Discussing public involvement in health research: your chance to chip in #CRNEngage

When we think about health research chances are we picture laboratories and people in white coats dropping things into petri dishes and looking at clipboards.  When you manage to escape from your B-movie visions of scientists, you realise that health research is something that runs through health and social care in general like a letters in a stick of seaside rock.  Fundamental to health research is actually trying things with patients and learning from members of the public how healthcare actually feels to those on the receiving end of it.  This makes the question of who, how and why people become involved in healthcare research a vital question for the not just our NHS and social care as it stands now, but for the whole healthcare system, and medical treatments and options we have in the future.

On Wednesday 4th and Thursday 5th October I’m going to be live tweeting using the hashtag #CRNEngage from the National Institute for Health Research Clinical Research Network Strategic Leadership Summit for #beyondtheroom.

The headline for the two days is the question: how do we best involve people in health research and how do we tell the story of what health research does?  I’ve been invited to live tweet from the event as a way of involving people who aren’t professionals in research and engagement in what happens within the room.

The future of health and social care depends on today’s research

The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. As the NIHR say: “The future of health and social care depends on today’s research.”.  The NIHR want to support more quality research in the NHS and social care; and supports  increasing the speed with which discoveries are turned into change that benefits people.   The Clinical Research Network (CRN) is the part of the NIHR that puts together the structures, guidance and support that makes it possible for researchers to work with the NHS and social care. The CRN also supports patients to be involved in  new treatments and and carry out health-related research.  They’re particularly interested in ways to make sure that patients and the public at large are included in discussions about how, when and why such research is carried out.

Over the two days, the attendees of the summit will be discussing a wide range of subjects related to people’s involvement in health and social care research.  People are vital for the development of research.  How do we make sure everyone who might want to be involved can be and that no community or group of people is left out? How best can research be made open to members of the public to be involved in? What makes it difficult to take part in research?

These topics will include broader discussion of ways to engage people in thinking about and taking part in health research; how digital might be better to involve people in thinking about and taking part in research and how, in general the value and opportunity of health research might be best put across to the public.  These things usually fall under the slightly dry term of Public and Patient Involvement (PPIE) but are actually about the living breathing heart of research: people and their experiences.  A panel discussion will also take place at the summit where some of these issues will be discussed.

I’ll be tweeting both on the afternoon and evening of the 4th and throughout the day on the 5th and I’m looking for your help as people interested in health and research to help me to raise questions and feed in points of view and experiences to the conversation happening at the Summit.

The two days will prove to be interesting, but will be even more interesting if people who are members of the public and patients can help those attending to reflect on how health research looks and feels to those not involved in carrying it out and designing it.  If you check in on the hashtag #CRNEngage across Wednesday 4th and Thursday 5th of October and throw in any thoughts, observations and questions I’ll be able to raise them with the attendees.

Having people looking in via social media will help to give a perspective from lived, real world experience on the discussions happening in the room and will hopefully help to really bring into focus the challenges and opportunities for all of us to help make health and social care better.

Join me (@markoneinfour) on twitter at the hashtag #CRNEngage from 3.00 on Wednesday 4th October.

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What we talk about when we talk about coproduction in mental health

The following is the text of an opening speech given by Mark Brown at ‘Creativity in Coproduction’ conference at the King’s Centre Norwich on September 26th 2017

The first thing I want to tell you about coproduction is it’s really, really hard.  It’s something that exists in theory far more than it exists in actuality.  If you get away from using coproducton as just a description for an approach to making thing happens you have to think about what coproduction actually means.  Coproduction means ‘making together’.  It sounds simple.  From childhood we learn to play cooperatively, to all muck in to make something bigger and more enjoyable than what we could have made on our own:  a glorious image of carefree imagination and harmonious satisfaction.  But if we think back to childhood with slightly less rosy glasses we’ll also remember the fallings out, the arguments, the feeling of being picked last for the team, the kid who always took their ball back and went off in a huff if they didn’t get to be captain, the ridiculous longstanding vendettas and tearful recriminations when the games fell apart or someone didn’t follow the rules that everyone else had agreed on.

Working together on things is amazing, but it’s also difficult because working together is a bit of work in itself aside from the actual thing you’re trying to create.  Coproduction can be amazing when it works, but as we’ll hopefully hear and experience today, making it work is half of the battle.

As is the way with many ideas that are thrown about in health and social care, coproduction is an idea that originally came to prominence as a solution to a particular problem then somehow broke free of that original problem and, like a story that is passed from person to person; from campfire to campfire, it lost its origins and turned into something that stood on its own. Lost in the telling, the original problem became obscured and the business of turning coproduction into a training course or an academic paper or call to arms began.

So where did coproduction come from and what problem is it trying to solve?  To understand that we’re going to have to go on a journey, back, back, further back.  Back to a time when men smoked pipes and ignored women and an entire country was still reeling from a great blizzard of destruction and rock ‘n’ roll hadn’t even happened…

Where did coproduction come from?

 

Our conception of public services in the UK really has its beginning in the postwar period with the founding of The Welfare State.  The experience of the war and of war planning had given the UK a taste for big ministries creating things for the common public good.  It was the high point of the dream of planning and standardising everything.  For a while people were over the moon, because suddenly they were getting to access for free things like healthcare and support which hadn’t been open to all previously.  In a world where there was still rationing and where streets in cities still looked like smiles with missing teeth, people were grateful to the clever people who met their needs or at least this was what the public myth told us.  The reality was that there were always people who failed to get their needs met or who didn’t have choices or didn’t feel able to escape from what other people felt was best for them.  People with mental health difficulties often fell into that category.

This is the way with such ideas in health and social care: they turn from something that people do to a thing in themselves.  We end up calling for more coproduction or we end up training people in the idea of coproduction or we end up suggesting coproduction is the solution to all ills.  In reality, coproduction is something messy, glorious, frustrating and disappointing all at once.  In the past seven or eight years coproduction has been something that has been suggested as a solution to all of the challenges that we face in health and social care.  No money?  Coproduction!  Service unpopular?  Coproduction!  Not sure what to do next? Coproduction!  Certain what to do next but not sure if people will like it?  Coproduction!

Originally, coproduction was suggested as a solution to a very particular problem.  Public services, of which mental health support and treatment can be one, were seen as being transactional.  People who were paid designed and delivered services based on research and people who weren’t paid but did need a service consumed what the clever people made.  This was based on a model of public services designed at the time when rational planning was all the rage; where people who smoked pipes and had slide rules in their pocket would look at all of the available evidence and data and decide what people needed and then people were grateful for what they got.  People using a service turned up, took whatever the clever people had developed and then went away again.  Bish bosh. Jobs a good ‘un.

Two forces created the idea that there might be an alternative to this centrally planned world; one from within professions and public services and one from outside.  Inside services people began to wonder if they were indeed getting the right end of the stick about what people wanted.  Why, when we do all of this hard thinking, does it seem like people really don’t like or appreciate what we’re trying to do for them?  What is it we’re missing?  The conclusion that some people came to from within public services was that, perhaps, they didn’t know everything.  One thing they often didn’t know was what it was like to receive a service designed on their behalf by someone who didn’t face the same pressures and challenges that they did.  Public services had spent a lot of time people asking whether people liked things via consultations and involvement of the public; but that still didn’t seem to translate into things that did what people really wanted them to.  By the 1970s, many professionals across health and social care were beginning to wonder what gave them the right to wield such power.

At the same time, over the same period time, people began to examine more carefully whether the services that were being provided really were in the interests of those whom they were provided.  People became more critical of the ability of those designing and running services to define the reality and lives of those who received them.  Across health and social care patient groups sprang up.  In mental health The Scottish Union of Mental Patients was first established by mental patients at Hartwood Hospital in July 1971 when a group of people began to seek better treatment and conditions.  In 1973 The Mental Patients’ Union was founded by people who used Paddington Day Hospital.  These groups tended initially to want to exert pressure on the powers that be to improve standards and remove bad practices.  As time went on, such groups grew and evolved.  Some wanted to be left alone to develop their own solutions and their own services and projects.  Others wanted to change the public sector services that existed.  The charity sector in mental health ranged from being able to include these demands to being completely against them.

So from within services you had people wondering how they might make better services and projects that would really meet the needs of people in ways that didn’t tell them to ‘sit down, shut up and take what they’re given’ and from the side of people who used such services you had people who were increasingly confident in the idea that they knew better than professionals what they and others like them wanted and needed.  Coproduction in its purest sense is like the secret lovechild of those two different trends; people who design and work for services and people who want better ones getting together to make something new happen that wouldn’t have happened in quite the same way if they hadn’t hooked up.  It all sounds simple doesn’t it?  A glorious Mills and Boon romance.  But, like every good love story there must be obstacles along the way.  And, crikey are there some obstacles.

Danger! Risk and reward ahead

In a perfect version of coproduction, people would come together spontaneously, easily decide what they were trying to make and then get on with making it, carrying on until everyone was finished and everyone felt they had made the contribution they wanted to make.  There wouldn’t be set end point from which the project began. Somehow, as if by magic, people would find each other and have all of the right skills and resources to create a magical new thing.  We, however, live in the real world.

One of the first obstacles to coproduction is power.  Some people have control of resources and some people don’t.  Some people are paid for their time and some people aren’t.  In the perfect idea of coproduction people from different disciplines, with different experiences, come together as equals to work on building new things. But there are always constraints to this.  In most coproduction projects someone has already set the initial direction of travel.  From the beginning the project is trying to get to a particular place or has already decided what the particular problem is to be solved.  So, sometimes, it isn’t possible for coproduction to really be completely defined by the people involved in the process.  Some people in coproductive activities will have more power than others.  If a professional has managed to convince their boss that the project they are working on should be done in a coproductive way, that professional will have to answer to their boss, or their funder, or the government.  Even if it becomes apparent for everyone working on the project that the thing they’re working towards won’t be useful when it’s finished because it’s not the thing that people really need, they’ll have to finish it.  In lots of coproductive situations I’ve seen people try to do a really weird thing: they try to avoid doing the thing they’d be good at because they think that is something that gives them power that might make others uncomfortable.  I’ve seen professionals avoid talking about how things in services really work, even though that’s vital knowledge for the coproduced project to work.  I’ve seen people avoid talking about what they know other people want because they’re worried that means that they aren’t doing a useful thing in coproduction.  I’ve seen people from all walks of life ignore their previous experience when coming up with ideas because they’re worried that they’ll break the coproduction spell by pointing out everyone isn’t equal.  In coproduction how we differ from each other is important and making best use of it more so.

Another obstacle is personal resources.  Sometimes when we have a problem we don’t have the resources or the will to be involved in developing our own solution to it.  Sometimes what I want is a transaction.  What I want when my mental health is suffering is a service I can use that is ready for me to use.  At that point I can’t be involved in a twelve month process of designing a service to suit me.  Even if I could, I might try to make that service into one that would be perfect for me at that point without thinking about other people who might need to use it.  Not everyone has the same capacity to be involved; or might need extra help and support to contribute.  Good coproduction works out what it needs to make a project happen and then works out who is best to do what bits.  It’s about finding out how useful you can be to making that project work.  This can be hard for many of us when we’ve had experiences where people have told us that we’re no use to anyone or where we’ve felt rejected or ignored.  Coproduction is the job of making something new, but it’s also an emotional experience and an experience of getting to know and work with people we might never have expected to work with.  This can be difficult for people who work with services and for people who don’t.  It can be hard to learn to trust each other.

A further challenge in coproduction is responsibility and respect.  For many of us who have been users of services and tried to change them our experience has been one of being ignored or spoken over or belittled by people with more experience or what feels like a higher social position than us.  This can make us very good at entering into consultations or meetings and being very clear and very strident about what we don’t want to happen but less used to working with what we do want to happen.  For many professionals, even with the highest of intentions, it can feel challenging to step out of the safety of your professional role and to take part in something more collaborative.  For anyone in a coproduction project, respect for each other and responsibility to the project is vital.  Setting the contract for how you’ll work together is a huge step towards actually getting something you’ll all be proud of out of the process at the end.

A further thorny issue is to whom the final product of a coproduction process belongs.  Coproduction is about sharing ideas and sharing work and making something happen that wouldn’t have happened in the same way if different people had been involved.  If it’s coproduction everyone involved will have made it what it is; but too commonly those on one side of the professional divide get to carry the work forwards and those on the other side get left behind.  A good coproduced project will be thinking about what happens after the process is finished and how everyone involved might profit from what has happened.  I know we’re all doing it for the good of humanity because we are all saintly and have huge hearts; but we also need something for ourselves too so that we can be replenished or rewarded or recognised.

The final issue is working out what is actually good to coproduce.  When I put my bins out I’m happy that the bin people take them away.  I don’t want to meet with them every week for six months to work out exactly how it should happen.  Similarly, if I’m having heart surgery I don’t want to coproduce my surgery with a group of non surgeons who reckon they know what might work.  I do however want the information I’m given and the pre and aftercare I receive to be coproduced by a coalition of people who’ve been through that surgery and professionals who know how the system works.  Knowing why you’re working together and knowing why this is the thing to be working on is vital to ensuring what you make together useful to other people.

Coproduction isn’t magic: it’s people and processes

Coproduction is about power, purpose, respect, responsibility, resources and knowing what will happen next.  Today is about hearing from people who been there and done that and already have coproduced the t-shirt.

Coproduction isn’t easy.  It’s not made any easier by giving it a mythical status or a magical power.  Coproduction is making things together.  It must make good things and it must be a good way of being and working together.  Coproduction is an investment for anyone who takes the risk of taking part.  Being involved in coproduction makes us vulnerable and powerful at the same time.  It’s easy to forget that we are all glorious, complicated, amazing, confusing creatures filled with our own vanities and insecurities and powers and surprises.  We might be keen to be involved in coproduction because we want to change the world; but we have to be prepared for the experience to change us.  Making things together in mental health in an equitable and inclusive spirit requires many qualities of us.  It requires generosity, it requires diplomacy, it requires, and this will sound a little sappy, love and respect for each other.

