. A couple of unreturned telephone calls can leave someone feeling ignored. A badly worded letter can give entirely the wrong impression of what might happen.

All of these things are rarely picked up in satisfaction surveys, because satisfaction surveys only ask whether the service is serving its purpose, not how it serves its purpose.

They’re the cumulative effect of services that forget that they’re actually working for people. This kind of thing happens because there is diffused responsibility for making sure that people have the best experience that they can of a service and what it offers. They are especially prevalent in services that themselves feel lacking in hope, services that feel ignored, overworked, misunderstood, unrewarded. Services that don’t believe things can be better tend to communicate that belief to the people who trust in them to make things better.

When individuals raise these issues, the despairing organisation rejects them as criticism rather than recognising them as offers to provide advice about ways in which they can stop destroying hope.

Low expectations and unreasonably high expectations can remove hope from people: Low expectations by actually arguing against someone’s hopes and forcing them to question them; unreasonably high expectations by ignore the realities of someone’s life and again forcing them to question their hopes.

When an organisation, usually by imperceptible increments, begins to slide into despair itself it actually reduces its ability to be effective by managing to destroy hope rather than creating it.

So, clinical psychology can’t just relax and say ‘we are but a cog in a machine’.  It needs to be asking ‘what does this machine do? Who made it? Who is controlling this machine? Is this even the right machine at all?’

Helpers not leaders?

One of the challenges of thinking about how clinical psychology might better serve society is that it’s very hard to think of yourself as a helper not a leader.

More than ever we need people who can bring understanding into the mainstream of trauma, of difficulty, of sadness, of frustration, of despair, of prejudice and marginalisation and being thwarted at every turn in the attempt to have a better life.  We need people who help people with power to understand not just the positive effects of their actions but also the negative.  We need people to put the humanity back into the understanding of the effects of policy and practice.

We need a new generation of public professionals and a resurgence of older ones.  We need people powered by psychological knowledge who can hold the world to account and say ‘hang on, stop acting like utter dicks’.  In a country that seems to many to either be becoming more polarised or more unequal depending on who you talk to; we need people who can speak up for people’s wellbeing.

We need, more than ever, public professionals who can help us to understand and public professionals who can help support the legitimacy of the problems raised with society from those with least power and with least other forms of  influence.  As professionals and as people we need more who:

  • Listen,

  • speak with respect and care,

  • know their subject,

  • don’t talk about the benefits of their work without discussing its limitations,

  • don’t think they know everything,

  • who are proud of their job but not blind to its failings

  • and who are advocates for the best of possible worlds by understanding where things are worst.

One of the first things that needs to happen is that clinical psychology needs to be of this world.  It needs to be rooted in the actuality of people’s lives.  People are glorious, confusing, challenging, infuriating, amazing things.  It needs as much as possible to, as we say in design, get out of the office.  It needs to hang out with people.  If you know me as @markoneinfour off of twitter, you’ll know that social media are great places to do some of that hanging out.

Clinical psychology is all about people; but ask yourself: how close do you actually feel to the people your profession is attempting to help?

 One of the things I’ve noticed is that often someone will meet a particular group of people who experience mental health difficulty or a particular approach developed slightly outside of the mainstream of standard practice and that, for them, will become their ‘answer’.  They get stuck with one perspective that they feel replaces their old, authoritarian or inflexible model with a new one.  This might be their first exposure to the pain or the enthusiasm of some people who seem closer to the problem than you do.  The wish to do right be these people grows in fervour.  ‘I’ve spoken to service users and this is what they tell me they want,’ the newly converted radical will say.

But people get stuck having found their radical path.  They change from someone questioning to becoming someone dogmatic.  They become fixated on the the truth and rightfulness of this alternative, the ‘user perspective’, forgetting that this is one view amongst many and that people’s views about what is best or what is desirable won’t be fixed over time.

When we don’t feel an authentic connection to the people we are trying to help we are subject to idealisations, to fantasies, about what they might want and how they might be and what they might find helpful.  We are subject to our ideologies overtaking our experiences.

In an area of activity that is all about people, we sometimes for entirely honourable reasons manage to leave people out of our thinking.  In our discomfort with our paternalism, with our authority we seek to salve our conscience by promoting one ‘service user’ cause or another, getting stuck in a position of trying to advocate for what once was a radical idea but which has now been superseded by other ideas.

Gap between politics and practice

In mental health I’ve met many people who battle on a daily basis with gap between their politics and the practice.  That’s room for tamble thumpers.  There’s also room for smooth influencers.  And committed researchers.  And people who do any of the tiny day-to-day things that add up to making profound changes happen.

In mental health I often see a lot of assertions about how the world ‘should’ work which are met with equally emphatic responses about how the world ‘does’ work.  Often this obscures how something could be made to work.  Often in mental health our head tells us one thing but our gut tells us another.  I’ve always been surprised by the amount of people who have told me that they’ve never been able to reconcile their political beliefs with what they do or have experienced in mental health.

We can often find our discussion agreeably taking flight to the realm of principles and abstractions, taking refuge in debating room victories and bracing academic bunfights while out in the real world people try to live decent lives in a world of broken systems, ever increasing pressures and real unmet needs.  It’s easy to win an argument in abstract and easy to fail someone in real life.

A potential way through this is using wellbeing as a way to understand the effects of decisions, events and policies on people.  But,  I’m sorry folks, but we’ve been losing the wellbeing war, especially in mental health.  The chief medical officer Sally Davies declared last year in her annual report that she refuses to take a leap of faith and to trust in the idea that attempt in public health to raise the wellbeing of all will reduce the amount of new cases of mental condition.  Public mental health, where and if it remains after local authority public health cuts has become about targeted interventions ‘we know work’.  Fair enough you might think, until you realise that these targeted interventions are interventions you’ll get if you like them or not based on whether you’re on a list of people ‘at risk’. And as someone at risk; you probably won’t be getting a choice.

We’ve losing the potential for wellbeing to be used as a prism for understanding the complex effect of people of living in what used to be called late capitalism in an austerity committed society.  We’ve losing the chance of being able to evaluate the potential impact of public policies on the day-to-day wellbeing of individuals.  We’ve decided, it seems, that it’s OK to make someone’s life a misery on purpose if we have ‘the angels on our side’.

Psychology gone bad

We live in a country that is increasingly keen to use psychological techniques but not keen to measure the psychological implications of those techniques.  Travelling through the worlds of disruptive innovation and public policy as I’ve been doing for the last twenty years, first as a recipient of support then as someone who has been striving to make things happen, it’s been impossible to move for dubious applications of psychological principles and ideas.

It often seems that once you belong to category of person who is considered to be a social problem, you are fair game for the deployment of a range of dubious and potentially damaging psychological tricks and schemes.

 We’ve seen the weaponization of shame as a means of reducing A+E visits.  We’ve seen the process of helping find work increasingly absorb the worst of elements of the coaching world.  We’ve seen nudges and gamification and activation all seen as technologies for the promotion of particular behaviours.  We seen the rise of interventions, projects, programmes and products that are only measuring their positive effects; the extent to which they are proving successful or unsuccessful in achieving their stated aims but are failing to record or consider the collateral damage to individuals and to communities that results from such activities.  The old medical joke about the procedure being a complete success apart from the patient not surviving rings true too often.

Psychology still has a lot of power if it picks its battles well.  It’s been fascinating to see the how much coverage and credence has been given to Lynne Friedli and Robert Stearn’s “Positive affect as coercive strategy: conditionality, activation and the role of psychology in UK government workfare programmes” published in this month’s Medical Humanities.  Coupled with the British Psychological Society’s call for the reform of the Work Capability Assessment  this article has gone some way to legitimising the concerns and experiences of many who are involved in attempting to claim social security benefits and who are not having the best of times interacting with a harsh back to work regime.

We have a problem in mental health, as we do in society with the question of who is considered to be legitimate in raising problems.  We tend to devalue those who experience suffering when they raise points that challenge both our own position and the ideological position we hold them to occupy.  In mental health, some flavours of user opinion are afforded more respect than others.  We need clinical psychology wherever to help bring into public discourse the full range of human emotional responses to the profound changes our country is going through, not just the ones that fit a particular ideological position.  We need allies; not saviours.  We may not be comfortable with it, but the words of clinical psychologists still have power.

We need Clinical Psychology to get out of the office and beyond the therapy room because we need someone to help make the case for those who are losing out.  To do that we need a clinical psychology that has political understandings but which also is close enough to people to be able to offer pragmatic support, too.

We need clinical psychology to help make wellbeing happen, by first always, always, always making sure that it spends enough time with people to be clear of where the problems really are.  When it clinical psychology can’t act directly it must help to bring into sight the suffering and the difficulties of those who are in need without shaping those needs through abstracting ideological prisms.  People need help now, not in the next world.