Coproduction in mental health challenges us to make the things we want to see in the world together.   Coproduction is about putting our values into action and making things that work by making processes for working together that work.

We can’t just say what we’re against or what we’re for. We have to do.

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

 

 

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A provocation: How does public digital policy avoid the dumpster fire?

The following the text of a provocation delivered by Mark Brown to The Digital Humanity in Health and Care seminar series at Futurelabs in Leeds on 27th June 2017.

We invented policy as a way of making things happen.  It’s like the spell we cast, waving our wands and mumbling our incantations, and then expect for the rabbit to spring out of the hat.  Policy is like a map you make of country before you’ve explored it.  It guesses what might go wrong and tries to wish into existence what might go right.

Policy cuts both ways: it mandates for some things to happen and it attempts to prevent others.

When we look at digital humanities we need to be asking: what exactly is it we want to happen?

This is less of stupid question than it appears.  We are currently living through an era of unprecedented change, or at the very least an acceleration of change.  Technology is, whether we like it or not, changing our working lives, our social lives our lives as part of a community and even what it means to be alive altogether.

It’s becoming increasingly clear that technology that may when set out in isolation may appear to be of interest to only a tiny few enthusiasts, hackers and journalists may actually change the very structure of our towns, cities, governments and ultimately countries.  Social media, for example, is still considered by some as a kind of fad or hobby, a frivolous curse upon people’s attention spans and family meals.  It can be that, a cavalcade of  holiday photos and funny cats.  But the same technology, the same digital experience is also now increasingly fundamental in how people relate to the world.  If reports are to be believed, it’s possible that state and non-state actors have used manipulation of the fabric of social media to shift the direction of world defining referendums and elections.  The idea of fake news and the speed with which it spreads may have undermined many people’s trust in the possibility of objective truth. A lonely, angry man with the most powerful position in the world sits in his bedroom tweeting his thoughts to the rest of the world, making stock markets rise and fall and armies to go to red alert.  The business of selling books online seemed at first to only be an issue for tweedy booksellers listening to radio four in dusty shops, instead over a decade it knocked out staples of our high streets one by one.  Our NHS ran aground in places across the country after a ransomware attack as if it had opened a rude picture and then couldn’t close the hundreds of pop ups that followed it.  There is no way now to separate the human world and the digital world.  There is no tech space and meatspace.  There never has been really, but until relatively recently it was still possible to put tech news over in the file marked ‘boffins and nerds’.  Now, if we deal with people we are also dealing with digital whether we like it or not.

I’m not a tech person. I’m not a social policy person.  I am, as we all are, a person living in a digital world.  I’m interested in power and politics and technology.  I’m interested in what levers we can pull to avoid the worst of possible futures.

When I talk about tech I tend to fall back on the techniques that futurists use to try to think about the future and what the tells us we should be doing now.  Futurists deal in three kinds of futures: probable, possible and preferable.

Probable futures are the futures that seem likely to happen if nothing major changes from now, they’re about extrapolating from present events. They’re the futures that are like now, but morer.

Possible futures are the kind of futures you explore by being playful and mucking about. Sometimes they’re explored through stories, or films, or art or imagination. They’re the futures where we look at how bad, how good, how weird the future might be. They’re the versions of the future where we explore our desires or look at how one particular thing might change everything. It’s the jetpacks and flying cars future, if you like. The future that we try on to see how it makes us feel. Possible futures are where we try on our ‘what-ifs’ for size.

Preferable futures are the futures that are somewhere between the probable futures and the possible ones. Preferable futures are the ones that we look at and think ‘that’s where we’re trying to get to’. Preferable futures are the ones that we try to bring about by making decisions and taking actions now, bending the path of the future further towards where we want the future to be and away from the things we think will happen if we don’t do anything and just let events unfold. A preferable future is the one you get to by playing through a possible future and playing through the probable one and thinking ‘how do we get closer to what we want to happen, rather than what will happen anyway’.

This brings us back to my question: what do we actually want to happen?  And that’s where things get sticky and where the discussion of ethics and values comes into play.

Delivering public services is a political act.  The shape of public services and how they feel are defined by political and historical realities. The decision of who pays tax, what taxes they pay, upon whom those taxes are spent and who it is that does the work is political.  The ‘social good’ is not an uncontested idea.

With the ascendency of digital as a transformative agency in society we are looking at very particular historical forces shaping what might come next.  People, technology and institutions intermingle.

To me there are a number of issues that govern what digital public services might look like.

These are based upon ideas about efficiency, ideas about profit, ideas about transfer of responsibility to individuals and away from paid workers

Efficiency and austerity

There are a lot of notions that technology will always be labour saving.  The vacuum cleaner, microwave oven and fridge freezer were sold as technology that would liberate housewives from domestic drudgery, which they did in that sexist conception.  They liberated women to join the labour market, which is brilliant, but they didn’t really remove the gender division around housework.  Working women still on average do much more of the house and caring work..  In the public sector we often confuse technology with the idea of efficiency.  Technology will do things more quickly, more cheaply, with less work.  The question we have to ask is whether this is the correct way to view the role of technology: as a kind of magic partner to austerity and to limited spending horizons?

One of the areas that is most important is working out what is transactional and what is relational in public services:  where do people want straight forward, easy to access processes and where do they want people and complexity and care and support.  I think we have to face that different people have different needs from the same public service process.  Anywhere where a process is more than a simple exchange of information will mean that some people are looking for something more.  It often seems to me that we spend a lot of times trying to convert relationships in public services into transactions.  Obviously, I do not want to meet weekly for an hour with a representative of the council every time I pay my council tax, but I might very much value something more than a text message to check up on me in my own home.  The trick we will have master is establishing who needs what from our processes and making technology a lever to make that happen.  Intrinsic to that is providing digital to people who want digital transactions and then using the savings to increase the people time available to those who want and need it.  But how would we do that?

Profit and privatisation of the commons

In a classic business sense disruption is finding a business model that once introduced to the market will make it impossible for everyone else to do business in the way that they previously had. The ambitious digital disruptor moving into the social problem space may talk a very good game about disrupting the problem; but hidden in that either wittingly or unwittingly is a wish to disrupt the market. Which means finding a way of inserting themselves and their idea into the stream of money that is currently flowing in that particular sector.

An ambitious digital disruptor wanting to solve social problems may not see that they are ultimately trying to break completely the existing ways of delivering services and place themselves there instead. Or they may, because they can see that they would get to keep the money if they were successful. In the same way that robots have reduced much manual labour to obsolescence, so the digital disruptor might be aiming to do the same in an area of social problem. And much like robots and labour; they know that it’s the people who invent the robots who get to keep all the money.  It is conceivable that we might, forever, give away elements of our public services to private companies.  Managing that will be a policy challenge, especially if tech is not well understood by public professionals as recent events such as the Google Deepmind deal with the Royal Free London NHS Foundation Trust suggest.

To quote from a news story:

“The deal with The Royal Free was quietly signed in September 2015 and it gave DeepMind permission to process 1.6 million NHS patient records from November 2015 to November 2016. The records belong to patients that have visited Royal Free Hospital.

“DeepMind said it needed access to the medical records to help it test its kidney monitoring mobile app, which is called Streams and has the potential to save lives by sending out alerts to clinicians when their patient’s condition suddenly deteriorates.

But medical records contain some of our most private information.”

 Google really did get a very good deal there.

I recently reviewed a paper on the ethics of recommending digital services to patients in mental health for The Mental Elf. Bauer et al.’s (2017) open access paper Ethical perspectives on recommending digital technology for patients with mental illness if you want to have a look. The paper’s authors had some very strong observations:

“The authors were at pains to point out that even healthcare professionals enthusiastic for the implementation of digital technologies may not have an understanding of the wider digital economy and the potential points of tension between its practices and accepted ethical standards. As such, they recommend healthcare professionals should have access to education and regular updates on the state of the industry from independent sources rather than the seller of services themselves.”

Devices, websites and apps regularly capture and transmit data about individuals.  As the authors of the paper say: “In the past, it was only profitable to collect personal data about the rich and famous (Goldfarb and Tucker 2012). The costs of data capture, storage, and distribution are now so low that it is profitable to collect personal data about everyone… Data from sources that appear harmless and unrelated may be combined to detect highly sensitive information, such as predicting sexual orientation from Facebook Likes (Kosinski et al. 2013).”  The authors quote Eric Schmidt (Executive Chairman of Alphabet, Google’s parent company): “We know where you are. We know where you’ve been. We can more or less know what you’re thinking about. (Saint 2010).”

They go on to say: “At first glance, the use of personal data for commercial profiling and medical monitoring purposes may look identical. But the motivation for using algorithms to define emotions or mental state for commercial organizations is to make money, not to help patients… There must be a clear distinction between the algorithmic findings from the practice of psychiatry, and commercial findings for profit, even though similar analytic approaches are used.”

The authors were very worried about the deal with the devil that public services might make with private providers where the data is the real thing that is of interest to the private provider.

Companies provide free-to-the-user services by collecting huge amounts of data, which is turned into data products sold on to third parties. This includes data from medical websites and apps. This trade allows for the creation of decision making tools that operate without human involvement, something that concerns the authors. “The collected data based on tracking behaviors enable automated decision-making, such as consumer profiling, risk calculation, and measurement of emotion,” they write. “These algorithms broadly impact our lives in education, insurance, employment, government services, criminal justice, information filtering, real-time online marketing, pricing, and credit offers” (Yulinsky 2012; Executive Office 2016; Pasquale 2015). The authors worry that these algorithms may compound biases and introduce new inequalities and that healthcare apps and websites might feed into this. The authors claim that: “People divulge information online because they are susceptible to manipulations that promote disclosure” (Acquisti et al. 2015).  People are keen to keep their medical data private; but are often inadvertently sharing large amounts of data about themselves as they interact with digital products and services. In the use of medical websites and apps, the line becomes blurred.

How does public digital policy avoid the dumpster fire?

The culture of silicon valley is increasing looking, in the American phraseology, like a dumpster fire.  Libertarian ideas run riot, with the very ideas that our public services in the UK are founded upon seen as a deadly infringement of the rights of the individual to choice.  Low tax, low regulation is the mantra.  The ethics of digital creators, investors and developers may run contrary to our core purposes and ethics in running public services such as health and care.

This shades into my final concern:  how do we decide whether digital technology represents a transfer of power to individuals and not just a way of saying ‘you’ve got your own tools, make your own public services?’  This in some ways is that libertarian impulse that always positions doing it yourself as being the ultimate goal, doing away with public services all together.

I think the binary we need to be looking at is a line with care at one end and autonomy at the other.  Depending on who we are and what are problems, needs and desires are we will be positioned somewhere along that line.  We may be at one end for some things and at the opposite for others.  There are some things in my life where I want the help, concern and care of others. There are others where I want other people to just get out of my.  As with the consideration of whether services should be transactional or relational, so we must be looking at whether people want autonomy or care and when and how they want it.

We really need to be using these kinds of thoughts as a way of exploring not just reactive public policy but public policy developed by considering probable and possible futures so that we can actually decide upon a preferable one.

We need to be leading the discussion about the future that we want and the future of public services that we want.  Future policy should reflect the future we want.

I really don’t think we know what people want from digital public services because people do not feel they have any power in the face of digital acceleration.  People are still taught to consider digital as a specialism rather than a practical thread of life that affects everything.  In the end, the only thing that will make any public service digital policy humane is people.  People who make policy, people who are on the receiving end of policy, people who put policy into action: it’s up to us to make the arguments for the best of all digital worlds.

What is the best of all digital worlds?  Well, that’s a work in progress.

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

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The Angel of History: #mentalhealth and technology at #mindthegap2017

The following is the text of a keynote speech given by Mark Brown to ‘Mind the Gap’ the Newcastle Students Union Mental Health Conference on 29th April 2017. The live stream of this speech can be viewed here 

I’ve been given the job today of talking to you about mental health and technology.  To do that I’m going to have to talk about presents, pasts and futures.

I got into doing mental health stuff because of my own experiences.  I was very ill when I was young, had a disastrous attempt at trying to get a degree, did the first year of a degree twice and then was unemployed.  I still have mental health difficulties now.  They’re not in my past, they’re in my present and will be in my future.

I didn’t have my first email address until I was 23. Didn’t have a laptop of my own until I was 30. I missed the dotcom bubble completely.  When I first got the internet at home I started to share fiction I’d written on a website that I eventually ended up editing for a job.  In 2006 I started a magazine called One in Four that was written by people with mental health difficulties for people with mental health difficulties.  We did that for seven years.  It nearly killed us. Some people liked it, some people didn’t.  It didn’t make enough money though.  It didn’t make any money.  I had been inspired to start the magazine by reading blogs written by other people with mental health difficulties back in 2004/2005.  So, trying to keep the money coming in to keep the magazine going I ended up doing lots of different mental health things, that did two things.  The first was that it got me an opportunity to speak to lots of people about mental health and it gave me a chance to work on stuff that might change things for us, people with mental health difficulties.

In 2009 I joined twitter and somehow, as @markoneinfour, ended up with thousands of followers and the opportunity to see what social media was making happen.  It was making it possible for us to find other people who’ve experienced things we have and to have conversations and find out where we differ from each other and have things in common. Just watching what happens when people can finally find each other and ideas that might not have been available to them in their own town or street has been incredible.

What I also found out was that changing things is hard in mental health, wonderful social media aside.  And one of the reasons for that is that we find it very hard to see futures in mental health .

There was a time when I didn’t think I had a future.  There are times where I still don’t.  Living a life with mental health difficulty can rob us of our sense of the future; reduce us to living from moment to agonising moment.

So that’s why I think the future is so important.  To live in a big long now and to accept that nothing will ever be better is a kind of exquisite torture.

This is what led me to technology as a way of to make change happen for people who experience mental health difficulties, because I want a better future.

So, in talking to you today I want to put together a toolkit for ways of thinking about what technology might do for mental health, reasons why that isn’t happening, ways that you can help get it to happen and you can keep yourself going in helping to make preferable futures happen when, if like me, you’re a bit mental yourself.