Once you get out of the therapy room you run into the world in all of its confusing, upsetting, uplifting and beguiling glory.

And that’s where we need you.  We need you to be engaged.  We need your resources.  We need ideas and help with ideas.  We need the kind of things we’re going to hear about today.

And we need a clinical psychology where it should be; hanging out with people.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

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Mental health activism: who speaks and who listens?

The following is the extended text of a talk given to a session on activism and empowerment in mental health by Mark Brown at the Rights for Life: supporting Recovery and Ending Discrimination conference in Glasgow on 2nd June 2015.

In mental health in the UK we have for a couple of decades made the mistake of assuming mental health support and the NHS are synonymous; as if the only way to change the lives of people with mental health difficulties is to ‘fix’ NHS mental health services.

I’m not sure that this is the case.  We stand here, having this discussion because of the work of people with mental health difficulties in the past.  The people who forced change.  The people who didn’t accept that crap was good enough.  But we’re a long way from finished in that process.  I think events like this show we have the opportunity to move towards a new relationship between mental health organisations and individuals. But I think there’s some stuff we’ll have to talk about first.

I think that individuals often have a crisis of legitimacy when it comes to raising issues around mental health care and support.  I think the issue of legitimacy looms large over mental health activism as a whole: who has the right to surface problems and who is likely to be listened to when they do so?  If you get a group of people with mental health difficulties together in room together you’ll get a strong picture of what isn’t working too well in the way that services work, and more broadly than that, what isn’t working too well in society at large.  When you get folks together they pretty soon work out together what’s really doing their nuts in.  Different groups of folks will identify different things.  There are channels of legitimacy in mental health as there are in all areas of social action.  There are processes through which ideas or experiences pass so that they become accepted. There’s always things that ‘we’ – people with mental health difficulties – know but which take years to make it into the discourse about mental health.  Why is this?  I’m interested in how people get things to happen.

I find myself being very sceptical about the power for change of engagement exercises; mainly because I know that you often give away some of your power as citizen when you enter through the door marked service-user.  A while ago I coined the phrase ‘to be beneficiaried’ which referred to a experience many of us with mental health difficulties have when we move into the realm of influencing and trying to make change happen.  As I put it back in 2012:

“ 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.

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…”

I think we have to be realistic about what is on the table from ‘involvement opportunities’.

You’ll often see them described as ‘giving people a voice’.  People already have a voice, it’s just that they can’t get into the right position for it to be recognised and heard.

Horizontal not always vertical

I’ve noticed that we are still very often orientated toward the idea that decision makers do not know the effect of the policy decisions that they make.

We think that if we take a petition to the king detailing all of our difficulties, as peasants did when revolting, setting out how things are on the ground, the decision makers will slap their foreheads and look at each other and say ‘Oh no! I didn’t realise that it was this bad.  My god, what have we been playing at. I thought WE were the good guys? OMG!’

I think that often, in our wish to start campaigns that will rock the establishment we’ve actually forgotten that we also need to communicate with our fellows and our peers.  We’ve forgotten that we need to be building our connections, supporting each other and passing on information about how to do things.  We need to focus on the horizontal as much as the vertical.  We need to have ‘boots on the ground’.  We need to make sure that we can get the resources to the right people at the right time to do the right thing.   The chain has sometimes seemed to be: start a campaign on your own about a bad thing; hope a charity takes notice; when the charity takes notice they ask everyone else to chip in their experience of the bad thing; all of the bad things get parcelled together in a report or a twitter campaign and then sent off to ‘those in power’.

I think we’ve fallen into the trap of thinking that the undeniable cathartic power of telling our personal story of what didn’t work for us (or what did) serves the same purpose as exerting political pressure.  It can, if you have the right story in the right place at the right time, but it’s more complicated than that.

Sure, there have been cases that have changed the world.  But they changed the world not because they went straight to the top.  They changed the world because those ‘at the top’ were afraid of the responses of enough people they deemed to be important.  The hard hitting expose is meant to cement in the minds firstly of noisy figures like columnists and then beyond that the general public that there is a terrible thing about which something must be done. It is not about providing government with evidence of how bad things are but providing people who aren’t the government with the idea that the government is failing in some significant way. So that the government worries enough to change things.

We’ve entered a period where anti stigma work has been more successful than ever in raising the profile of mental health difficulty as an issue amongst the general public.  We used to complain that no one cared.  We can’t say that now.  People do care.  But moving from people caring to people as the electorate exerting pressure on policymakers has so far eluded us.   It is entirely possible to say that you absolutely love people with mental health difficulties whilst also implementing policies that make their lives worse. It’s a bit like the defence ‘But I can’t possibly be racist, I love Beyonce. And Stevie Wonder. And Lenny Henry.”

A human rights based approach

In 2013 The World Health Organisation (WHO) published Investing in mental health: Evidence for action, an excellent paper which in their own description examines: “potential reasons for apparent contradiction between cherished human values and observed social actions.” The paper examines the case for governments across the world to invest in mental health by acting upon avoidable risks, providing essential care and enforcing fundamental rights.  It also examines why governments do not make these investments despite convincing evidence to encourage them.  As the report has it; there are a “number of barriers that continue to influence collective values and decision-making – including negative cultural attitudes towards mental illness and a predominant emphasis on the creation or retention of wealth (rather than the promotion of societal well-being).”

The UK, even with our currently falling level of investment, terrifyingly, still has one of the best funded systems of social support for people with mental health difficulties in the world.  The report states: “ there is ample international evidence that mental disorders are disproportionately present among the poor, either as a result of a drift by those with mental health problems towards more socially disadvantaged circumstances (due to impaired levels of psychological or social functioning) or because of greater exposure to adverse life events among the poor.”

As you may have picked up; the WHO has a pretty strong attachment to a human-rights based approach to mental health.  Without mental health , it is impossible for people to claim other fundamental human rights.   The WHO feel there are a number of key actions, not limited to treatment, requiring state intervention to promote mental health:

  • provide better information, awareness and  education about mental health and illness;

  • provide better (and more) health and social care services for currently underserved populations with unmet needs;

  • provide better social and financial protection for persons with mental disorders, particularly those in socially disadvantaged groups;

  • provide better legislative protection and social support for persons, families and communities adversely affected by mental disorders.

Democratic governments maintain their position by remaining popular. UK government maintains its ability to make things happen by gaining the support of the electorate and by gaining agreement of elected representatives to make, amend or remove laws; set taxes; and decide budgets.  Centrally controlled spending can be centrally controlled.  Devolved spending, such as spending within the current NHS and Local Government budgets can be mandated or incentivised.  It’s noticeable that the party (in England at least) most committed to mental health was the one wiped out at the last general election.

The WHO report suggests that one of the reasons why governments do not invest in mental health is because there is always something more important to spend money on.

People do not usually die from mental health difficulties in large, definite numbers in a way that pricks the public conscience.  If someone loses their job as a result of a mental health difficulty and becomes homeless that is seen as a housing problem, not a mental health one.

The WHO suggest that while governments may be fully aware of the individual and community costs of unmet mental health need, they are also aware that to pay for meeting that need would mean removing funds from another potentially more valued activity.  So, the decision is made to underfund mental health on the basis that other areas of spending are considered to be more important either to government or to voters.

In other words: mental health? Tough. Why should mental health come top of the list when there are a number of other competing claims on public funds?

The WHO also suggest that negative perceptions of mental illness (stigma) influences decisions as well as “Low expressed demand/advocacy for better services”.  There is, in other words, a lack of political will and political pressure to spend on mental health other than in the ways already decided upon.

Outside scrutiny and outside pressure

This is why outside scrutiny and outside pressure is terribly important.  In August 2013, Mind in England got the ball rolling on a campaign about crisis care that also took in the issue of facedown restraint.  “Data secured by Mind under the Freedom of Information Act reveals that at least 3,439 patients in England were restrained in a face down position in 2011-12, despite the increased risk of death from this kind of restraint.”  They only got that data by carrying out Freedom of Information requests.  Not all trusts recorded face down restraint.  They found that two trusts – Northumberland, Tyne and Wear NHS Foundation Trust and Southern Health NHS Foundation Trust – were responsible for half of the incidents of face down restraint they were told about.  There was a possibility that either these trusts were just more scrupulous in recording such incidents.  Without outside pressure, there is little incentive to reveal information that might prove difficult to explain.  In mental health there are few ‘never events’; events within NHS services that automatically trigger an investigation.  In some senses, mental health still languishes in a shady space beyond strong outside scrutiny where individuals may bring complaints about individual services, but are very often shunted off into intimidating and bewildering complaint channels and where there is often little chance of catching a systemic failure.

One of the problems is that there is a very weak press in mental health, and that press has been traditional led by the agenda of mental health charities and mental health professional bodies like the Royal Colleges.  But things are changing.