Probable, possible and preferable futures

First it’s useful to set up a framework to help us think about the future for mental health.  Futurists or futurologists are people who have the job of making guesses about what the future might be like.  They usually do this by studying the present and trying to discern which way things are going.  I’m not a futurist, but my time spent doing mental health stuff has given me the opportunity to look pretty hard at the present world and the way it does or doesn’t help people have the lives that they should reasonably expect.

Futurists often use a relatively simple way of trying to understand what the future might hold so they can make better guesses.  They deal in three kinds of futures: probable, possible and preferable.

Probable futures are the futures that seem likely to happen if nothing major changes from now, they’re about extrapolating from present events.  They’re the futures that are like now, but morer.

Possible futures are the kind of futures you explore by being playful and mucking about.  Sometimes they’re explored through stories, or films, or art or imagination.  They’re the futures where we look at how bad, how good, how weird the future might be.  They’re the versions of the future where we explore our desires or look at how one particular thing might change everything.  It’s the jetpacks and flying cars future, if you like.  The future that we try on to see how it makes us feel.  Possible futures are where we try on our ‘what-ifs’ for size.

Preferable futures are the futures that are somewhere between the probable futures and the possible ones.  Preferable futures are the ones that we look at and think ‘that’s where we’re trying to get to’.  Preferable futures are the ones that we try to bring about by making decisions and taking actions now, bending the path of the future further towards where we want the future to be and away from the things we think will happen if we don’t do anything and just let events unfold.  A preferable future is the one you get to by playing through a possible future and playing through the probable one and thinking ‘how do we get closer to what we want to happen, rather than what will happen anyway’.

The probable future for mental health has never looked more worrying.  Levels of illness and distress are rising while all we have is the same old suggestions and the same diminishing pool of ideas. There isn’t a past to return to for mental health.  Things were not better in the old days.  We have to face the future.  I was recently spoke at an event about mental health and digital technology.  I told the audience:

“We are in the middle of the biggest roll back of public spending in generations.  In the form of brexit we’re embarking on the biggest experiment in leaping into an economic and geopolitical unknown that our country has seen in at least a lifetime.

“In mental health we can often assume that the world we see around us will always look much the same as it does.  That institutions like this one we’re sitting in will always be here.  That there will always be an NHS.  Always be social care. Always be human rights.  Always be helplines.  Always be homes and jobs and opportunities.  I think right now we can assume no such thing.

“That is what makes our job all the more important and desperate…  In much of the adult mental health world our possibilities are plateauing, either because we have gotten everything we can out of a particular technique, idea, practice or treatment; or because public and political will to provide the resources to fully use something to change people’s lives has flatlined.  There is nothing traditional on the horizon that will save us from failing people with mental health difficulties in worse and more painful ways in future than we are today.

“Winter is coming”

This might seem gloomy. It’s meant to be, because that’s the future where none of us get to influence what happens, where the problems we have now don’t get solved and just keep getting worse.  It’s the most likely future if we don’t start doing things now.  That’s the future we have to fight against.

We’re going to have to look as possible futures and work out what kind of future we’d prefer.  And the seeds of possible futures for mental health and technology are all around us, if we get used to looking for them.

I am a cyborg

I stand before you all as a kind of cyborg.  I have already given over much of my life as a person who experiences mental health difficulties to being assisted by machines.

Every day I rely upon digital technologies to offset my cognitive deficits; to help me to plan and manage my time; to stop me getting lost between appointments; to keep up with important information; to make it possible for me to work in conditions that do not exacerbate my condition and to make it possible to communicate with people.

Without this technology I have to travel long distances to do important tasks; am at risk of missing out on information vital to my wellbeing and am in danger of losing my job through lack of adaptation and loss of effectiveness.

Through finding the right combination of digital technologies I’ve become far more able, independent and able to take part on my community.  It’s giving myself over to this technology, becoming a mixture of person and machine that has got me to where I am today, standing in front of you all.

It sounds amazing and complex.  What is this special mental health technology?

My phone.  My simple, cheap, 80 quid chinese mobile phone.  My very cheap phone has basically turned me into a poundshop robocop, following orders and stomping about.

It’s just the combination of stuff like calendars, email, maps and the ability to store and work on documents online.  All of the amazing stuff that an average cheap laptop and a rubbish phone make possible when I can get online has changed my life.  I don’t need to commute to the office; my phone reminds me of appointments, twitter and other social media keep me in touch with people and what’s happening.  Nothing specialist.  Nothing specifically mental health intended.  Just basic stuff that everyone has if they have a computer or a smartphone.  Just useful digital tools that I use to solve problems that I have and that offset my cognitive deficits and to mitigate the effects of my mental health difficulty.

These everyday, non-specialist apps and functions are often the difference between me being able to do my job and not being able to do any job at all.  They aren’t even designed with a specialist mental health purpose in mind but make a massive difference to me and my wellbeing.  Now, imagine we began to develop digital apps and services or to use digital tools in a way that would solve specific problems that people with mental health conditions experience; or to use digital technologies to provide new options for people to access the help we provide in way that suits them.

So there’s one possible future: a world where digital technology designed specifically for the problems that people with mental health difficulties have in their is available to all and makes life better for people who want to use it.  It doesn’t sound too much to ask, does it?

Well, let’s have a look at that.  There is a weird thing that happens when we talk about technology and mental health difficulty.

The conversation always gets sidetracked.  It’s like we can’t keep our eyes on the target of doing things with technology that make people’s lives better in the here and now and we always end up talking about how we can do treatment via computers or apps.

There are a number of reasons this happens, all of which are human problems, not machine problems.

There are three myths that hold back people thinking about using technology to make life for people with mental health difficulties better.  The first myth is that technology is exclusive and excludes people.  The second is that technology is complicated for its users.  The third is that technology can never understand the needs of people with mental health difficulties.

Myth #1: technology excludes people.

There’s a weird paradox with digital technology.  It both feels like it’s been around forever and also that it’s new.  That’s because we’ve been living through a period of technological acceleration where certain advances in technology have made things move more quickly.  This leaves us confused about the extent to which certain technologies are new and exclusive and which ones are common and widely accepted.

Televisions, for example, stayed roughly the same for a good thirty years or so as big square boxes that sat in the corner of the room.  They went from being covered in wood panels, as all good seventies technology was, to being made of shiny silvery plastic or classy matt black, but they were basically the same. Then, very quickly, that technology became obsolete when cheaper ways of showing repeats of Bargain Hunt and The Jeremy Kyle Show won out.   But we’re still kind of confused as to when that particular technology actually arrived.

You can hear this in the way that right wing political rhetoric still talks about flat screen televisions as if they are the height of high tech luxury – “On benefits but can still afford a flat screen television” – as if flat screen televisions are new and the preserve of some kind of technological mega rich elite.

For some people, it still feels like this very common, increasingly cheap, technology has just arrived.  For the rest of us it feels like somehow it’s always been here.

It’s weird to think just how recent the things in technology that make our conversations about technology and mental health feel real and possible actually are.

The iPhone was released on June 29, 2007 in the United States.  The first commercially available smartphone running Android was released at the end of 2008 in the US.  The first iPad was released on April 3, 2010, with Android and Windows tablets following soon after.

In the UK we had 3G mobile networks (networks able to carry enough information quickly enough to make mobile internet use possible) from 2004 onwards; with 4G arriving in 2008.

Digital technology became mobile and, as importantly, it plummeted in price. In fact, we’ve got to the point now where tablet and mobile sales are beginning to slow; mainly because the UK is awash with devices that are ‘good enough’ and people don’t see the necessity in upgrading or people pass on their old devices to friends, family or sell them to Cash Converters.

I’m sick of sitting on panels where someone from the audience sticks their hand up and says ‘but what about people who don’t have access to technology? Aren’t we excluding them?’  My answer is always this: ‘I think the statistics indicate that most people have access to digital technology if they want it.  I think you’re afraid of the changes digital might make to people’s lives.’

According to Ofcom, in the first quarter of 2016 81% of adults in the UK had either fixed or mobile broadband.  66% of people in the first quarter of 2016 use their mobile handset to access the internet.

Although, it does matter who it is that doesn’t.  According to The Office for National Statistics, as of May 2016 25% of disabled adults had never used the internet.  Almost all adults aged 16 to 24 years were recent internet users (99.2%), in contrast with 38.7% of adults aged 75 years and over.

Digital technology isn’t going to go away.  However there is one way that technology does exclude people, people like me with mental health difficulties, but I’ll get onto that in a minute.

Going back to the person from the audience sticking their hand up, I have said on at least one occasion:  “Unless you want to find out who the people are who don’t use digital technology and why and whether they actually want to or not, I’m going to conclude that it’s probably you that isn’t interested in the possibilities of digital and you’re just speaking on their behalf without even asking them.’

That was them telt.

Myth #2: Technology is complicated

Science fiction writer Arthur C. Clarke, writer of 2001 amongst other things, back in 1963 wrote  ”Any sufficiently advanced technology is indistinguishable from magic.”

And, when you get something well designed, that’s exactly what it feels like: a little touch of magic in your world.  The gap between what you feel like you should be able to do using it and what you actually can do disappears.  You stop even wondering how it does it; how many hours and hours it took to develop it and by what technological magic it happens.  You just go ‘ooooooooooo’ or, more usually, you just accept it does what it does and then you start to show people the results of what it does.  How it does it stops being important.

A good app is one that does the thing you want it to do in a way that you expect it to.  The right technology with the wrong interface is the same as the wrong technology.

It might take a huge amount of time and working with people and testing and failing and rethinking and trying again, all hugely complicated work to be done; but in the end the objective is to create something that just works.

When we get tech right, that’s what it does.  It just works, like magic.  But how do we make sure that we get it right?

Myth #3: technology will just never understand mental health.

In mental health we can fall into the trap of thinking that no one understands us and our needs  We believe it’s our fault that we cannot get on. We are failures at being human. In our mental distress we are misshapes, bad programs, aberrations. Unlike other people with disabilities we yearn to be let back into the normal world. Most of us yearn to pass, to be invisible, to be normal folks. We, those in need, are expected to, and expect ourselves to, find within a reserve of energy, a magical pool hidden within the source of our being that will rejuvenate and fix us. Somehow we believe that one day we will be reborn, springing from the garbage of our disordered lives and glistening like stained glass dragonflies free of the hideous, misshapen larval stage of our mental health difficulty. Because we are often expecting not to have our needs met it stops us from actually thinking about what the problem might be in enough detail.

This can prevent us from doing the most vital thing we can do in thinking about technology and mental health: it prevents us from actually formulating problems that people might solve.

There’s a way in which the world of being in mental health need is like the experiences of Josef K in Franz Kafka’s The Trial.  In the novel Josef learns that he is to stand trial for something he which he is not aware he has done.  Kafkaesque is often used to describe the baffling wheels within wheels of bureaucracy, something not unfamiliar to many of us who have lived with mental health  difficulties.

But there is something even more relevant than that for us in Josef’s experiences.  As Josef tries to make sense of the various confusing and perplexing orders and guidance he is given he finds out something: he finds out that, having travelled through most elements of the arcane and perplexing legal system, that he is the one that understands it most.  None of the individual cogs in the machine know anything beyond the tiny area illuminated by the the role they play in it.  The machine is so big and so complex that no one Josef meets even understands the shape of it or what its overall purpose is.  It’s him that makes things fit together.  He ends up with the greatest understanding of what’s going on, because he has to live through all of its different elements.

And that’s where people with mental health difficulties are: we’re the people that see the most of processes because we have to.  We travel through each layer of the ways that society responds to mental health difficulty and we see them all.  No one profession sees all of the ways in which being in mental health need affects your life.

It’s like we’re testing the world to see how friendly it is for people who experience mental health difficulty and mental distress by just moving through it. If there is any group of people who are the memory of mental health, it’s us.  But at the moment we remain damned data.  We remain as anecdotes and afterthoughts while the real, proper world of professional mental health continues around us, occasionally consulting us.

So we need to take the initiative: we need to work out together what our problems are. People who build software and work with technology are engineers.  Engineers love solving problems.  That’s what engineers are for.  You set them a problem and they try to solve it.

To date, a lot of the work in mental health and digital technology has been about solving medical problems.  The pipeline has been from medical research, to developer, to end user.  This has meant that the prism through which mental health tech has been viewed has been a one defined by clinicians and medical researchers.  Us civilians have just been the passive recipients even though we’re the people who are meant to be benefiting.  This however, is like when your Mam goes to buy a coat for you.  Yes, you will get a coat from the interaction; but you can be damn sure that it’ll either a) get you beat up on the way to school or b) look absolutely ridiculous when you pair it with some strappy shoes and a new dress. Or c) If you’re me, both.

The assumption there is that lots and lots of statistical knowledge will translate into a great app or service that works for people.  And it doesn’t.  You can’t design great things from abstracts.  You design great things from understanding the problem that people have and the things they expect and the way that they live their lives.

You don’t need to be able to make an app or a website yourself to come up with a really good problem that someone should solve.  People do that for a living; you just need to help them to know where to direct their efforts.  In fact, that’s why digital technology is our best bet for better mental health because we already know a lot about mental health. If we live with mental health difficulties, we know lots about our lives.  And other people know a lot about tech and also make a lot of money out of getting it right.  So, we’re halfway there.  The direction of travel is that there will be more breakthroughs and research in digital technology each year, which means if we carve out a space for mental health in that we will reap the benefits of a direction of innovation that is already unfolding.

In fact, the formula I would use for thinking about digital technology and innovation is:

Knowing what kinds of cool stuff technology can do + thinking about small, well defined problems = ideas for possible digital solutions.  

 Once you looking at tech for possibilities and you start looking at life for problems you’ll find yourself developing the habit of playing with ideas for new solutions or finding ways that existing tech might be applied to problems you know people have.  Congratulations! You’re now playing the possible futures game.  Welcome futurist!  Achievement unlocked.