New voices, new challenges

Once, before we all started blogging, tweeting, facebooking and organising the main voices about mental health were the voices of either medical professionals, well meaning (or otherwise) politicians and major charities.  They were mostly voices that claimed to speak on our behalf.  Now the internet and access to the platforms it creates for sharing, discussing, organising and making things happen has challenged that in fundamental ways.

Where once we might have been happy to contribute to a service user involvement opportunity or to take part in a consultation, more and more of us are making a space where our voices, opinions and, as importantly, our actions can be seen and heard.  We’re looking to do ‘something’.

Where once there were a few voices lucky enough to make it on telly or into the paper, now there are thousands in the public sphere across social media, all reporting from the frontline of life with a mental health difficulty.

That’s obviously a wonderful thing and a step forward.  It does, however, present us with some challenges, too.  I think we’re on the cusp of the most amazing period in mental health activism history, where big organisations can provide the support for small organisations and individuals to take forward new questions and new ideas.

If, that is, we can resist tearing each other apart.

Being comfortable in disagreement

As individual voices speaking from our own experiences become more numerous, so too do the range of experiences and ideas that are available for debate and comment.  We’ve been so used to other people speaking for us that we sometimes forget that someone writing a blog, adding a comment or chatting on twitter or writing for a magazine isn’t a person speaking from a position of authority but actually just another person with mental health difficulties sharing their views or experience.  So we go in all guns blazing and start attacking people who are more similar to us than they are different.

Maybe the mental health movement isn’t really one movement at all?  Some people desperately want services to be more involved in their lives while other people are desperate to escape from them all together.

People who experience schizophrenia have different experiences to people with depression. Older people have different experiences from younger people. What happens in Devon isn’t neccessarily what happens in Dorset, or Glasgow, or New Orleans. Beyond those differences who you are influences how mental health difficulty impacts on your world.  Your economic circumstances, your religious or family background, your political beliefs; all these things will shape how you experience mental health difficulty and how you feel about it.

As campaigners, bloggers and activists we have to make sure that we are enabling a wider debate to take place while also making sure that we can find ways of moving forward.  We have to respect different opinions and experiences and find common ground whilst also remembering that no one can ever produce something that will make happen everything that every individual thinks should happen.  We have to use our own experiences as the fire that drives us, not the standard by which we measure others authenticity or trustworthiness.

A political movement is one where lots of different experiences choose to focus on trying to get particular things to happen.  They don’t all have to have had exactly the same experiences or even have all the same ideas.  They move forward on what they all agree upon.

Even if we don’t agree with them, it’s always better to extend charity and respect, otherwise we’ll use up all of our piss and vinegar fighting with each other and we’ll have nothing left over with which to change the world.

If we’ve spent ages battling big organisations and huge discriminatory ideas, fighting for justice where none has been forthcoming, we can, often by accident, turn the same tools and weapons against someone who really has no more power or influence than us.

A different experience or opinion is taken as an attempt to delete or negate your opinion – ‘If you are different from me, you are trying to erase me’.  We end up turning our peers into our enemies by assuming their different interests are an attempt to destroy us, rather than just a different focus.  We make people that are more like us than not into ‘the enemy’.

When it comes to an area as diverse as mental health what we need is more acceptance of different views and opinions, not less.  We can listen to each other without necessarily agreeing.  We can talk about different points of view without betraying our own.  We can promote people taking different approaches even if they aren’t the approaches we could take.

We can create a climate where big ideas are debated and minority voices are heard rather than just being ‘included’ by tokenism.  I’d rather have ten black mental health bloggers than ten people who aren’t black adding “and black people have different experiences of services” at the end of every post they make about their own experiences of mental health services.

None of us can do everything or focus on everything all at once.  We have to look at how we can make resources, knowledge and support flow to people who are under-represented so that they can represent themselves, can make things happen for themselves or better guide what other do on our behalf rather than graciously extending a hand and ‘giving them a voice’ in structures that don’t work for them.

After all, how are we expecting to make the argument that society should be more accepting of us and our difference if we can’t even manage to accept each other?  Promote discussion, value difference, work to find common ground or accept that your struggle and my struggle might not actually be the same struggle at all,  have respect, kindness and charity.

We should be doing everything that we can to create spaces for people to speak for themselves.   It’s not just about speaking truth to power.  It’s about learning how to talk and how to listen to each other, too.

And I think that’s what is already happening.

Well, at least I hope so.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

Portions of this speech originally appeared as part of a blog ‘Who speaks for whom in mental health?’ that appeared at Dawn Willis’ blog.

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At the mercy of prevailing winds: people with mental health difficulties and austerity policies

Mental health isn’t just something that is about treatment.  For those of us that experience difficulties with our mental health, they’re something that tend to seep into all areas of our lives.  In common with other disabilities, mental health difficulties tend to make many areas of life more difficult.  They ways in which those areas are difficult depend on the world that we live in and the people around us.

Strong social protections; benefits that offset the greatest hardships that come from having difficulties with your mental health; strong rights to treatment, support and to quality of life: all of these things safeguard the wellbeing of people with mental health difficulties.  While mental health difficulty might happen in our heads; the solutions and causes are not purely in the individual.

We know that having a mental health difficult means that you are more likely to end up poor.  What it means to be poor changes depending on the prevailing political and social winds.  Mental health difficulties can often make you feel vulnerable because when you are having difficulties you are more at the mercy of those prevailing winds.  Having a mental health difficulty makes things more difficult.

The fact that with the right support, help and changes in circumstance some of us will be able to gain and stay in paid employment is used to suggest that others of us are malingers or just aren’t trying hard enough.

Loss of trust

Many people with mental health difficulties have lost the sense that it is possible to trust this, or any, government to put their rights on the agenda.  People have seen the accessibility of treatment they need reduced; seen the benefits they have been receiving both in-work and out of work dwindle; seen the fabric of local voluntary and statutory services and organisations fray and in some places collapse.  Mental health began austerity in a condition of under-investment.

When someone first falls ill our automatic response is to think ‘there should be someone to help with this’ but increasingly, as cuts hollow out social protections – regardless of whether they are provided by the private, public or voluntary sector – people are finding that the help that every thought should be there just isn’t.

What I’ve seen, and experienced myself, is that everyday life with a mental health difficulty is often a struggle. One that isn’t obvious; isn’t headline grabbing; but one that makes a mess of lives if there isn’t support, help and protections.  And those messes, and people’s lives, get worse.

When we’ve lived with mental health difficulties for a while; our hope is that the crises will be further apart; that help and support will make sure that we don’t lose sight of what we want our lives to be about.  When we’ve got the right treatment; the right support, enough money to live on and a balance between stretching ourselves and feeling safe – even then we’re often just managing to keep our heads above water.  The margin between doing OK and not doing OK can be very slim.  Even a tiny policy change can tip life from being manageable into life being impossible.

Even when everything is in place we can still become ill.  Mental health difficulties tend to be treacherous like that.  When that happens we need to feel that it’s possible to access help quickly before everything that we’ve managed to build up is washed away.

Your policy is my life

People with long term mental health difficulties are some of the most vulnerable in society. And we hate it.  We hate feeling that so much of our life depends on policy made in Whitehall or discussed in No. 10.  We can’t pull off a magic trick and become not-unwell.

Even when we’re doing well it’s often because we’re getting the right help.  That isn’t an argument for the removal of that help; it’s an argument for its continuation.  The Liberal Democrats in coalition  tried to lay a legacy of mental health change during the last Parliament.  Some treated that with cynicism, but I’ve not reason to think it wasn’t heartfelt.  Whether that sticks or not is based on whether our new government cares enough about mental health to do the one thing that government can do apart from trying to pass laws.  It depends on whether they are prepared to spend money.  It’s easy to look like savings are being made if you find ways of shifting costs off the balance sheet.  It’s always possible to shift the costs of not investing in mental health off the balance sheet; to say that it’s individuals fault for not getting better, not making the best of what is on offer.

But remember: mental health treatment and support needs to a be a partnership.  You can’t ‘do’ mental health to people.  It’s not a ‘pull your socks up’ situation.  This government needs to rebuild that lost trust if it is to get anywhere with people with mental health difficulties.  As much as we may want to be self-reliant, we also have to rely on the society in which we live.

Many people feel this acutely. People are scared and worried that what little security they’ve managed to achieve in the face of mental health conditions that make a mess of the things you might want to do can be swept away by a single policy announcement, an edit to a cell in a spreadsheet, a policy focus on one aim rather than another.