Looking toward digital in mental health doesn’t need to be about massive transformation; it just has be about solving a particular problem and solving it well.  If we spend our time with people, people we care about, we will see problems without solutions all of the time.  Looking at digital as a way of solving people’s problems doesn’t have to be massive. 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.

Sometimes the answer is a new thing.  Sometimes the answer is an old thing in a new way or at a new time or in a new place. Sometimes the answer turns out not to be digital at all.  There are lots of techniques and structures for creating people driven design that can help you work that out. All of them go from working out with people on a possible problem, to testing whether it really is a problem by checking with people, to working with people to find a solution to that problem that works for them.

I was lucky enough to work on an app called Doc Ready. It grew out of young people’s experiences of going to see the GP and feeling that they weren’t being listened to.  The young people initially said that they would like GPs to have a translation device like something out of Star Trek that would translate young people’s language into language a GP would understand.  That was terrible idea.  But it was  a really great problem.  Traditional approaches to the problem always centred on telling young people what their rights were or teaching them about what GPs did.  But it didn’t help them to feel listened to.  So, Doc Ready did something different. It ended up being a really simple, web based app that helped young people to do one very simple thing: get ready to see the GP for the first time to talk about their mental health.  The way it does that is simple you select a category like ‘feelings’ or ‘thoughts’ or ‘work’ and it gives you some statements you can choose to add to a checklist. Once you’ve seen the kinds of things you could talk about you can also add your own. All the app does is get you to make a list of things you want to tell the GP so that if you get too embarrassed you can just show them the list, or if you find yourself too polite to honestly answer the question ‘so, what can I do for you today’ you have something to give you encouragement.  And that’s all it does.  But we found from evaluating it that it works.  People find it useful. And it solves a problem that people really have.

And we got to that thing that works by making sure we actually had a problem that people really had, and then meeting with them regularly so that they could tell us if the thing we were making actually solved the problem as they experienced it.  We didn’t need to know everything about mental health, or general practice. We just needed to know we were hitting the spot.

Other human problems we have in thinking about digital and mental health are based on our thinking getting stuck in only seeing what there is now as what is possible.

Stuck thinking and fear of change

A problem that happens a lot in development of mental health technology is the creation of things called Skeuomorphs.  I saw a talk by David Mohr where talked about the ways in which we’ve been getting tech in mental health wrong for decades, and he blamed Skeuomorphs amongst other things. Skeuomorphs happen when we recreate an existing thing in a new medium.  The best example are those chandeliers where the electric bulbs are made to look like little flickering candles.  The electric bulbs don’t need to look like little flickering candles, they just do because that’s what we expect.  And we do the same with mental health tech.  We assume that it must be a recreation of something that already exists.  So we get online therapy that lasts for fifty minutes and you have to do sitting at a laptop. Or we get electronic communications between patients and professionals that look exactly like printed letters.  Or sometimes actually are printed letters that someone has scanned.  We get the shape of something confused with its purpose.  Medical professionals can be very susceptible to this in mental health because they embody the shape of things as they are, it’s their very life and professional practice. And that stops them thinking about new ways of doing things.  As David says, the average interaction with a smartphone is 15 seconds, so why do we build mental health apps that need things to be done in 20 minute chunks?  It prevents us actually making things that work for people by being woven into the fabric of their everyday lives.

The final problem is the fear of actually building enabling tools rather than ‘curing’ people.  For other disabled people, it’s pretty well accepted that it is the world designed for people who aren’t disabled that makes a disabled person disabled.  Building buildings without lifts is the problem, not that someone can’t climb stairs.

When it comes to mental health difficulty and technology people have a weird kneejerk reaction against technological aids.  We know that different mental health symptoms or experiences cause different challenges or problems.  Knowing that we could, for example, write a word processor that recognises when your thoughts get jumbled.  It’s possible. It would remove some of the barriers to people who are experiencing certain mental health symptoms at university.

But then you get this response: We can’t mollycoddle people.  If we do things for them they’ll never learn.  If we give people access to aids and assistance they’ll have an unfair advantage over people who have to do it for themselves.  If we do that people will rely on the technology and never get better at something themselves.

And, on such rocks does the enthusiasm for changing the lives of people with mental health difficulties crash into thousands of tiny pieces.

It’s a ridiculous argument, that we need to teach people with difficulties to be better people in future, even if that stops them doing the things in the here and now that would help them.  We are all cyborgs now, to a lesser or greater extent.  We all rely on technology.  There’s a fair chunk of you that wouldn’t be alive now to be listening to this were it not for the fruits of one technology or another. No one suggested I would lose the skill of cross country perambulation by not walking up to Newcastle from Leeds.

How many of you are wearing glasses? How many of you have been in hospital for any reason?  A fair proportion of us would have died before our fifth birthdays without technology.

And, this in some ways, is a fundamental problem: society at large is often uncomfortable with the changes technology might bring for other people apart from themselves.  This includes medical professionals.  This is why we have such an amazing opportunity to begin to make digital technology that solves problems in people’s lives, not the problems of the services that are supposed to help us.

So, whats holding us back is we are scared of change; that we’re not used to working out problems; we aren’t used to playing; people sometimes don’t want tech to happen if it challenges them and there are people who would rather not think about tech at all.

So what cool stuff do we have to play with in thinking what our possible digital mental health future might look like?

Horizons, hype cycles and wild victorian machines

With technology and mental health we are still at the stage of wild victorian patents.  Apps and services are like steam powered hairdressing machines or static electricity powered trouser presses.  We’re in the first explosion of failed applications; a world of solutions to problems people don’t have and crankish nursed obsessions turned into patented devices and labour saving miracles.  I Tunes and the Play store are like the back pages of a victorian penny dreadful; filled with the equivalent of ‘Worthington’s Miraculous patented coal powered back massager!  A boon for housewives!  A bounty for busy men! A tonic to the body and the mind!  See tension just disappear before its magnificent steam powered touch!’

And this is just as it should be right now, because really no one has a bloody clue what they’re doing, because the future is coming into being.  It’s the unfolding present.  It’s not fixed.

New technologies are appearing more rapidly than ever before, and it’s up to us to see how they might be applied to problems that we face.

Each year information technology research and advisory company Gartner Inc. publishes The Hype Cycle for Emerging Technologies, where they track where various technologies are in their cycle of of maturity.

The cycle looks like a rollercoaster beginning with a steep climb that leads up from the Innovation Trigger to the Peak of Inflated Expectations.  Technologies here are in the ‘everyone throwing investment at them’ stage.  Then, just like a rollercoaster they speed down into the ‘Trough of Disillusionment’ which is when everyone realises that no matter how cool they seemed no one quite think of a reason for anyone to actually buy and use them.  They then climb slowly up the ‘Slope of Enlightenment’ where people begin to see what the technologies might actually be used or sold for and then finally pass out of the cycle into the ‘Plateau of Productivity’ when people can consistently see the point of them and are prepared to pay money for them.  The cycle also estimates the time in years each technology is away from mainstream adoption.  In the 2016 on the way up were things like Connected Home, Smart Robots and Virtual Personal Assistants.  On the way down were Autonomous vehicles and augmented reality and climbing the slope of enlightenment was virtual reality.

The Hype Cycle shows that the gap between initial promise and things actually being used by lots of people can be large. Touch screens were in the Trough of Disillusionment for about twenty years until Iphone and Ipad made them things that people understood that they wanted.  That’s why it’s great that there is so much weird and strange tech about, because that’s where the seed of possible futures are.

At the beginning of 2016, independent health charity thinktank The King’s Fund published an article listing eight digital technologies that they feel will revolutionise health and care. The authors Cosima Gretton and Matthew Honeyman divide the article between technologies that are “on the horizon” and those “already in our pockets, our local surgeries and hospitals.”  The list included such possibly dystopian science fiction stuff as tablets that tell professionals when they’ve been swallowed; and possibly more benign stuff like digitally controlled implants for releasing medication on command from an implant and cheaper, quicker genome sequencing to better understand how different people might react to different medications.

Number one on their list, though, is The smartphone.  One of these little beauties.  See, it isn’t just me that thinks they’re an amazing thing.  The smartphone is ultimately a tiny powerful computer that is very, very good at sending and receiving data and interfacing with other things.  It’s a basic platform that things can sit upon, can be coordinated by and interface with.  It also makes and receives phone calls, sometimes.  In the main, though, the smartphone is an amazing thing for health because, unlike just about every other health intervention, we love our phones, we value them, look after them, carry them around and pay attention to them without even being asked.  The smartphone, as a portable computer can be the springboard for lots of other things which is good news for our future.

Other entries on their list included:

Something they call ‘At-home portable diagnostics’, the use of particular bits of kit either on their own or in conjunction with other devices like smartphones to provide diagnostics, reading or measurements and help professionals and patients to interpret the results.  A familiar example of this will be things like blood glucose monitors for diabetes.

The authors also included smart assistive technologies in this category.  Lots of people use devices and apps to help them to do things they want or need to do.  With addition of sensors and ways of communicating the data they produce; these things from adapted cutlery to walking sticks can track how they’re used over time and hopefully feed back lots of useful information about what they’re place in the lives of their users tells us about their user is doing.   Though, in this case, it’s not always clear whether people will want their walking stick grassing them up to their medical professional for not going for a walk or their inhaler telling their doctor when they’ve had a cheeky fag.

Also on the King’s Fund list were digital therapeutics.  These are health or social care interventions delivered wholly or mostly on computers, tablets or smartphones.  Mental health is rife with these interventions.  Everyone is trying to crack the model for delivering evidence based psychological therapies at scale using digital devices.  To my mind no one has quite managed it yet.

They also included machine learning.  If you’ve ever used the google search engine you’ll have noticed that over the last few years it’s gotten better at guessing what it is that you’re searching for or what you’re asking it to do.  This is because google is learning from the inputs of people who use it.  Machine learning is about programs that are set-up to process data and to find things in that data they haven’t been specifically asked to discover.

Machine learning means that programs used to recognise things can begin to spot new patterns not obvious to human observers or to make suggestions about new things that it is shown based on previous things it has seen.  There’s lots of machine learning stuff around at the minute.  If any of you use google photos you’ll know that when you upload all of your snaps you can use google photos to search amongst the images using words like ‘cat’ or ‘party’ or ‘house’, even if you’ve not labelled any of the photos.  Google photos just guesses what’s in the photos based on other photos that it’s seen in the past. The implication is that if we have programs that look at data for patterns we’ll end up with programs that can make guesses when exposed to new data.

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.

Gretton and Honeyman also include connected communities as a big health and care impact.  Given that social media and apps and services with social functions can now bring us together.

If we combine Gretton and Honeyman’s list of at home portable diagnostics, digital therapeutics, machine learning and connected communities and the Smartphone what you end up with is the potential for digital technology to fill in many of spaces where healthcare finds it difficult to reach, especially focusing on the bits of people’s lives which don’t take place in hospital or the consulting room.

Other things that I’ve seen recently which were cool were a project using virtual reality to help people who voices speak back to their persecutory voices, an app that used machine learning to recognise facial expression to help doctors tell the difference between kids with ADHD and autistic kids, a project using technology like Amazon Alexa to support people experiencing hallucinations, jumbled thinking and depression at home and Paro the robot seal which responds to touch and  voice and eye contact and was just so cute I wanted to steal it.

Diversity and outside pressure: the war on tech bros

So, all this tech is amazing and the future is going to be saved? Well, not quite.  Remember I mentioned that there are ways that tech discriminates against us, people with mental health difficulties?  Well it does.  Tech discriminates against anyone it doesn’t think is important. Tech follows the money.  It looks to solve problems where it sees markets. Things climb out of the Trough of Disillusionment when people find markets for them, and at the moment you and me if we have mental health difficulties aren’t seen as a big enough market.

So there are two things we have to be thinking about: diversity and external pressure.

Digital tech is still the preserve of tech bros, and tech bros don’t have the same problems you or I do.  They work in tech, they have access to money, they tend to be healthy. Not all of course, there’s strong thread of mental health difficulty runs through tech but often big tech choses not to care.  Just as it doesn’t always seem to care about racism, or sexism or harassing members of the press.  But the tech bros either solve the problems tech bros like them have, like quicker pizza delivery or not wanting to do laundry or they messianically decide they no best and try to solve a social problem that they neither understand properly nor have experienced.  They constantly ask ‘could we?’ and it’s up to us to push back and say ‘should we?’

That’s why we need to get as many non tech bros into tech as possible to make sure that tech bros don’t just make a world for tech bros.  This we do by taking ourselves and our identities and our problems into those spaces.  We can also do it from outside.  Things often don’t change without external competition or pressure.  It’s up to us to be advocates for better mental health tech, more diverse mental health tech, it up to us to start pushing possible and preferred futures forwards.  The main reason things do not change in mental health is because the voice for change is quiet.  We demand a better future.

The best voices on our tech futures come from people who aren’t tech bros. Go read Gabriella Coleman on hackers and anonymous. Go read Sarah Lacy at Pando on Silicon Valley. Go read danah boyd on social media.

Not paying attention to digital technology doesn’t mean it won’t happen.  It just means that the digital technology in mental health will be built by people who understand the people sized problems of mental health less than we do.  That’s why we need to stay at the table, get our head around the possibilities and the things people need and influence what happens.

The Angel of History and facing the future

So, I’ve explored a bit about technology, what might be coming up in mental health and what’s around now, how we might think about it and what might get in the way of it happening.  And I’ve set out where we might take our place in making it happen but all of this is based on a promise of the future; of finding ways now to make sure that the most probable, that things will continue to get worse, won’t happen.  But how do we keep ourselves going into that future?  How do we find the strength to turn around and face it?

Writing about a painting by Paul Klee, Walter Benjamin talks about the angel of history, wings outspread, being blown into the future while forever facing backwards:

“His face is turned toward the past. Where we perceive a chain of events, he sees one single catastrophe which keeps piling wreckage upon wreckage and hurls it in front of his feet. The angel would like to stay, awaken the dead, and make whole what has been smashed. But a storm is blowing from Paradise; it has got caught in his wings with such violence that the angel can no longer close them. This storm irresistibly propels him into the future to which his back is turned, while the pile of debris before him grows skyward. This storm is what we call progress.”

That’s what we often are when we are talking and thinking about technology and change; we feel that we can only see what’s lost, what came before and that we can’t even turn to face what might come next because instead of knowing where we’ve been and being certain, we’ll be carried away into something where we’ll be insecure, at risk of being wrong.  The debate about technology and mental health often focuses on what might be lost rather than what might find.

Technology has helped us find each other.  Technology has helped us to understand who we are.  Technology has helped us to learn more and see more.  In my case it’s helped me to be more.  People are facing the wrong way.

But, more than that, often we find ourselves facing backwards at our own pasts when we think about our mental health, unable to see a way to the future.  Like the angel of history we just see the wreckage of our own past mistakes stopping us travelling back to when everything was OK, before we messed up, before our heads fell to bits.

Just 

Last year I wrote a piece for a mental health zine, an open letter to anyone growing up mental.  I’m old now, I’ve been doing this being mental thing for years, indulge me.  It’s a little guide to finding a way of facing the future when you feel like the future has been erased and when you feel that never mind a world where technology makes life with mental health difficulty better.  It’s called ‘Just’.

“I’m lucky. The time I spent very ill wasn’t amazingly long. The rooms full of rubbish and rotting food and unwashed clothes and ribs like a clenched fist under my pale skin did not last for years. The terror and the loss and ache in my chest and the days and days spent in bed, trapped in the smell of myself, were not infinite. The scars are not too numerous and, in the end, never getting a degree hasn’t mattered too much. I found people and I found help. And then I found different people and different help. I’m still finding people and still finding help.

“I was 23 when I first received the diagnosis of bipolar II. Like me, you’ll spend most of your life looking for a name to explain what you’re feeling; what you’re experiencing and even longer trying to escape from it once it’s been named. You’ll look at other people as if you were on a ship pulling out into dark rumbling sea surrounded by mist. You’ll fall in love with the romantic image of yourself; lonely and slowly waving at everyone else happy on the shore. As a teen you’ll find it hard to know if you’re unwell or weird or angry or fed up. Other people will find it hard to tell, too.

“And there’ll be shame and embarrassment. At things you didn’t do and things you did. At times you’ll feel so heavy with horror at your own actions you’ll want to fall into the heart of a star or burrow deep into the mouldy; wormy earth. There’ll be times when your thoughts aren’t your own; where what you see and feel isn’t what others see and feel. And you’ll be terrified.

“There’ll always be people who are having far more upsetting experiences than you and people who are having problems that cause them less trouble than yours do. People will tell you that but it doesn’t matter: your life is your life.

“You’ll be tricked into thinking other people have it sorted; that you are just like them but gone wrong, like a plant growing the wrong way or a cake come out the oven the wrong shape. In reality; it’ll probably take you longer than them to find out what the right path is for you because you’ll be forced down paths they’d never choose to travel. Some of you will find out you’re gay or bi or something else. Some of you will find out you’re straight. Along the way you’ll make friends and you’ll lose friends. Some of you will lose your religion and some of you will find it. There’ll be births and deaths and dramas. Some of you will end a different gender to where other people thought you started. There’ll be times where you desperately hide what’s going on in your head and other times where you’ll be desperate to let it out and it won’t come. There’ll be other times when you’ll think you have it all under control while to everyone around you it’ll be as obvious as clown make up or an extra limb.

“You’ll spend years looking for ‘it’: that intangible sense that you are allowed to be who you are and that there is a space in the universe for you. Some of you will find it in the eyes of your first child or in a kiss behind your ear from your lover. You might find it in contemplation of God or in the dirtiest joke in the world. It’ll hit you one day slipping to the corner shop in your pyjamas for fags and a paper; on a monotonous grey motorway drive; answering a text from a friend; shrieking in ecstasy at a sex party in a European suburb. It might be in work, or it might be in everything but work. One day; maybe just for a minute you’ll feel ‘it’s OK to be me; it’s OK to be who I am’. The feeling will pass, other less existential concerns will crowd in, but you’ll remember it: the feeling of no longer beginning with an apology.

“I’m 39 now. I still need a whole mess of help. I still fuck up. You’ll still fuck up, too. But you’ll get better. Stuff might never go away; but you’ll get better at living through it; living around it; finding people to help you get through.

“Eventually you’ll find some way of living with being you in all of your terrible, horrible, gorgeous, glory and you’ll be able to whisper to your past self: ‘See, I told you you’d make it. Just.’’

So this is what we must do, to help make the future we need.  We first must believe that there is one and that we can turn to face it.  We need to see that there is a future with us still in it. We need to look at the possible futures, explore them, try things out.  We need to work out where we want to get to, where we want to be.  And then we have to start taking action, taking risks, turning from accepting where we are and who we are and finding what we can do to make the future we need happen.

We need to make sure that this digital future for mental health is not made by people who don’t care about us.

Sometimes that’ll be about doing; sometimes it’ll be about speaking ourselves; sometimes that’ll be about helping to make situations where others can make and do.

I’ve only just scratched the surface today.  Technology isn’t going to go away.  And neither is mental ill health and distress.  We need this future, a better future, and we need to begin work on envisaging it now.  Because the world is full of people who want to make a worse one.

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

 

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“The future of #mentalhealth is as yet unwritten”: The Marion Beeforth Memorial Lectures 2017

The following is the text of The Marion Beeforth Memorial Lecture ‘The future of mental health is as yet unwritten’ delivered by Mark Brown to the 18th Annual Carer User Education Mental Health Conference on 5th April 2017 at The University of Brighton Faculty of Health and Social Sciences.

I’ve been doing mental health stuff for over a decade.  I started off by inventing a mental health magazine written by people with mental health difficulties, for people with mental health difficulties.  It was called One in Four. We did it for seven years.  It nearly killed us.  Some people liked it.  Some people didn’t.  From there I ended up doing lots of different mental health related things and I got to see a lot of what happens in mental health.

So, I have a confession to make: I want to believe in the future for mental health.  And that’s what I want to talk to you about today.  What makes the future in mental health happen?  Who gets to decide?  What might we expect?

We are always present as the future happens.  We just don’t notice it.  It’s happening now.  By the time I finish this speech the world will be different in millions and millions of ways to when I began.  In mental health we can often be fooled into thinking that things have always been this way and will always be this way in future.

The mental health systems we have now are not the same as they were twenty years ago.  They’re not the same as they will be in twenty years.  Things change.  Often things that we thought would turn out one way turn out another way.  Mental health is not outside of economics or politics or outside of broader social change.  Mental health, as an area of activity, is about people and their lives.  And people are impossible to divorce from the times they live in.  What for one generation seems like a liberation might seem for the next a new form of oppression – ‘It was meant to be great but it’s horrible’.

Over the course of this lecture I’m going to to look at our present, then at our possible futures and then then have a stab at working out how we might start to build the beginnings of some preferable ones.

I came to be doing mental health stuff because of my own experience of mental health difficulties.  There was a time when I didn’t think I had a future.  There are times where I still don’t.  Living a life with mental health difficulty can rob us of our sense of the future; reduce to living from moment to agonising moment.

So that’s why I think the future is so important.  To live in a big long now and to accept that nothing will ever be better is a kind of exquisite torture.

Levels of illness and distress are rising while all we have is the same old suggestions and the same diminishing pool of ideas. There isn’t a past to return to for mental health.  Things were not better in the old days.  We have to face the future.

The lack of attention paid to mental health has given me a permanent sore in the side of mouth where I bite my cheek in frustration.  It feels like making the lives of people with mental health difficulties better is as much of a utopian dream as fully automated luxury communism or holidaying on Neptune.

Often experiencing mental health difficulties saps our hope, hollows our bones, makes everything seem impossible and insurmountable.  Like rising damp or mildew, this lassitude afflicts our institutions and saps their will to make things better.  Nothing will change, we just have to stop things getting worse.  We’re losing the battle for a mental health future that we can make and influence.

In mental health we can’t see a line to the future. All we see are long days of struggle and even longer nights of doubt and terror where everything is like pushing a rock up a mountain.

The hardship and suffering of living with mental health difficulty can erase any vision of a better life or a better world.  Our mental health services seem to constantly teeter on the brink of collapse; surviving from month to month like a family trying to make ends meet, stretching out the final pounds in the bank at the end of the month in tight-lipped desperation.

The international symbol for improving the lives of people with mental health difficulties might as well be a shrug and a ‘dunno’.  Many of the breakthroughs made in medication, oversold as they might have been, are already decades old.  There are few new approaches on the immediate horizon because no one funds research and new thinking.  What does exist is done on a shoestring.

People with a diagnosis of schizophrenia run the risk of dying 20 years earlier than the average British person without a diagnosis of schizophrenia and we don’t know what to do about it.

Psychological problems during childhood can lead to 25% lower earnings by age 50.  Being unwell young can have an impact on the rest of your life and we don’t know what to do about that either.

So why doesn’t it seem like a crisis? Mental illness and mental health difficulty are glacial apocalypses.  Few people die immediately; societies don’t collapse.  There’s never one dramatic moment where society looks around itself and says ‘We never thought it would get this bad. Now’s the time to sort things out.’

The future is slow in mental health because, when it comes to it, people don’t put their money up. There’s always something more pressing, more important to spend it on. Every year that we neglect spending on mental health is another year we waste.  We don’t know where the answers to some of the challenges we face every day with our mental health difficulties might be found; but without the funding of a broad range of research, exploration and doing things they’ll remain forever hidden.

So how might we think about the future?  How might we begin to write it?

Futurists or futurologists are people who have the job of making guesses about what the future might be like.  They usually do this by studying the present and trying to discern which way things are going.  I’m not a futurist, but my time spent doing mental health stuff has given me the opportunity to look pretty hard at the present world and the way it does or doesn’t help people have the lives that they should reasonably expect.

Futurists often use a relatively simple way of trying to understand what the future might hold so they can make better guesses.  They deal in three kinds of futures: probable, possible and preferable.

Probable futures

Probable futures are the futures that seem likely to happen if nothing major changes from now, they’re about extrapolating from present events.  They’re the futures that are like now, but morer.  In mental health, those futures don’t look very rosy.

I was recently speaking at an event about mental health and digital technology.  I told the audience:

“We are in the middle of the biggest roll back of public spending in generations.  In the form of brexit we’re embarking on the biggest experiment in leaping into an economic and geopolitical unknown that our country has seen in at least a lifetime.

“In mental health we can often assume that the world we see around us will always look much the same as it does.  That institutions like this one we’re sitting in will always be here.  That there will always be an NHS.  Always be social care. Always be human rights.  Always be helplines.  Always be homes and jobs and opportunities.  I think right now we can assume no such thing.

“This might sound alarmist, but in mental health we have always been too complacent, too cautious and too ready to accept that things will turn out all right contrary to what we know and we see every day. Life for people with severe and enduring mental health difficulties has been getting worse.

“That is what makes our job in mental health all the more important and desperate…  In much of the adult mental health world our possibilities are plateauing, either because we have gotten everything we can out of a particular technique, idea, practice or treatment; or because public and political will to provide the resources to fully use something to change people’s lives has flatlined.  There is nothing traditional on the horizon that will save us from failing people with mental health difficulties in worse and more painful ways in future than we are today.”

So, in England at least, we are looking at a probable future where there is less funding for the NHS, less funding for local authorities, a possible recession on the horizon and a continued squeeze upon the Welfare State and the benefits to which people are entitled.  More broadly, we’re looking at what might be a period of new instability.  We might think that things won’t change overnight, but sometimes things do.  Brexit, Trump, broader geopolitics, climate change.  Generally it’s easier to see what might turn out badly when you’re already seeing it turn out badly.  The probable future in mental health is that things will be a bit like they are now, but probably a bit worse.  There may be rays of sunshine, a windfall here, an unexpected win there, but generally speaking the direction that we’re going is that for people with severe and enduring mental health difficulties life has a chance of getting a bit worse.

It’s not all doom and gloom though.  We find ourselves at an interesting time in relations to public and governmental attitudes toward mental health.  Nearly a decade of concerted work, much of it funded by the coalition government and beyond through national campaigns like Time to Change, has driven mental health up the agenda as a social concern. The message that people with mental health difficulties should not be discriminated against has stuck.

This gap between public goodwill and detailed knowledge makes mental health the perfect area for a politician who wishes to be seen to be doing unequivocal good. People with mental health difficulties are the new innocent and untainted victims. Or at least the right sort of people with mental health difficulties are. Where once we may have judged the goodness of our society by our behaviour toward recent migrants or to those with whom we did not share political or religious ideas, now in this age of polarisation it has been harder to find victims to help that do not tread on the political sensibilities of one regressive group or another. At the moment, people with mental health difficulties are those people, sort of.

Once the go-to group for governments wishing to earn humanity points was people with cancer; but it’s difficult to make policy pledges about cancer without it costing the Treasury a lot of money. Mental health, on the other hand, is often embarrassingly grateful for even the smallest of crumbs from the top table.

The idealised vision of people with mental health difficulties; quiet, tragic figures wilting for want of a course of CBT or a mental health first aid course in their school has created a kind of victorian urchin analogue; a group of people you can offer a tiny sliver of comfort to and then bask in the glow of their ‘god bless you sir’’s; convinced in your heart that you are both caring and kind.

Conservative social ideas have often been uncomfortable about disruptive or ungrateful beneficiaries. While those who are born with disabilities, or who are unwell from childhood often win the hearts of conservative policy makers; those who acquire their challenges later in life are often considered to be more suspect; somehow less pure in their neediness. Adults with severe mental health difficulties are often people who have had and, currently have, complicated lives where they are not so obviously victims. This often means that they are treated with a lack of care, subject to control rather than nurturance and made to carry with them a sense that somehow society does not know how to fit them (us) in.