If the scale of cuts suggested is to put into action; the human cost of those cuts aren’t collateral damage.  The human costs of those cuts are the core business of any government: the duty to protect its citizens or subjects.  And for many who feel close to those cuts, the prevailing wind is bringing not a warm breeze of spring but a harsh chill of a never-ending winter.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

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People driven digital health: solving problems people actually have

The below is the text of a talk by Mark Brown given at the mhealth Habitat event ‘People-driven health and wellbeing’ on Thursday 14th May 2015 at Open Data Institute, Leeds. 

I’ve been asked to be a little provocative about the idea of people driven digital health.  So I’m going to start with a definition. People driven digital health begins with the needs of the user and then finds the data.  It starts with people and complexity and richness; it starts with the problems people have and then it finds out what it needs to know to make a solution happen.  People driven digital health is about using digital means to solve problems people actually have.  It’s not about amazing singular genius, it’s about problem solving process.

People driven digital health recognises we now have the power to stop trying to bend people to fit into solutions and can actually create solutions that fit in with people.  People driven digital health starts with what actually happens to people and how it feels and goes on from there.

Health happens where technology, culture, practice, knowledge and resources meet people’s real lives.

We’ve made the mistake of assuming that the places where these things touched people’s lives in the past are the only places where it is possible for them to touch people’s lives in the present.

In the past it was difficult to start with the user because it was difficult to find them; difficult to bring them together, difficult to ask them what they thought.

The ways in which we have done health in the past have been limited by our technologies.  The only ways in which we could collect data from people was if they were right in front of us, so we would observe.  Or if we could get their address so we could write to them.  Or their phone number so that we could speak to them.  We could only help people if they were in front of us.  But digital is changing things.  Do you remember when the only books you could read were the ones that were available in the bookshop or library in your town? Or when you had to order records from the record shop before you could hear what they sounded like? Digital has changed more things than we realise.

So we could only think of heath as being what we could make available with the technologies we had.  But technology has been changing.  We carry more processing power in our pockets than existed in the entire world in 1940. Technology has gone through a process of consumer democratisation.  Many of us carry with us a tiny computer at all times that is capable of carrying out tasks that would only have been possible using specialised equipment just a generation ago.  Some of us even use these tiny, amazing digital devices to make phone calls.  All of the time, people are using digital technology and digital devices to do amazing and wonderful things while in health we often have existing structures that are dismissive and even hostile to the encroachment of these little computer wonders.  You can pilot an airplane from your iphone, but in my area, mental health, we’re still bickering about electronic patient records.  In a world of techno magic we’re still talking about bureaucracy. People driven digital health might begin to break that deadlock, if we let it.

In health we’ve sometimes been guilty of ignoring external consumer pressure; certain that the ways in which we deliver health outcomes are detached from the ways in which people live their lives.  In a world where we would find it ridiculous that someone else chose our car or our phone or shoes for us we will happily ‘choose’ on behalf of thousands what insulin pump they use or what telecare will monitor them.  We ignore user preference and design when we think of digital as being a medical device.  If we think preference is mere frippery; why do trainee medics spend so much time umming and ahhing when buying their first stethoscope?

In the words of a tweet from Alan Cooper (@mralancooper on twitter), one of the pioneers of the use of persona in design, in a tweet published on 13th November 2014:

“When your users are ill-defined the imperatives of the stakeholders dominate, and that is how shitty software is created.”

In health we can easily define exactly what all of the stakeholders are trying to achieve in the development of a solution (reduction in multi-morbidity! Increase in positive outcomes! Shorter waiting times! Bigger majority in parliament! More column inches!) We find it more difficult to put a face and history and favourite colour and religious belief and sexuality and preference for which device to the people who will actually use the bloody thing we’re making happen.

The end of the era of big breakthroughs

There are many things that we know to be true about what people should and shouldn’t do about their health.  We’ve been amazingly good at working out the best treatments for people’s ailments.  We’ve just been terribly bad as patients at following the rules of what we need to do to make these treatments work.  Lives are complex because people are complex.  When we leave out all of the things that make people people, we’re missing a huge element of what makes things succeed or fail.  Historically the people who came up with medical solutions were not the same people who were the direct beneficiaries.  We’ve been great at knowing what works in the trial but awful at knowing works in the context of real life.

Sometimes this is about people who experience particular health conditions hacking together their own solutions to their own problems, as some who’ll be speaking today have, and finding that they’ve hit upon a problem that others were facing, too.  Other times it’s about engaging in a process of discovery by spending time with people and helping them to crystalise their problems and then honing those problems to such a finely defined state that they can be used by engineers to develop solutions which can then be tested.

I think we may be past the era of big breakthroughs.  Big medical thinking has been awesome at getting us to this stage.  But I increasingly see that complexity and small breakthroughs is where our gains will be made.

You can’t design from abstracts

We still have dream that it’s possible for some clever men from the ministry, with their slide rules and tweed jackets and pipes, to digest all of the statistical data and find some kind of golden solution to social problems.  It was a dream when we actually thought about managing resources that way and it’s even more of a dream now there’s no chance us ever resourcing it.  We think about solving the health problems people have as being some kind of statistical exercise.  If we know X and Y to be true from data, then we think that it’ll be possible to develop solution Z and then it’ll work for everyone.

If we aren’t careful in health and care we make ‘patient need’ a statistical abstraction.

You can’t design anything from statistics.  Design is about engineering solutions to problems that people have.But it’s more than that.  We might know that statistically most chairs have four legs but this does not mean that all chairs with four legs are equally comfortable to sit upon. Statistics will tell you that I am a 37 year old person with a diagnosis of bipolar II disorder but they won’t tell you that I have a deep hatred for Linkedin or that I’m a vegetarian that doesn’t like eggs or cheese.  These might not seem like big details, but they would be if you were trying to develop a digital health service within Linkedin. That tailored diet advice to people in their thirties with a bipolar spectrum diagnosis.

Based on eggs. And cheese.

Access to digital technology is growing year on year.  As processing power and functions continue to grow in power and diversity, so does the rate at which people integrate potentially paradigm busting devices into their lives.

We could, if we wanted, tomorrow instigate the biggest ever study into the effects of psychiatric medications if we wanted.  People are already using wearables to track their heart rate, their activity, their sleep. People are already tracking moods and calories.  We could just say ‘hey!  people! contribute all of that data to us along with what medication you’re taking.  Then we’ll try and see what it tells us’.  We could find ways of personalising dosage of that medication from that data.  It would tell us lots of things that we hadn’t thought to ask about.   People could generate the data for themselves and then hand it over willingly, in all of its complexity for others to make sense of, like happens in the citizen science movement where people put up home-made weather stations in their gardens to collect local level climate data.   But we can’t be arsed.  Or more correctly, the data of people’s lives doesn’t fit the categories which we want to collect data in.

People driven digital health gives us a chance to start small, to find little things that might help people by spending our time with people, by digging either into our own lives or into the lives of others.  It gives us a chance to build things that might initially change the lives and health of a few people, then a few more.  And then more.  Each iteration refining the bit that works further until we start to see new mechanisms emerging in different areas of health.  In people driven digital health you have to do it to prove it.  In other forms of health you often have to prove it before you can do it.  But even then, the needs of people should drive the implementation of what research has ‘proven’.  We’ve got a lot of gold standard treatments that take away their glitter by being delivered in bargain basement ways.

Health doesn’t listen if you don’t say ‘health’

For some of us, finding the problems to design from will be about examining our own lives then finding others who share similar.  For others of us it will be about starting processes of discovery, of using ways of working with people to surface problems.  For others of us it will be about unlocking resources so that others can begin these processes.  Leeds has already begun this, and I’ve been playing a tiny part in it, which is awesome.  It’s happening in other places, too. There are ways of making this happen, which are new to health but not new to other areas of building digital things.  Health just stops listening when someone doesn’t say ‘health’ at the start of the paragraph.  It’s there to be witnessed, adapted and tried out.  And, in my experience, user experience driven design makes for far more exciting ways of working with people and involving people than ‘engagement’ or ‘involvement’. It makes better things, too.

Engineers like solving problems.  Health professionals know about health.  People know about their lives and how they feel about them.  If you add those three together you begin to get possible solutions that people can try, break, hate, love, ditch, run with or take to their hearts.  It makes things people can test.

In a country where we’re lucky to live longer, but where we are more likely to spend more of our lives living with multiple health conditions and disabilities, digital presents us with a chance to solve some problems, mitigate others, or alter the condition of life around more.

This is a way of working many of us are unfamiliar with, one that adds complexity rather than removing it.  When we take this path our big solutions begin to look less clean, less pure: complexity seeps into them.

But that’s only because people are complex.  Accepting that and working with it will mean that we start to find little, shiny, polished solutions to little problems that really exist in people’s lives.  And within those little solutions we might find the next big ones.

That some of us are here talking about it today shows that this is possible.

We just have to make it happen more.