But, the suggestion is that this interest in mental health will remain on the agenda for at least the immediate future, though whether it will translate in genuine change is another question.  To the general public not immersed to any great degree in the detail of what kind of things might actually be good or needed by people with mental health difficulties an extra anything for mental health is seen as a revelatory step forwards.  What isn’t happening so much is people without mental health difficulties actually listening to people who do about what they (we) want to happen.

And that’s where we come in, though it might not be something that comes naturally to us.

Possible futures

Our second kind of future is the possible future.  Possible futures are the kind of futures you explore by being playful.  Sometimes they’re explored through stories, or films, or art or imagination.  They’re the futures where we look at how bad, how good, how weird the future might be.  They’re the versions of the future where we explore our desires or look at how one particular thing might change everything.  It’s the jetpacks and flying cars future, if you like.  The future that we try on to see how it makes us feel.  Possible futures are where we try on our ‘what-ifs’ for size.

I went to the Beyond Bedlam exhibition at the Wellcome Collection in London last year.  It told, in some detail, the story of the old Bethlem hospital and by extension a sort of history of the treatment of mental health in England.  It tried to be very fair, to stress that people with mental health difficulties are, you know, people, but it couldn’t quite escape from telling the story of mental health through the institutions and services we build to provide treatment rather than through the lives of people..  All the way through I was wondering:  Are there other stories we could tell about the history of mental ill-health and mental distress? Of course there are. But what might the organising principle be? What would happen if we removed psychiatric treatment from being the sun at the centre of the astrolabe of discussion? Would all of the different moons and planets of ideas and experiences fly off in eccentric spirals and loops, a terrible disordered mess? Or would we find new ways to organise the story or new stories to tell?

This is where our thinking about mental health in general gets stuck, too.  We end up assuming that the existing mental health services that we see are like a kind of unchanging, unshifting map where nothing will ever change and nothing will ever move.  This means we can get trapped in the process of envisaging the future as being much like now but where everything works.  We get stuck in the probable future.  What we need to be able to do is roam further in our thinking, to do more exploring and to stop ourselves from automatically limiting ourselves to what looks like now.

Mental health isn’t just about mental health services. As people with mental health difficulties we know that we carry our difficulties with us, that everything that touches us interacts with those difficulties.  Services might be nine to five, but we’re us 24/7, regardless of what we’re doing

A few years ago I was at an event with a number of mental health folks from across the world looking at what the future for mental health might be.  I got all excited and started to throw out all manner of weird ideas like ‘what would happen if we removed referral criteria for mental health services?  What if we put a use by date on mental health services so that every five years we reviewed them to see  if they were still doing what they were supposed to and if they weren’t we closed them down?  How will we provide mental health services in a world where people move around more, possibly from country to country?  How will we provide mental health services for entire communities that have been traumatised by war or discrimination or violence?’

What was interesting was the people most directly involved in running and managing existing services found it most difficult to play with these ideas, these possible futures.  They were like ‘nope, no, that wouldn’t work, that’s impossible’.  It was as if they were so good at managing the present they couldn’t even feel comfortable playing with the possible future.  They just couldn’t play.

And play is what it’s all about.  I do lot of work these days around digital technology like apps and devices and mental health.  I mainly got into that because it felt like the area where there was the most room for play and for trying out new things.  It felt like an area where it was easier to look at possible futures because it felt new.

Digital technologies are one of the areas where there are new frontiers to be explored.  Digital technology creates hybrids: it takes what we know in one area and finds new ways of doing it.  Technology as helper, not as threat.  As such, digital technology is one of our best bets for better mental health because we already know a lot about mental health. And other people know a lot about tech and also make a lot of money out of getting it right.  So, we’re halfway there.  The direction of travel is that there will be more breakthroughs and research in digital technology each year, which means if we carve out a space for mental health in that we will reap the benefits of a direction of innovation that is already unfolding.

People with mental health difficulties and people who support us and provide us services are often very afraid of new technology, fearing that it will be a new way for things to be done to us rather than done for us.  It’s a reasonable fear, given how much historically has been done to us rather than for us without any digital technology being involved at all.

In any sort of consideration of a possible future you are always balancing the questions of ‘could we do it now or in the future?’ with ‘should we do it now or in the future?’  This is why it important to keep your eyes open to innovations and to weigh them up in your head:  What would it be like if that happened?  Would it be good or bad for us? Would it be desirable?  What would we gain and what would we lose?’

There’s some great examples of this.  People have been working on meds that know if they’ve been taken or not.  They have a little microchip that can tell whether the medication has been swallowed.  That might be awesome if you really need reminding, but could be terrible if it was used to check up on you say, to make sure that you were taking your meds.  What if your employer got that information?  What if your benefits depended on you taking your meds? It could be a very heaven or a merry hell.

Another example might be creating very tailored medications.  It’s theoretically possible to monitor using a smartphone exactly what kinds of effects a medication is having on you in real time.  That could be fed back and you could put together a dosage is that is tailored specifically to you.

We could develop ways we could pre-agree that you might need to stay somewhere safe for a few days if you need.  Somewhere that isn’t hospital, somewhere you could just book yourself into if you need to without having to get to crisis point.

We could if we wanted to each become our own little data mine, choosing to kit ourselves out with smartphones and various apps and sensors and record as much data as we could about our health and activities,  like how much we sleep or our heart rate and then choose to contribute that to organisations who would use the data to better inform knowledge about the particular challenges we face.  So, instead of researchers trying to test hypothesis about things by involving us in trials, we could be making our own data and then saying ‘ok, make use of this.’

At a more basic level, we could design a benefits system that works better for people with mental health difficulties that makes it easier to move on and off benefits and in and out of work more flexibly.  We could, if we wanted to, lobby for a law that makes sure no person ever slips into poverty because of their mental health difficulties.  We could create specific environments and supports for people with specific needs.  I love that some gig venues are building in quiet spaces to support people with autism, so if they want to they can get away from stuff for a few minutes before going back to the dancefloor or moshpit.  Imagine doing the same kind of designing places in for people with anxiety, or people who hear voices or people who have flashbacks.

As long as we can define a need or desire, we can play with ideas for the future as much as we want.  As long as we think: what do I want the future to be like?

In 2013, The World Health Organisation published a paper called  Investing in mental health: Evidence for action, which they described as examining “potential reasons for apparent contradiction between cherished human values and observed social actions.” What the WHO was interested in was the fact that despite the evidence being there that investing in mental health, governments often don’t do it. They say that they believe in stuff and make all the right noises but when it comes to it, they just don’t stump up the cash. One of the barriers the authors identified to getting more to happen in mental health was “Low expressed demand/advocacy for better services”  What that means is that not enough people expressed strongly the belief that a better world was possible for people with mental health difficulties.

And that’s where all of us come in:  we can do the dreaming, we can do the thinking and trying out of possible futures.  That’s our mission, or duty even: to picture that better world for people with mental health difficulties and to be brave about it.  To think of where we want to get to with imagination.  There’s an old Situationist slogan that goes ‘Be reasonable: demand the impossible’.  In our process of exploring possible futures that’s what we need to be doing so that we can better see the gap between where we are and where we want to be.  And that’s something we have to do as people, not as institutions.

If there’s one thing that my time doing mental health stuff has taught me it’s that people have different needs and people have different desires and that at the moment we aren’t very good at meeting either those needs or those desires very well.  We try to design things that work for the most amount of people but that just means that a lot of us don’t get very much of what we want.  Some of us a desperate for more treatment.  Some of us a desperate to have less.  Some of us really want to have more people to talk to about what’s troubling us and some of us would rather send a text.  Some of us want meds that work and others of us want other things that work instead.  Sometimes it will be mental health services that are the appropriate vehicle for delivering some of our possible futures and other times mental health services would be the absolute worst people to make them happen.

Preferable Futures

So, if we’ve done the imagining, what next? This leaves us the final kind of futures that futurologist deal with: preferable futures.  Preferable futures are the futures that are somewhere between the probable futures and the possible ones.  Preferable futures are the ones that we look at and think ‘that’s where we’re trying to get to’.  Preferable futures are the ones that we try to bring about by making decisions and taking actions now, bending the path of the future further towards where we want the future to be and away from the things we think will happen if we don’t do anything and just let events unfold.  A preferable future is the one you get to by playing through a possible future and playing through the probable one and thinking ‘how do we get closer to what we want to happen, rather than what will happen anyway’.

Preferable futures are the way that we begin the process of making sure that the future doesn’t just happen to us. Because the thing about the future is that it’s going to happen whether we try to opt out of it happening or not.  It’s happening now, so it’s up to us to do that dreaming and thinking and playing and examining and analysing so that we can begin to influence it.  A preferable future is one that you start working towards, or one that you convince other people is worth working towards.

So, look at the probable future, look at the possible futures and then decide on the preferred future and start the process of working out how to get that to happen. Simple.  Or not.

I know I’m making it sound easy, but I actually know it’s really hard, especially when we have experience of mental health difficulties.  As people with mental health difficulties sometimes the hardest thing to do can be to dream of better and to find ways to make it happen.

As people experiencing mental health difficulty and distress we are socialised to be ashamed of our failures and our malfunctions. We internalise our fuck ups, paint the walls inside of our heads with never-drying persecutory graffiti. We do not need police to to tell us what we should do because those cops are stationed eternally within ourselves. Though some of us won’t escape the police outside ourselves either. With mental health we are trained to formulate the enemy as ourselves. Our beautiful, magnificent, terrifying broken selves. We turn into incarnate apologies; walking talking IOUs to society. Damaged goods, we every day feel our distance from the shining path of productivity and growth. Each of us marooned on an island of one; isolated by an ocean of self judgement.

In mental health we have yet to go through the political revolution that Disabled people went through in defining exactly how those without physical impairments made life impossible for those that do. We know that many things are wrong. We know so much in the world does not work well for us yet we still find it difficult to name our enemy and turn our discomforts into demands. The question is not why we are broken, but why no one cares enough to change the things that break us still. To come to a similar moment we must analyse where we are and then we must identify what keeps us there. If the hopes and dreams of people with mental health difficulties are a force, there is an equal and stronger force that pushes against them.

We are trained to see our mental health difficulty as what we take from other people, but never trained to see it in terms of what the indifference of others takes from us, our families, our lives and our communities. We feel embarrassed, guilt flushing our faces at our anger, as if hoping that things could be different is somehow a childish tantrum, like shaking a fist at a thunderstorm or shouting at the sea as it rolls onto the beach.We accept that mental distress is a problem situated within us. We feel that it is adult and mature to make ourselves responsible for our own inability to find our equilibrium. We feel like we must accept the endings, must accept the loss, must accept the never weres and might have beens. But we do not. We should not. If we accept this version of realism we will never conceive of changes big enough to turn into demands; will never conceive of our situation as anything more than personal misfortune. We will actively fight against the possibility of collective change.

We shouldn’t have to make the choice between things being better in the present and things being better in the future. That’s a false choice born from forever being starved of funds and resources: we deserve both. The next breakthrough might come in the most unexpected place or through the funding of research or activity so speculative that its immediate application to day-to-day life seems unclear.

We must fight the view that Mental health difficulty is an individual tragedy; resolved through individual action or inescapable. This is blaming a worn out cog for not sharpening its own teeth, railing against a seed for not sprouting in a soil that is barren; admonishing each individual brick in turn for its failure to prevent the collapse of a house on a cliff as it slides into the sea.

For us to be everything we can be we must learn to demand what we need to be that best version of ourselves. If we experience mental health difficulty we have been dealt a shit hand, sometimes one that runs the risk of erasing our sense of self and agency completely. To overcome yourself you will need additional help, support and understanding from others. It is impossible to untie a knot when you are at its centre. Social organisation is the means by which we extend our lifespans, pool our resources, create collectively what would not be possible in one lifetime with one brain and one body. Instead of extending that social organisation to afford the help and support needed by those experiencing distress, disorientation and mental crisis, collectively our society draws arbitrary lines of convention and practice saying ‘society will go this far in assisting, but no further’. We must begin to ask those who do not experience mental distress: what are you prepared to give up so that your fellow humans might in enjoy the same pleasures you do?

The reality of mental health difficulty is this: if you have a mental health difficulty you are more likely to end up poor. If you have a mental health difficulty you are more likely to end up dead sooner. If you have a mental health difficulty you are more likely to have poor physical health. If you have a mental health difficulty you are more likely to end up estranged from family, to never taste love, to never find a comfortable home. The years spent unwell takes money from your pocket and years from your future. These are the result of social organisation, not of individual illness. These facts result from decisions about the limits to put upon help offered and the amount of resources to be allotted to that help. The amount of help and support offered those experiencing mental distress is not a result of how much people want to help but how much help our dominant way of organising society will tolerate being given to those in need.

It is not our fault that we need different things. Our self respect must be based upon being the best we can be and making it clear that we matter.

I am unlucky with my mental health, but far luckier than many. I have some of what I need and am an able advocate for myself. No person should fall into poverty or live in poverty because of their mental distress. No person should settle for a horrible half life when a life fully lived could be theirs. No one should suffer alone when there could be support and community. It’s up to us to envision a future for mental health that is not limited by the logic of those who would rather we did not inconvenience them. No one should die when they should have thrived. People being nicer will solve nothing if underlying assumptions about the way the world should work remain unchallenged.

We need research. We need exploration. We need doing things.  We need new alliances between people who have desires and dreams and wishes and those who can help make them happen. We need to work out what future we actually want.  We need hope.

We need to find ways that we can dream and scheme together, find ways that we can try stuff out.  Experiment, explore.  Ways that we can work together whether we experience mental health difficulties or we just really want to be an ally and an accomplice in making a better world.

We need to be writing the future of mental health now.

Look around you: without spending on mental health research; without new thinking; without new knowledge this is all we’ll have – a world and treatments that aren’t good enough.

We need to make the future happen for mental health now. Because it’s already too late.

So get out there and start dream and doing and making a future we’d all prefer.

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

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Winter is coming: moral duty in digital mental health #mhqt

The following is the text of a short talk given by Mark Brown as part of the panel discussion ‘Digital Mental Health: Waiting for the Great Leap Forward‘ which took place at The institute of Education, London as part of a series organised by the UCL Division of Psychiatry, The Lancet Psychiatry and the National Elf Service.