Now, don’t go back to the office tomorrow, go and hang out with some people and see what problems they really have.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

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No time for breathing space: the voluntary and community sector in #mentalhealth

 The below is the text of a speech given by Mark Brown to The Mental Health Providers Forum Conference Lunch 2015 at the Kia Oval, London on 22nd April 2015

I’ve been given the job this afternoon of presenting some thoughts and ideas about the role and condition of the voluntary and community mental health sector in advance of our awards this afternoon.

This has been an insecure seven years for many of us in the voluntary and community mental health sector.  For the first mutterings of an oncoming storm as the financial crisis began in earnest, the bite of austerity, the reorganisation of the landscape that many of us had accepted to be ‘just the way things are’, the cuts and the fear of the cuts, and the growing sense of worry and panic amongst people with mental health difficulties who felt themselves to be at the mercy of all of these reorganisations and realignments of public spending.

It has seemed sometimes that the best we could do was to keep our heads down and keep buggering on.  Hopefully in the next few minutes I’m going to be able to explain why we need to look up more, and also hazard a guess as to why that’s so hard.  Keeping slogging on against the odds is an admirable course of action, but not always the best one when change is snapping at our heels.

Back in 2011 myself and my colleague David Floyd wrote a thinkpiece called ‘Better mental health in a bigger society?’ (the question mark was extremely important) which was published by the Mental Health Providers Forum.  In it we surveyed the current wider governmental policy moment, looking at ideas like communities themselves finding ways of solving problems and the possibilities for new ways of handing power to people with mental health difficulties to define what should happen.  We made the distinction between voluntary activity, people joining in with things without expectation of payment, and voluntarism, people banding together to form structures in their mutual interest.  In it we said:

“many organisations that have previously been funded through block grants from local authorities are now having funding cut, often with the expectation that they will be ready, willing and able to sell their previously grant funded services to service users with personal budgets. Many organisations, services and groups outside of the NHS run a significant risk of being unable to survive long enough to form the new kinds of relationships with service users and the NHS and local authorities that is needed to take forward a new patient-centred approach to delivering mental health.”

We were exceeding aware, even then, that the structures in which the voluntary and community sector in mental health had survived and even flourished in the previous decade were beginning to disappear.  It was our assertion that just at the point where organisations would need investment to innovate and to potentially realign their services more closely with the needs and wishes of people with mental health difficulties; the sustaining umbilical of block grants for services would be severed.  We were hopeful that new services and organisation might come through this process delivering different things to the ones that had previous existed and that some old and loved organisations might be able to surf this tide of change and stay afloat.  That many of you are still here and doing good stuff suggests that at least some of that hope was justified.  But, I suppose, we were also issuing a warning: it’s exceedingly hard to innovate yourself out of a crisis once you’re in.

Need for change

A change you choose is much less painful than a change forced upon you.  I’m a person with mental health difficulties: one who has used community and voluntary services in the past and probably will at some point in the future.  We were aware that what was on offer hadn’t always managed to keep pace with the needs and wishes of people with mental health difficulties and wasn’t recognising that the profile of people with mental health difficulties was changing.

It was once possible, rightly or wrongly, to look at people with mental health difficulties as a homogenous group.  This was, in the main, because people with particular diagnoses were likely to have gone through similar institutional experiences.  This is no longer true.  Neither is it true that people with mental health difficulties are happy to get anything. People with mental health difficulties have preferences, desires, dreams, hopes and aspirations which differ from generation to generation, from circumstance to circumstance.  People with mental health difficulties are not a fixed quality.

Increasingly via social media especially, we are seeing the beginning of what we can call ‘mental health public opinion’.  People are finding that their ideas and analysis can and does shift offline events.  This collective voice is quick to snowball; quick to move to fire and anger.  It is volatile; mercurial; and increasingly hungry for change while being despairing that change will come.  It wants things to do and it wants things to happen.

Where once it was only people who had a shared experience of psychiatric services who might find each other, or people who were anchored around a local charity, group or organisation, now people with mental health difficulties are finding each other online and forming their ideas, thoughts, hopes and fears as part of a much wider tapestry of people

This developing, growing, changing group of people are creating a space where mental health change can happen and see themselves as actors not subjects.  They want to make things happen using the tools that they have but it’s worth remembering they are not online as campaigners or lobbyists as much as they are online as people.

They should be our natural supporters, but sometimes we’ve managed to alienate them by forgetting they exist; treating them only as beneficiaries not as partners or bypassing them entirely to reach donors or policy makers.

Falling out of life

Every year more people fall out of their lives and find themselves in a condition of not knowing anymore.  Developing a mental health difficulty and then receiving a diagnosis involves taking a status hit.  People find themselves somewhere in their life that they did not expect to be.

We know that people with mental health difficulties often end up earning less money over our lifetimes; but we also know that developing a mental health difficulty often leads to changes in the fabric and quality of life, too.  Plans evaporate,  status chipped away.  People land on their backsides after the bottom drops out of everything, blinking and baffled as if they had fallen through a trapdoor into a hitherto hidden underground kingdom where all of the rules are different and all of the things they’ve learned and achieved are trapped in the sunlight above.

It’s here that voluntary and community mental health world should be ready to spring into action.

The NHS loves its care pathways, because that’s what it’s set up for.  People, on the other hand, tend to have a stronger preference for getting help, support, being around people and being able to influence both their care and their position in the world.

This period of dazed not knowing, of disorientation, is something that NHS mental health services have not been good at dealing with.  Much of the tension between people with mental health difficulties and people who provide mental health services has been, outside of concerns about coercion and treatment, concerns about the lack of support given with the job of putting back together a meaningful life and maintaining that meaningful life in the face of practical obstacles.  The NHS has been good at fixing the ‘body’ of mental health difficulty but has, understandably, found it much more difficult to nurture the ‘person’ of mental health difficulty.

Do we know what to do next?

I would like to say with confidence that the voluntary and community sector is closer to people with mental health difficulties and that it has an ear closer to the ground, but I think that varies from place to place and organisation to organisation.  What I can say that I think we really should be looking at working out what problems people actually want us to solve by talking to as many people with mental health difficulties as possible. We need to know with clarity what it is people actually want, what they think is missing and what their preferences are in terms of receiving help, support and guidance.  I always find myself at a loss as to where to direct people for market intelligence when I meet someone from outside of our sector who’d like to do something in mental health.  They ask ‘so what do people want?’ and I have to say that very often we aren’t, as a sector very clear about that apart from knowing that people need ‘something’ or someone contracted us to provide something.

I’ve noticed that we still, unlike other industries, tend to do research to tell other people what they should do rather than carry out research to help us to decide what we should do.  We still tend to think of research and campaigning as a kind of ‘petition to the king’; taking things up to the doors of policy makers in the idea that somehow the ideal of central planning still exists and that some men (and it was always ken in this fantasy) with slide rules and horn-rimmed glasses sat with charts smoking pipes will go ‘ah yes, that makes sense for the central allotment of resources; we shall change things’.  I’m not sure that the flows of money or power to make things happen exist in that way anymore.  We’ve lived through a Parliament where it has become ever more unclear just who is responsible for what and when in relation to mental health.  Of course, there are some things that can only be changed by act of Parliament or by Treasury decision, implementation of human rights safeguards and changes to social security policy for example, and as a sector we have, eventually, begun to campaign and present evidence on these subjects.  What we’ve been less good at is communicating horizontally rather than vertically, spreading useful stuff between our peers, both professional and non-professional, so that we can make things happen for ourselves.  We’ve also been less good, to my mind at least, at doing the kinds of research and development that helps us to find out what we should be doing and how we should be doing it.  As a sector we’ve been good at making the case for something to happen, but less good at actually taking on the legwork of working out for ourselves how it might happen.

I also think we’ve been terrible at sharing as a whole what we’re doing and what it means.  I keep wondering ‘where would I direct someone new to our sector to help them get up to speed on all of the latest events,  issues,  controversies and thinking?’

In our desperation to survive from quarter to quarter we’ve sometimes failed as a sector to see that we are missing opportunities and losing our way on the path towards making people’s lives better.  We’ve become so accustomed to seeing our sector as starved;  we’ve found it difficult to do other than dream of stability.  Once we are safe, we’ve thought, then we’ll be able to begin the process of making change.

 Scarcity

Professor of Psychology at Princeton University Eldar Shaffir defines this as scarcity thinking.  Speaking on Radio 4’s Analysis programme last year, Shaffir defined a scarcity mindset as

“you enter a psychological state that comes with the feeling you don’t have enough of something that’s important to you. And in that psychological state, one of the main things that happens is you spend a lot of your attention, you devote a lot of your attention, a lot of your cognitive capacity to managing, to juggling, to worrying about the thing you don’t have enough of, and that just leaves less mind for other things you have to worry about.”

 He discussed an experiment that showed the effect of this scarcity mindset on our ability to think and to respond to the world around us.  He and his colleagues went to a mall in New Jersey and set people financial scenarios to solve that were very close to real life, like a car breaking down and needing to be fixed.  Then they got them to play video games and measured their performance while they were thinking about the financial scenario.  As Shaffir explains it, the results were pretty definitive:

“when people sit and play these games, some of the scenarios come in a form that’s very manageable – the car is going to cost $150 to fix, which we know most people in the mall can easily do; and other scenarios come, which are very challenging – the car is going to cost $1,500 to fix, which we know for roughly half the people in the mall is a major challenge to come by quickly… Independently we get their household income and what you find is that the rich respondants in the mall are not influenced by the scenario. The poor people in the mall look just like the rich when they’re worrying about the scenario that’s manageable – when it’s a $150 car, they do just as well – but when they’re worried about the scenario that’s challenging, that’s occupying their mind, they now perform significantly less well. The effect size corresponds to roughly managing 13 IQ points lower than they did when they were less worried.”

So, what Shaffir and colleagues found was that even when set a fictional financial problem; when people experienced real scarcity of resources the difficulty of solving even a fictional financial problem ate away at their ability to do other tasks at the same time. The condition of scarcity made them less good at playing computer games, which means they were less good at thinking quickly.

I think for a long time that this scarcity thinking has afflicted not just individuals working in mental health but our sector as a whole.  The constant day-to-day firefighting and the real or perceived lack of resources has narrowed our focus down into a constant series of reactive and worry-stricken preservation maneuvers attempting desperately to find the chance to catch our breath.  We’ve managed to keep going while losing sight sometimes of why we’re keeping going.

How to get a future no one wants

I was lucky enough last Summer to spend a couple of days in Dublin discussing the future of mental health with colleagues from the US, Canada, Sweden, Ireland, Australia, New Zealand and the UK.  It was only the second time I’d ever been on an airplane, so I was well excited.  It was an incredible opportunity to hear people from different countries, and different health and social care systems, discussing where they’d got to in making better mental health happen and where they, and we, might go next.  What was fascinating was that despite the room being filled with centuries worth of professional and lived experience, it was incredibly difficult to escape the pull of the now and actually look at the next twenty five to thirty years in mental health.

Regardless of what sector or which country people most identified with, as discussion went on we found our horizons shortening, the scope of our gaze going from decades, to years, to next week when we got back to wherever it was we usually did our mental health work.  It was like we started with a map of an potentially threatening, potentially delightful unknown land but then ended up discussing where to put our kitchen units when we redecorated our flat.

The habit of scarcity kept dragging us back.  We couldn’t come up with new ideas because we were too stuck on wondering how to make old ones work.  We couldn’t see the future as anything else but a never-ending now but a bit worse or better.

We were lucky enough to have Jessica Bland of Nesta helping us out.  She showed us that there are three possible futures whenever you’re thinking about what to do.  There’s the probable future, which is the one without anything changing that is most likely to happen.  Then there are possible futures; futures that might happen if something changes between now and then.  Then there are preferred futures, these are the ones we’d love to happen.  The spaceship and jetpack ones.  The art of thinking about the future is working out what you would need to do now to maximise the chance of one of your possible futures being as close as you can make it to your preferred one.  In other words, the only way to get a better outcome than we’d hoped is to know now what vision it is we’re trying to get to.  Somehow we need to escape our scarcity thinking and begin to plan and build rather than living day-to-day.  Thinking ‘we need to make things better’ isn’t enough.

These should be our golden hours.  Or at least they could be if we can capitalise upon what I’m calling for want of a better term ‘The Time to Change’ moment.  Mental health in its most diffuse sense has never been more visible in public discourse.

This ‘Time to Change’ moment has swelled the gallery with people who are committed to mental health as an issue without necessarily being committed to following the policy detail of what makes for a good societal response to mental health.  We’ve said for years people aren’t listening.  People are listening now, maybe not the people we’re used to targeting, but there’s people ready to hear what needs to be done.   There is an opportunity through the current zest for innovation and new ideas to overcome wicked social problems to open up new pots of money outside of the traditional sources of funds for the community and voluntary sector.   The door is open and it’s up to us to walk awesome stuff through it.  I think what I’m saying is that the money that is around now might never pay for what we had before; but different money from different sources might pay for what we really want next.

To do that will require working out what problems people actually have and how best to solve them.  We can do this. If we can catch our breath and look up.

There isn’t any money sitting waiting for us.  There’s ever growing needs to be met.  It’s going to continue to be a tough time.  If we do need to advocate for more money we need to advocate for money to provide ongoing care and support for people who need it and more money to make stuff happen.  If we aren’t careful our sector will be bypassed in a rush to re-medicalise mental health and turn the landscape into a series of targeted interventions for ‘problem’ people who’ll be having them whether they want them or not. We need to know where we’re trying to get to, otherwise we’ll end up with a future that none of us want.

Our sector works best when it is a visible beacon of hope in an otherwise confusing landscape.  A point of light, visible to the community around it, that can welcome, answer questions, provide support and be there for people.  We can best be that light when we know in our heart of hearts we are working with people, not at them and when we are finding the right machineries to carry their hopes and dreams forwards.

I’m looking forward to hearing some of these machineries in action.

We need to build our vision for the future and find ways to work on making it happen.  If we can sell the idea that we’re working together to make life better with mental health difficulty, then I think there’s wins out there to be had.  It just might take some different work to what we’re used to get them in the bag.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

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Observations from a rooftop in 2012: mental health, technology, innovation and why we’re tit awful at it sometimes

By way of an introduction from Mark Brown: The below is a blog post written March 2012 after attending a mental health and technology ‘unconference’ organised by the Young Foundation which details the results of what, for me, was probably the one of the most formative days of thinking I’ve ever done.  In it you’ll see the beginnings of many of the thoughts I’ve developed further about mental health, technology, the business of innovation and how and why change does and doesn’t happen.  I haven’t edited it since it originally appeared on the One in Four blog but thought it made sense to pull it together with the rest of the articles at The New Mental Health.

 

I spent Friday at #mindtech (http://unconferencementalhealth.wordpress.com/) [Note: this link will be dead but may be archived somewhere] 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. [Note: despite trying crowdfunding we failed to raise the money to write and research this primer in mental health innovation. I hope that I've managed to capture and explore some of those issues over the following years of just getting on and doing stuff]

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.

(This post originally appeared under the title ‘#mindtech – Observations from a Rooftop’ at the One in Four blog

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter


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People, design, tech, mental health and avoiding shovelling money in a hole #EHWK15

Text of talk given by Mark Brown in the session ‘Co-design for Mental Health – Patients, Clinicians and Minecraft: How We Need to Work Together in the Digital World’ at UK Health Week 2015 on 4th March 2015 at London’s Olympia

In some respects I think I might be preaching to the converted here, but bear with me for 15 minutes.  The title is “How we need to work together in a Digital World”; so I’m going to share with you the process by which the HTML5 web app Doc Ready came into existence and share some observations along the way.

Hands up:  I’m not a tech person, or a design person. I’m a mental health person.  I experience mental health difficulties myself and I spend the majority of my working life in mental health.

I was lucky enough to be involved with the development of Doc Ready, a very simple web based app that does one thing and one thing only: it helps young people (or anyone else) prepare for their first visit to the GP to talk about their mental health.  It was delivered by a team comprising of Enabled by Design, FutureGov, Neon Tribe and my own company Social Spider.  For securing the contract to begin development to launching a public beta of the app took five months.  Which was pretty nippy, I reckon.

Often in mental health we make services that people don’t like. It’s really easy.   All you need to do is not spend time listening to people,  follow only what desk research tells you is best, don’t show users what the service will be like and then only let them try it once it’s finished.  Unfortunately with Doc Ready, we didn’t do this.

Working with people makes sure you avoid putting loads of effort into solving a problem that doesn’t really exist with a solution that doesn’t really match the issue it addresses.  I keep looking at mental health services in general and thinking: ‘I can’t imagine what user expressed problem is is being answered by the way this service is designed.’

All projects have constraints.  These may be financial, technological, political, knowledge-based.  Blue sky thinking, that is thinking without taking account of constraints,  is brilliant when you’re trying to come up with ideas.  It’s bloody awful when you’re trying to solve problems.  The way that Doc Ready was developed involved the people making it directly interacting at all stages with people feeding in their views, ideas, preferences and insights.  In doing so they could respond directly to ideas being fed in.  This constant feedback forced us to think differently about aspects of the projects and our responses to that feedback invited those providing it to bring their own invention and ideas to the problem.

Traditional public sector involvement mechanisms generally begin from the position that the problem has already been identified and that ‘stakeholders’ will feed into its eventual solution.  The professionals set the agenda, shape the interaction then weigh up the contributions.