We are in the middle of the biggest roll back of public spending in generations.  In the form of brexit we’re embarking on the biggest experiment in leaping into an economic and geopolitical unknown that our country has seen in at least a lifetime.

In mental health we can assume that the world we see around us will always look much the same as it does.  That institutions like this one we’re sitting in will always be here.  That there will always be an NHS.  Always be social care. Always be human rights.  Always be helplines.  Always be homes and jobs and opportunities.  I think right now we can assume no such thing.

This might sound alarmist, but in mental health we have always been too complacent, too cautious and too ready to accept that things will turn out all right contrary to what we know and we see every day. Life for people with severe and enduring mental health difficulties has been getting worse.

That is what makes our job in mental health all the more important and desperate.  Right now digital technology is one of the areas of exploration where the promise exceeds the probability in mental health.  In much of the rest of the adult mental health world our possibilities are plateauing, either because we have run to the end of possible ways to wrestle anything better outcomes from a discovery or a practice; or because public and political will to provide the resources to fully use something to change people’s lives has flatlined.  There is nothing traditional on the horizon that will save us from failing people with mental health difficulties in worse and more painful ways in future than we are today.

Digital technologies are one of the areas where there are new frontiers to be explored, potentially in ways that avoid existing strictures that prevent more traditional means of helping people from doing more to change people’s lives.  Digital technology creates hybrids: it takes what we know in one area and finds new ways of doing it.  As such, digital technology is our best bet for better mental health because we already know a lot about mental health.  And other people know a lot about tech and also make a lot of money out of getting it right.  So, we’re halfway there.  The direction of travel is that there will be more breakthroughs and research in digital technology each year, which means if we carve out a space for mental health in that we will reap the benefits of a direction of innovation that is already unfolding.

We have the grounding, in theory, to shape technology into something transformative and caring and sustaining for mental health.  We need to get out there and get messy and get building and talking and gossiping and building and breaking in the understanding that a lot of things won’t work on the path to what does.

If you do not let yourself travel close to the edge of your domain of interest you will never see the domains that neighbour it. Safe in the capital city of mental health, where the streets stay familiar and the sound of change hasn’t brought angry voices to the streets and their barricades, you will be able to comfortably assume that nothing will ever change. you will never see the winter is coming.  And it is coming.

In large parts of the world, though not everywhere, we are in the age of ubiquitous computing.  People carry with them the most amazing, powerful tiny computers in the form of smartphones.  We tend, if we are not careful, to see these tiny computers just a vehicles for information or apps but they are much more than that.  They can process information. They can collect data.  They can receive and they can broadcast.  They can overlay one reality with another.  And they can take phone calls, sometimes.  People choose to carry these amazing devices because they love them and because these devices both make sense of their world and make sense in their world.

To play at William Gibson quotes again, ‘the street finds its own uses for technology’.  People are already using digital technology in amazing, nuanced, inventive and shocking ways and we know next to nothing about that in mental health. We do not know how people who experience mental health difficulties and distress actually use technology now.  We occasionally recruit thirty people and ask them if facebook makes them sad.  We occasionally prod some people into a trial of a digital technology that we think they should like. We keep asking the arse-about-face question ‘what is digital technology doing to our mental health?’ when we could be asking ‘what could digital technology be doing FOR our mental health?’

A colleague said to me that when you are developing technology, or indeed anything, in health and social care you are never building on a green field site.  We’re always building on reclaimed brownfield land.  There are always neighbours, always NIMBYs, always hidden deposits of gas and uncharted subterranean catacombs.  Making something new is all barriers.  It needs to be all barriers if you don’t want to kill someone. Or even if you do I suppose, thinking about it.  Regulation and safeguarding is important as the way that innovation is prevented from causing harm.  We need to use that as a positive force, not a negative one.

We have two tasks, should we chose to accept them.  The first is to immerse ourselves in the possibilities of technology, to look at how we make technology happen, how we can marry it with mental health knowledge and mental health need.  The second mission is to actually understand how people use technology now and how they might use it in future and what that means for how we need to make things that work for them.  Right technology, wrong user experience is the same as wrong technology.  Understand people’s interactions with digital technology and you’ll understand how to put a life changing technology in a form that will work for them, not against them.

The TL;DR here is: Things are looking shit in general, and things are looking really shit for people with mental health difficulties, so we have a moral duty to not make sure digital technology isn’t shit too.

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

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In defence of frugal innovation in public sector space #pddigital16

This is the full text of a talk given by Mark Brown at People Drive Digital in Leeds on 28th of November 2016 in support of the motion: This house believes frugal innovation has the potential to create better solutions to citizen challenges than traditionally designed digital technologies

I don’t think the logic of frugal innovation works in quite the same way in spaces where the market is dominated by state providers funded through taxation, but the practices remain true.  I’m going to try and set out the case for frugal innovation in public or social sector spaces.

The basic idea of frugal innovation in product, profit terms is finding ways to tap markets of people that have been excluded from previous thinking: poor people or people without economic or other power.

The logic is basically this: find a way of providing something to lots and lots of people who aren’t rich at a price they can afford; instead of providing something top of the range to a much smaller number of people who can afford it at a much higher price.  This might look like an i-phone (sort of) but it’s actual a knock off android mobile from China that does everything a first generation iphone could, better and for about £80 quid.

So: initially early adopters will prove whether a particular goods or service is viable or desirable and then frugal innovators will come into play, finding a way of taking the essentials of the product to as many people as possible in a way that works for them.

So, make something a bit cheap, a bit dirty and no frills and then you open out something to people who may not ever have been able to access it before.  Frugal innovation in the context of people driving digital is about getting down to ground level and really understanding what does and doesn’t make things happen to people.

Areas like health and social services in the UK are, for most people, not something that they are closed out of due to price coming out of their own pockets.  Thank the goddesses that we invented social security and a welfare state to attempt to provide basic standards of care, support, services and lives.

So it’s not that rich people have access to top of the range health or social care innovations that could trickle down to people who are poorer. It’s that rich people have access to top of the range lives, and that those who do the innovating come from similar circumstances. In this context,  frugal innovation is looking at the ways that tech can rebalance inequalities by by striving for the same outcomes while also being aware that not everyone has an effing perfect life.  We still design health systems for people with stable jobs, stable houses and stable lives.

In countries where people have regularly been excluded from accessing social goods by weaker social protections or a smaller state, the process of opening markets and the process of widening access to social goods is the same time.  For example: If everyone can afford a very cheap car out of their own earnings, the state does not have to concentrate funds on travel networks.

While it’s true that traditional public and charity sector space is very adverse to the idea of markets and customers and segmentation in its rhetoric, in practice it still faces the same challenge: how do we get people to access something in enough numbers that it pays off for us?  If any of you in the room tonight are from these sectors you’ll know what your organisation is trying to do and how it will judge its value.  It’ll be getting something to happen to, for or with someone.  The financial exchange might not be as simple as ‘that’ll be £29.99 please, bish bosh, into the cash register’ but the principle is still the same.  You have to get something to happen which will generate a value for an individual, a family, a community, your organisation and the country and world at large.

Where frugal innovation differs from other approaches is that it starts with the smallest units: people and the problems they have. It asks:  How can you find something little and relatively cheap that will pay back the money and resources spent on it by making the world a better place in even a tiny way?

Health and social care as provided in UK public sector spaces is not taught to see little problems.  It’s taught to see big problems.  It’s taught to think of big systemic changes, incremental changes, glacial changes that will unfold over decades.  It’s taught to think ‘go big or go home’.  The market in public sector tech has always been between large institutions.  On one hand there is academia, where new things are thought up and older things evaluated.  Then there are our large public sector actors like the NHS and the multitude of different organisations that make it up, or local authorities, or mega charities.

What has been lacking, and this is where people as citizens have been shut out of this market, is the actual aligning of what is developed with the actual lives people live.  So, unlike people who weren’t considered because they fell beneath the radar of the people who want to be rich speaking to the people who already are rich, your average punter in the UK in public sector spaces is closed out of defining what the market offers because, in the end, they aren’t needed by the industries that make public sector tech happen.  In the NHS, for example, the NHS is the purchaser and the tech maker is the supplier.  As long as the NHS is happy, then so is the supplier.  And, if it doesn’t quite work for people?  Well, we just blame them for being non-compliant, or expect some other body of person  to step in and make that online form comprehensible or to make sure that they read the insulin levels or similar.  The average punter is in the same position of someone who doesn’t have enough money to take part: no one cares.

In an Article for Forbes India, HARICHANDAN ARAKALI wrote about definitely a taxi service/definately not a taxi service depending on what country you live in Uber:

“going truly local, is far more interesting: it’s as much about getting the tech and the business model right as it is about figuring out the psyche of the people here. Uber is here not just for frugal innovation, but to innovate for the frugal.”

By trying to understand where people are at, it’s possible to align what resources are available with what people most want to happen.

As the most recent Autumn statement has shown, there is bugger-all new money for many areas of social good and the ever increasing spectre of a post-brexit recession is suggesting that things are going to hurt a lot more for a lot longer for both institutions and individuals, families and communities.  Everyone will be rushing to get their massive tech plans signed off before the tide of money goes out even further.  If we have the power to align tech in social sector spaces far more closely by working out how we serve the needs of people excluded from the discussions at the top table, then it’s our duty to do so, even if it means thinking smaller and deeper rather than bigger and loftier thoughts of progress.  If public goods are going to become increasingly more difficult to access; from education to health to social care to even democratic structures themselves, we have to start designing and building things that don’t require a perfect bloody life to access.

If the money is going away for a top table level of big things, then our focus must be many and small ones.

If you currently are sitting pretty with all of your reasearch and roll out money in the bank; leaving speaking to people about what they want and need to an afterthought or a bit of window dressing for presentations and award ceremonies you’ll be fine.

It’s the poor buggers who really need something to be different that’ll be in the crap, closed out of influencing their own lives and outcomes by the very people who claim to help them.

A cheap and dirty world can be a horrible world unless good people make cheap and dirty work for people.  If lots of cheap and dirty can make life better and more livable, none of us should ever go to bed with clean hands.

Ever.

Thank you!

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

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New research beginning into safety in mental health inpatient spaces

Mark Brown explores a newly launched research project exploring safety in mental health inpatient settings

Mental health inpatient wards are supposed to be safe places.  They’re where we find ourselves when we are at our most vulnerable.

The question of safety and who has responsibility for making these spaces as safe as they should be is often an unspoken question in mental health.  This question came into sharp focus last month when patient leader Alison Cameron brought to public attention an incident she witnessed while an inpatient.

Kathryn Berzins, a Research Fellow in the School of Healthcare, and John Baker, Professor of mental health nursing, both at the University of Leeds are beginning a project to bring questions of safety into sharper focus which will involve collecting experiences of receiving, providing and caring for someone receiving inpatient care for their mental health.

Says Berzins: “Safety in mental health care has not really been thought about in much depth. There has been a lot of focus on suicide and homicide, and other things you would expect to see in hospitals like infection control and falls prevention. We certainly don’t know about service user and carer’s priorities for safe mental health care and treatment, or their suggestions which could make services safer.”

Baker says that “safety incidents are recorded in very physical terms, such as ‘did somebody need medical attention as a result of a fall?’” He is keen that we also begin to think about the psychological consequences of being a patient on an inpatient ward: “We think psychological consequences are just as important. My whole career I have believed that service user and carers should have more involvement in the care that is provided. I have seen and heard about countless examples when care or treatment has either exposed people to risk or just not been safe. Often at these times services users and carers are excluded from discussions about how things could have been changed or improved.”

To begin this process, Berzins and Baker are carrying out an initial survey with people with mental health difficulties, those who care for people with mental health difficulties and mental health staff looking at attitudes to safety. Says Berzins: “This is the start of our project looking at safety in mental health services, it is very important to us that service users and careers are involved from the start, tell us what their priorities are and help keep us on track throughout the study. We’re also hoping that collecting people’s opinions will allow us to develop future research studies looking at specific areas of concern in more detail.”

The pair are currently developing a range of studies investigating safety issues for both service users and professionals in mental health care, in both hospital and community settings. Berzins is particularly interested in the use of restrictive practices, service user and carers experiences of care and treatment (particularly that carried out under the Mental Health Act), and criminal behaviour in hospital settings.

Both feel this work is vital in the current climate: “The NHS and Mental Health services in particular seem to be under increasing strain,” says Baker. Enabling services to provide safe and effective care is undoubtedly important. Finding out about the most important priorities now is key to developing this work in the future. Initially we want people to complete the survey, and if they are interested they can become more involved afterwards by taking part in a telephone interview or even becoming a member of a steering group.”

To take the survey here: https://leeds.onlinesurveys.ac.uk/safety-issues-in-mental-health-care-services

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

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Mental Health and Brexit: there is no new normal

Mark Brown (@markoneinfour) tries to collect together some of the questions and worries for mental health as a sector and for those that experience mental health difficulties posed by June 23rd’s EU referendum vote.

On 24th of June 2016, a narrow majority of people in the UK voted to leave the European Union in a national referendum.  As I write this on Sunday afternoon it is not clear exactly what the next immediate steps are for the UK.  It isn’t clear what Bexit as a policy, if indeed it becomes a policy, will mean for mental health as an area of activity and for people with mental health difficulties as a whole.

The first rule of mental health is that it always falls low down in the pile of funding priorities.  Political reality defines whether mental health is a funding priority.  If something else more pressing comes along; mental health falls off the bottom of the list.  And that list in the UK just grew incredibly long.  Whether you are pro-bexit or anti-brexit; it is impossible to deny that the UK has had in the space of 48 hours the greatest single change of political priorities since the beginning of World War II.  As yet, there is little-to-no specific expert opinion about the effect that this change might have upon the lives of people with mental health difficulties, so I’m doing my best to cobble together some thoughts.

The first is that it is unlikely, no matter how hard we hope, that voting for leave will give us an immediate end to austerity.  Benefits, affordable housing and other social protections will not see a rush of funding.  In fact, little will change immediately.