Doc Ready came into being by a different route via The Paul Hamlyn Foundation/Mental Health Foundation Innovation Labs programme.  Across two Labs ideas for digital mental health projects were created by young people; then a selection were refined through further collaborative work.  These were then put out to tender, with funding coming from Comic Relief and, in the case of Doc Ready, the Paul Hamlyn Foundation itself.  I was there at every stage, from Lab one all the way through to launch and beyond.

Engineers solve problems. Co-production in tech is about delivering great problems to engineers then telling them their solutions don’t work repeatedly until they do.  Rather than assuming people already know the solution to the problems they identify, the process of honing the problem to be solved down should move from people knowing stuff about their own lives, to thinking about what that means, to thinking about how that might be changed.

This process can be seen in the way that Doc Ready only became Doc Ready in the second Innovation Lab.  It began the day as an evolved Lab 1 idea about building a Star Trek type translator for GPs that would turn teen speak into doctor speak.  The problem that had been identified was a real one – young people feeling that GPs didn’t understand them – but the solution wasn’t quite right.

In my experience when put on the spot and asked to come up with a solution to a wicked problem; people usually come up with an idea that isn’t actually THE answer but one that actually helps to clarify the problem further.  By the end of the second Lab, our small group of participants had turned it around to being something that young people could use to prepare what they said and the basis of what later became Doc Ready was established.

One of the basic rules of innovation is ‘listen to people, but listen to the right people’. We co-produced Doc Ready by making sure that everyone involved in the process was doing the bit that was best for them to do.  You can’t bolt on co-production to an existing project model, it’s about making sure that the right people are in the right place at the right time to move a project forwards.

Throughout Doc Ready’s development we spent time with people, checking all the way along the production process to see that what we were developing was in line with what people actually thought might work.

This isn’t what usually happens in mental health.

Traditionally involving people with mental health difficulties in projects has been done in two distinct ways, neither of which is particularly innovation friendly.

The first way is consultation. Usually this involves asking people what they think of a particular thing prior to it being developed or put into action. It can also be asking them what they thought of that thing once it has been put into action (or ‘brought to market’ for all of you product development types).  This can usually be reduced to the question:

‘How much did you like our goods and/or service? a) Loads, b) lots, c) quite a lot, d) loads and loads and loads or e) I hated it.

The other form of involvement is the strange beast that is now masquerading under a number of guises, the most recent of which is ‘crowdsourcing’. Crowdsourcing is actually a term that describes ways of people feeding in small bits of something (ideas, money, processing power) to build a bigger something.  It doesn’t mean just asking people for ideas, like when a  service or project will ask a group of people with mental health difficulties ‘so, tell us what you would like or tell us your ideas.’  This is often accompanied by lots of open gestures inviting people to share their ideas.

It may sound like this is more likely to generate good ideas for change, but usually it doesn’t. Putting people on the spot and asking what they’d like generally delivers responses that look very like what people have had before.  Innovation is a process, not an endpoint   It also makes no difference at all if the organisation doing the asking holds all of the cards and plays them very close to their chest, failing to give any indication of whether it financially or organisationally possible to take any of these ideas forward.  Most people aren’t app developers.  Most mental health professionals aren’t app developers.  Both groups might be app users; both will have different perspectives on what problems need to be solved.   Both will probably not pull a winning tech idea out of their hats like an end-of-the-pier stage magician.

Consultation doesn’t change things because it only asks how much people like your idea, product or service.  It doesn’t really involve any collaboration at all.  ‘Crowdsourcing’ looks as if it changes things but actually doesn’t, as the there is a fundamental dishonesty at work; we’ll ask you for your ideas but we’ll only do the ones that suit us and we’ll never tell you the reason why. It looks collaborative but is, in most cases, just a way of dressing up consultation as participation without fundamentally changing the way it works.   Being cynical, ‘crowdsourcing’ just assumes that no one who belongs to a category of people who experience difficulties could come up with a worthwhile idea in the first place because it separates them from any of the mechanisms they might be involved with to make the solution to a problem happen.  People who say ‘ideas don’t care who has them’ are usually people who want your ideas for their own and have no intention of involving you in any future application of them.

The Innovation Labs used persona work (collaboratively making up a fictional character representative of a particular set of user needs based upon real experience) to enable those involved to bring their knowledge of the real world of mental health difficulty to bear upon the question of ‘what could be made that would make life better?’  The development of Doc Ready used the same technique.

Instead of saying to people ‘what are your problems and how do you want them solved?’, the process asks ‘what kinds of challenges might different young people with mental health difficulties face and how haven’t they been answered so far?’  Using persona allows people to move from just discussing their own experience to collaborating on ways of solving problems faced by others.  In essence, it helps us to move on from either of the two traditional involvement mechanisms in mental health.

For anyone’s involvement in a project to count for something it must have a weight and a value. The best way to give it that weight and value is to make sure that it is directed toward advancing the progress of that project. If you’re trying to build something for people to use, how can it make sense to leave people out of the process of building it?

Often people who experience mental health difficulties are involved in projects on the basis that ‘they have lots of personal experience’ but in ways that are actively structured to minimise the importance of their contribution. Asking for people’s opinions or people’s ideas without any idea of how they’ll change the shape of your project might be market research, but it sure isn’t involvement. And it definitely isn’t co-production.

When I talked to people about the Doc Ready idea their response ranged from ‘cool’ to erm…’. Some of them had plenty of opinions about how it might, or might not, work.  However, as expected this didn’t really give us any solutions about how to make Doc Ready happen or what the final thing should actually be like.

This is why it makes sense to co-produce and co-design.

In app development it’s also pointless showing people a photoshop mock-up of your app and asking them what they think.  They’ll either say ‘lovely!’ or ‘rubbish!’.  This won’t tell you anything about the thing that you’re actually making.  As the folks from Neontribe are fond of saying “Photoshop mockups sign checks with the end user that your development team can’t cash.” The point being it’s only worth showing people things they can break, play with and make fall over.

Adopting ‘fail often, fail fast’ and other similar lean development mantras we sprinted ahead and created six paper prototypes of ways the app could work. Made entirely out of paper, these were real concrete devices with sliders, buttons, text panels, menus, and even pop-ups. Watching testers try them out and pull them to pieces gave us direct, experiential insight into the functions and methods of interaction that people would value most in the app.

Using this learning we built a quick, rudimentary working version of Doc Ready. It included a version of the cloud of experiences and feelings that was very detailed. When we showed this version to people they hated it.  So we created the same function in a different way, with more space for people to input their own experiences and far less ‘symptoms’. They much preferred this.

What’s important to realise here is that it didn’t matter how much we’d talked to people about how this core bit of the app would work, it was only when they saw it and used it that they could see what they did and didn’t like about it.

It’s vital in innovation to have this kind of flexibility in your development process. You may need to change, change and change again before something works; so quickly getting to the point where you have something you can test is vital.  If you don’t, you’ll be a year and 90% of your budget into your project before the people who you’re building it for get the chance to tell you it’s crap.

In a mental health service world of limited resources and squeezed funding it’s tempting to see doing stuff with people and spending time with them as a luxury.

But if you don’t spend time with people, if you don’t get up really close to how they feel about the problem you think needs to be solved and as importantly keep returning to those people every time you think you’ve solved one of the problems they set then you might as well dig a great big hole in the grounds of your building and shovel in bundles of cash each day gnashing your teeth, shaking your fist at the sky and howling inconsolably ‘we built it and they didn’t come.’

Which is no fun at all.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

(Much of the content in this talk appeared in a different form at the Innovation Labs website)

 

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Is #mentalhealth anti-stigma work a drive for acceptance or a driver for change?

The below is the original draft of an article by Mark Brown which appeared in a different form at BBC Ouch under the title ‘Viewpoint: Talking about mental health is just the first step’

More people in the UK than ever before are talking about mental health and mental illness.  On February 5th this year, people will be encouraged to spend five minutes talking about mental health as part of the second annual Time to Talk day, an initiative of the national anti-mental health stigma campaign Time to Change.

Launched in 2007, Time to Change is a partnership between Mind and Rethink Mental Illness, two of Great Britain’s largest mental health charities.  Its website states that it is a “groundbreaking anti stigma campaign across England to challenge attitudes and change behaviour around mental health problems”.  Time to Change is based on the idea that more people speaking about mental health difficulties will remove judgemental attitudes toward those people who experience them.

Stigma is the interaction between people or characteristics that society feels unacceptable and the people this labels.  Experiencing a mental health difficulty can be isolating and frightening.  We can find ourselves unwilling or unable to talk to others about the things we experience because we are fearful of the consequences.  People experiencing mental health difficulties like schizophrenia, bipolar disorder, eating disorders and depression have often experienced prejudice, discrimination and have often been  excluded from areas of life and community in which they might otherwise expect to take a full part. Part of stigma is the internalised feeling of shame for being what you are, and receiving positive responses rather than negative ones can help to dispel this feeling.  From an individual perspective, it can be liberating and validating to be able to ‘come out’ and speak about difficult experiences or sensations.

To date, Time to Change has received £38million in funds to change our minds about people with mental health difficulties: £18m in its initial phase, £16m from the Department of Health and £4m from Comic Relief in 2011; with more funds promised to carry the programme beyond the end of its current funding March 2015.  According to Mind, the most recent National Attitudes to Mental Illness survey, carried out in 2013, found that “since the beginning of the current programme of Time to Change (2011) an estimated two million people – or 4.8% of the population – have improved attitudes towards people with a mental illness.”

Whether the rise in positive attitudes translates into an improvement in the lives of those with mental illnesses is something critics of the programme question.  Time to Change was launched at the beginning of worldwide financial crisis and has run alongside  austerity reforms to social security protections such as the removal of Incapacity Benefit, the introduction of the Work Capability Assessment and cuts to social care and NHS funding which some source allege disproportionately affected the lives of many people with mental health difficulties.  Critics of Time to Change claim its approach is too shallow and does not examine ways in which prejudice and discrimination can be structural as well as personal.  Some liken Time to Change to similar campaigns in the broader Disability world which have focused on slogans such as ‘See the person, not the disability’ which focus on being ‘nicer’ to individuals rather than changing structures, laws and circumstances that disadvantage Disabled people collectively.

Some argue that Time to Change actually makes it more difficult for people who do have stigmatised experiences such as voice hearing; or who have periods of illness or symptoms that disrupt their lives; by pushing these less palatable experiences to the margins in an effort to sanitise the image of mental health difficulty for public consumption.  A subsection of campaigners and activists feel that the focus on the telling of personal stories of mental health difficulty to fight stigma has individualised understandings of mental illness, moving the debate further away from what concrete, collective social changes need to be made to support people with their mental health.  These people would claim that shame is not their problem but systematic prejudice and discrimination.

Over the lifetime of Time to Change discussion about mental health has risen in prominence in the public sphere, as have media portrayals and news coverage. The Liberal Democrats, as partners in the current Coalition government have given prominence to mental health within their campaign for this year’s general election and have promised new funds and standards for NHS mental health care.

As with all mass campaigns; a message clear enough to penetrate the background chatter of everyday life is in danger of losing some of its nuance and context.

The focus of Time to Change is not solely on encouraging people to have their first conversation about mental health, but this has been its most prominent call to action. The conversations that Time to Change encourages, from five minute chats to grand media saturated political performances are an attempt to build the platform for a wider change.  There is a danger that the people talking about personal experiences and others accepting them is seen as the goal.  For each year that it and programmes like it continue, the number of people who have already had their first conversation about mental health will grow.

Today, on Time to Talk day, some already comfortable speaking about mental health and mental illness will asking: if we’ve started people thinking and talking about mental health and how they behave towards people with mental health difficulties, how will we move people on to thinking about the way that society as a whole treats those same people?

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

 

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The best effing lonely – social media and #mentalhealth

The following is the text of a talk given by Mark Brown as part of a panel discussion at London’s Dragon Cafe on February 2nd 2015 addressing the topic ‘We need to talk about… The impact of of technology and digital culture on mental health’

Hello.  I’m @markoneinfour off of that twitter.  I do mental health stuff and I bloody love social media, even when I really hate how some people use it.

I wouldn’t be here talking to you if I hadn’t come across the madosphere, the mental health blogosphere (what we had before we did twitter).  It was people like my fellow panelist Seaneen Molloy-Vaughn who showed me that people like me could own language and ideas about mental health and that it was possible for ‘us’ to define an identity that wasn’t limited by what ‘they’ said we could and couldn’t say. It was the madosphere that inspired the mental health magazine One in Four that I ran for six and a bit years and which still inspires the mental health and digital stuff I do now (which I’ll tell you more about later!)

 So first thing: social media is here, and rather than being something new, it’s like telly, it’s like radio, it’s like text messages, phone calls, cinema, telegrams, the printing press, telephones.  Just more so.

The social web is a lot older than you’d think.  Think widespread blogging is new?  Blogger the blog platform launched in August 2000.  Think tweeting or facebooking is a new thing?  Twitter launched in July 2006, a few months before facebook got its first newsfeed and started to look like the facebook we know and love (or hate).  Youtube launched in November 2005.  Social media is weird.  It feels ‘new’ at the same time as feeling like it’s been around forever.

We still struggle to work out where it fits in. Opinion varies from ‘it’s completely irrelevant’ at one end of the spectrum to ‘it’s the most dangerous thing that has ever happened in the world EVAH’ at the other.

Social media doesn’t just happen in front of a desk top PC.  It happens in your pocket or bag, it happens on the bus, it happens in hospital (if you’re lucky), it can happen anywhere you’re getting an internet signal.   The price of things like tablets has dropped through the floor over the last couple of years and the UK has a surprising amount of free wifi hotspots.

People from all around the world who experience mental health difficulties are ‘meeting’ each other in social media.  We’re reading blogs written by each other.  We’re watching youtube videos starring each other.  We’re listening to audio recorded by each other.  We talking to each other in facebook groups, in comments sections of websites, on twitter…  Anywhere there is a space for people to share, speak and comment there is a space for people with mental health difficulties to run into each other.

According to an Ipsos Mori survey carried out for the National Audit Office published March 2013, thirty seven percent of of people with a declared disability were offline compared with fifteen percent of people without a declared disability.  We do not currently know how many disabled people, or people with mental health difficulties are regular social media users.

Still, though, social media has become a space where people with mental health difficulties are finding each other in large numbers

And, in the tradition of large families finally managing to meet for the first time, we’re finding all of the things we all have in common and all of the the things where we really have nothing in common at all.

I think we’re seeing the beginning of a real mental health public opinion, where different groups of people assemble around different ideas.

It used to be really difficult to organise something or to find something out.  Most of the time you needed to know lots of other people and they needed to know lots of things.  Your ability to publicise what you did depended on your budget and access to a photocopier.  Your social relationships were limited by who you could actually run into where you lived.  Loads of people with mental health difficulties never ran into anyone who experienced similar things to themselves unless they were lucky or currently in hospital or accessing some kind of care or support.

For many of us, our mental health difficulties have been misunderstood and in some cases shameful facts of our lives.  Unless we were lucky and met people near us, in the past we have tended to communicate vertically with public services and charities providing us mental health support (evaluation, consultation). Social media lets us go horizontal, talking ‘peer-to-peer’ with others with similar experiences across the world.

Social media, 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.  It’s also created spaces where mental health difficulty isn’t hidden.

Social media then, is a space where we can learn from each other, debate with each other, band together and try to make change with each other and challenge the idea that who we are, want we want and what are lives mean should be defined by others.

For many of us social media at its best is a space where we meet with other like minds, discuss, share and learn, both about others and ourselves.

What’s interesting is that social media is, still, somewhere there is a more level playing field between established ‘professionals’ and the rest of us.  Some mental health bloggers have more readers than the trusts that provide them services.  Some people with mental health difficulties on twitter spark far larger debates than professionals in the same space.

Social media is still, for the time being, a place where we can find power we might not access in other ways and other places.

Most of social media happens to some extent ‘in public’ or at the very least involves interacting with people, often strangers.  People keep talking about the risk of social media.  There’s no doubt this risk exists, but it is, sadly, no different from the risks that exist in the offline world.  Women experience misogynistic abuse online and offline too. Racism, sexism, homophobia, hideously prejudiced ideas about mental health, all exist online too. But without risk there’s no possibility of something new.

Social media is here to stay.  It can be awesome.  Much of my life after my period of ill health and unemployment is, in some way, related to taking risks in social media.  I literally wouldn’t be doing the speech today if I hadn’t posted some bits of writing online back in 2002 and got talking to people.

There are huge potential benefits and also sometimes huge drawbacks.  When awful stuff happens on social media it doesn’t feel like it happened in a distant computer place.  It feels like it happened whereever you checked your facebook or looked at twitter.

We need to stop asking ‘is social media bad for our wellbeing?’ and ask ‘how can we make sure people are getting what they want and need from social media?’

I just want to finish on a brilliant tweet I saw someone retweet on twitter.  I know nothing about the person who tweeted it, nothing about where it’s from,  but I thought it was a good place to end.  It’s from:

https://twitter.com/NJPsychDoc/status/294599813322928128

‏@NJPsychDoc and the tweet goes:

My Therapist said that twitter is for lonely people. That dumb-ass idiot doesnt realize this is the best fucking lonely ive been in years.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

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