As such, the following aren’t so much predictions as reasons why people might be worried or questions that are currently in need of answers.  The answers will not be forthcoming immediately.

There are three real tracks of reality here.  The first track is everyday experience.  The on the ground reality is that, practically not much has changed since 10pm on Thursday the 23rd of June when the polls closed in the EU referendum.  The buses are still running.  Food is still the same price in the shops.  No part of any government policy or british or scottish law has changed.  If you’d avoided the papers and had a long weekend on the sofa watching Netflix in your pyjamas with your phone off it wouldn’t be immediately apparent that anything much had happened.  We haven’t left the European Union yet.

The second track is what we can predict will happen to government; organisations; bodies; services and circumstances.

The third track is perception and what people believe will happen.  The first manifestation of this is the volatility of financial markets.  Money people don’t like uncertainty; and from the point that the referendum was called in the favour of Leave; the status quo was upended.  Something had changed; even if its practical effects were not yet clear.  Until it’s clear; things will be financially unstable for the country as a whole.  The resignation of Prime Minister David Cameron on the morning of June 25th underlined this: whatever happens next it’ll be different.

If there was anyone waiting for business in mental health to return to normal anytime soon: it won’t.  There isn’t a new normal yet.  

The National Health Service

Whether we like it or not, many of us with mental health difficulties find the NHS is something upon which a degree of our wellbeing is dependent.

At present the leaders of the Leave campaign are desperately backpeddling from the claim that the disputed £350m the UK sends to the EU would be saved and spent on the NHS instead.

Despite the claim featuring prominently in the campaign, including on the side of a massive bus, it’s currently being discussed as a mistake or a misunderstanding.

I’ve not come across (yet) anything on the potential effects on the health services of Wales, Scotland and Northern Ireland but am happy to add if you get in touch in the comments.

The Health Service Journal were quick off the mark in looking at the potential effect of Brexit on NHS in England.  The single biggest risk to the NHS is recession.  If the UK does not successful steer its way through the choppy waters post Brexit, the something will have to go.  The current government has been committed to moving to a budget surplus by 2019-20, which was looking dicey anyway.  Any big drop in tax income would would blow that out of the water further meaning that the NHS will either need to provide less things or people will need to pay more taxes; the taxes option being pretty impossible if there are overall fewer people making enough money in work to pay those taxes.

The shorter term view from the HSJ is that even prior to the leave vote the NHS didn’t have enough money.  On the immediate risk, HSJ quotes Chris Hopson of NHS Providers:  “We would expect there to be a debate among system leaders about whether more needs to be done in 2016-17 to offset the risk that comes from choppier economic times. But our members would argue that they are already doing everything they can and if more money is taken out consequences will inevitably follow in service and staffing levels.”  In other words; the riskier the present seems the more likely it is that NHS providers will cut what they can now to try to keep something in the bank for later.  The instability in government; and potential increased volatility of the House of Commons makes the present seem riskier.

Dave West, writing for HSJ, notes that: “Jennifer Dixon, Health Foundation chief executive, warned that a vacuum of political oversight in coming months – along with the likely departure of patient safety champion Jeremy Hunt from the health brief – meant more risks may be taken with the quality of care.”  NHS England was already facing a new settlement being drawn up from Government, as the NHS had collectively been given a deal where more money has been awarded upfront on the understanding that savings would be made.  Those savings haven’t been made and prior to Brexit, the NHS was worried about having to try to find savings from its staff bill.

The worry is, then, that the NHS will be told to make savings on top of savings.  Given the resignation of David Cameron as PM and the potential for a General Election to be called, it isn’t clear who will be in government beyond October when David Cameron’s successor will have been chosen by his party and what their attitude toward the NHS will be.

A further pressure would be the potential departure of NHS staff from EU countries, as noted by HSJ journalist Shaun Lintern.  This would not only depend on changes to law, but to the also on the extent to which people feel welcome in this country.

Historically, mental health has not fared well in the NHS and it’s probably unlikely that any future leader of the Conservative Party will look so favourably upon mental health, given the possible upheaval in other areas of policy.  Looking forward in 2017, the future is, as yet, unwritten.

Voluntary sector

The voluntary sector, unless it is involved in direct humanitarian crisis, generally needs a degree of stability to flourish.  The voluntary sector in mental health in England and Wales has claimed a number of wins in the last five years such as the funding of national anti-stigma Time to Change and the prominence of mental health in David Cameron’s now dead in the water Life Chances strategy.  The recommendations of the much trumpeted, oft-delayed Mental Health Taskforce The Five Year Forward View on Mental Health,  the first independent mental health strategy headed by the voluntary sector which reported finally in February this year will now probably turn out differently.  The next five years does not now look like it did when the Taskforce began drafting and redrafting.

Given the great potential changes underway, it’s fair to say that the voluntary sector in mental health is going to find it more difficult to get the ear of decisions makers. And more difficult to get people and funders to open their wallets, if indeed those wallets contain anything but pennies.

The voluntary sector as we currently know it is a direct product of the New Labour years between 1997 and 2008.  During those years the voluntary sector grew, in part due to New Labour’s discomfort with being seen to spend too heavily on public services apart from the NHS.  The NHS, in turn, looked toward funding voluntary sector mental health services as an add-on to their core business of treatment.  Similarly, local authorities answered calls from community members for additional social care-ish services and funded some mental health related organisations and services via block grants.

As such, the voluntary sector in mental health grew but remained dependent on public sector money.  The donor base, that is how much money mental health charities can raise from members of the public and companies giving voluntarily, remains low in mental health and is skewed very strongly toward the largest mental health organisations.

Grants were available from a number of grant making bodies and grant funders, with some funds made available from government for particular initiatives or schemes.

From 2008 onward, all of these streams of funds began to constrict.  Not uniformly across the country or across all activities.  The NHS and local authorities began to spend less on the funding of mental health related activities.  Central government began to spend less.  There was a kind of firesale where money was ‘got out of the door’ before it disappeared.

The 2010 general election ushered in a five year period of austerity spending policy.  Money that was once there was no longer there, apt as a mirror of the financial crisis of 2007/2008 where this was literally the overnight reality as markets dipped and debt went toxic.

The voluntary sector in mental health was slow to wake up to this; focusing on keeping its head down and waiting for the money to come back.  This, it seemed, was a policy change, a slowing of a general upward curve in the funds available for mental health-related work.  Soon, business as usual would be resumed.

Except it wasn’t.  The financial crash wiped a lot of money out; including money that charitable funders has invested in stocks, shares and other financial vehicles.  The NHS reorganisation created by the cul de sac of the Health and Social Care Act 2013 and various decisions made about funding to Local Authorities meant that the squeeze continued.  As satellites of the NHS and local authorities, with few avenues open to them smaller mental health charities began to collapse, larger ones tried to reconfigure to deliver what low level services were currently being put out to tender and the largest ones consolidated their positions as service providers.

The events of the last few days have the potential to shake up this situation even further.  The politicians that were available for meetings and launches will probably be otherwise engaged.  It’s not clear whether the opposition Labour party will even have the role of shadow minister for mental health, a role at time of writing occupied by Luciana Berger.

Writing for Civil Society on Friday 24th, David Ainsworth  set out the stark challenge for charitable funding in wake of a full brexit:  “The charity sector receives over £200m a year in grants from the European Union, and it seems unlikely that the UK government – free of an obligation to distribute this money – will continue to hand out this money. Given the lack of enthusiasm in government for grant funding – the minister for civil society himself suggested that grants were “unsustainable” – this money is unlikely to be replaced.”  Whether much of that money is money at risk in mental health I’m not able to establish with what I have to hand; so it may be that this has little direct effect on mental health organisations but may have a large effect on people’s mental health through loss of other services.

Even starker was his warning about the effect of the drop in sterling and the possibility of recession on the money grant making bodies would have available to make grants.  There have not been huge grants to mental health over the last five years; but funders have been there.  Says Ainsworth:  “Each year, charitable foundations make grants of about £2.5bn to the sector – as well as considerably more outside it – and the vast majority of this relies on income from £123bn of investment assets.

“At least, it was £123bn yesterday. The charity sector holds about half its assets in the UK stock market, and has therefore probably lost about £5bn since six o’clock this morning.

“A significant chunk of the money distributed by grant-givers comes from capital appreciation – the fact that shares go up in value faster than the economy as a whole. Unless there is a recovery over the next few months, there will be no capital appreciation to speak of this year, and grant-giving could be heavily affected.”

Who is allowed to provide services has been governed by EU procurement law (or ‘EU red tape’ depending on your preference). Some mental health organisations have increasingly become service providers to the NHS or to Local Authorities, in part due to the lack of available charitable funds or direct donations.  If the UK actually formally exits the EU one potential change an exit might bring is a change in how services are contracted.  Says a sector source: “many mental healthier services are being commissioned and retendered to deliver the ambitions of the Five Year Forward View on Mental Health. These contracts (because of their size) would be under EU procurement rules, which in some areas have prevented smaller, organisations led by lived experiences from being a lead partner in the contract. Leaving the EU might mean that we could diversify the provision within the local health economies. Alternatively a response might be bigger contracts for independent providers (but under domestic competition rules rather than governed by EU procurement). With the removal of state aid rules we could see greater investment by the state to continue support the ailing and underfunded mental health system or alternatively leave its survival to market conditions”

Writing for the voluntary sector as whole, Sir Stuart Etherington of the National Council for Voluntary Organisations said on Friday 24th: “We are just recovering from the previous economic crisis. Further years of economic difficulty would scarcely seem like a change to young people who have known nothing else. But they would mean more years of struggling to fulfil our organisations’ complete potential to do good, more years of seeing people struggle in the face of hardship. We can only hope for skilled and thoughtful leadership in the coming weeks and months in order to avoid the worst of the financial predictions.”

It can only be hoped that the mental health voluntary sector itself will generate such thoughtful leadership at this difficult time.

Social Care

Crossing over to an extent with the story of the NHS and of the voluntary sector, social care is a far more fragmented area which some of us with mental health difficulties are lucky enough from which to still benefit.

Community Care’s Andy McNicoll writing on Friday 24th surveyed the main challenges ahead.  On funding he points to the warnings of the Remain campaign prior to the vote: “During the campaign, chancellor George Osborne said he would have to slash public spending and put up taxes in order to plug a £30bn “black hole” if the UK voted to leave. Speaking alongside his predecessor Alistair Darling, Osborne said £15bn would have to come from cuts. Spending on local government could be reduced by 5% and the ring-fenced NHS budget cut, the pair warned.”

McNicoll also points to the fact that at current estimates over 80,000 people from other EU countries are currently employed in social care, about 6% of the overall workforce.  While nothing legally has yet changed, as with the NHS, it will depend on current and upcoming events as to whether those people feel secure enough on the UK to remain.

The same concerns about funding and political priority remain; especially coming at a point where health and social care are meant to be moving closer to integration across England.

As to where this leaves conversations about personal budgets, access to advocacy and mental health social work is not yet clear.  Funding remains a strong concern in the advent of a further recession.

Given how diverse the activity is that falls under the heading of social care; it’s going to take people much cleverer than me to capture the full range of issues as they relate to both Brexit and mental health.

Research

I’ve not got to hand details of how much of the mental health related research in the UK derives from the EU, but it’s clear that the relations between EU membership and research is more complex than just funds; relating as it does to the ability of researchers to move freely across Europe and to collaborate.  A worry is that UK research organisations will experience a ‘brain drain’ as people leave what may feel like a less hospitable country or that those born in the UK will look to move to EU countries if it looks like the UK will enter more challenging times.

[UPDATE 15.00 28th June: After a bit of asking about, a sector source suggested that the answer to this question is not clear cut.  The second highest contribution after germany from Horizon 2020, the EU Framework Programme for Research and Innovation.  According to the Association of Medical Research Charities the UK: "UK charity-supported researchers received over £260 million in further funding from the European Union, covering disease areas from arthritis to Parkinson’s disease in the period from 1st January 2012 – 31st December 2014."

My source suggests that if the weighting of funding toward mental health for EU funded work follows the pattern in the UK, 6 to 7% of those funds will have been used in mental health related research carried out by charities.  My source also said it'll probably be a while before anyone is quite able to put a figure to the possible loss of funds to mental health-related research.  But as mental health research is chronically underfunded already; it's unlikely that any variety of Brexit will lead to more; especially not in light of the potential effect on charitable funders noted above.]

Change and wellbeing

For some the Leave verdict was a blessed, long hoped for relief. For others it’s been accepted with trepidation and worry.  Those who are happy about the result will be no less immune than those who voted for the alternative. For many people in the UK who were born in other EU countries it has cast a long shadow over their feelings of comfort and confidence about their lives in the UK.  As we work through the potential paths forward from the vote and the implications of various courses of action it becomes clearer and clearer that what this all means is change whether we like it or not and whether we wanted it or not.

People with mental health difficulties are not generally well disposed toward change and uncertainty.

We also know that financial hardship, the experience of racism and that lack of security in our lives tends to exacerbate our mental health difficulties.  We also know that people with mental health difficulties tend to end up experiencing more the effects of wider economic and social changes as we tend to be more vulnerable to changes in public policy, changes in the labour market and changes to the availability of social supports and social protections.

We also know that how people feel about their lives and their futures interacts with mental health in ways too numerous to mention.  For a number of with mental health difficulties the last six years of austerity has felt like a collision between a worsening practical reality and a dimming belief in the future.

We don’t know how the majority of people who experience mental health difficulties voted in the referendum but we do know that a continued perception of chaos and uncertainty will not make people rest more easily in their beds; especially if this perception is backed up by increasing practical results of the referendum decision that do not directly benefit them.

Almost certainly people of other EU nationalities currently living and working in the UK will not be feeling comforted by the result.  Nor will those who worry for the effect of general economic upheaval on services, benefits, jobs.  Also, arguably, those who voted for Brexit may well find that the things they felt they were promised by the campaign are longer in arriving than they hoped.

If there’s one concrete fear that I have for mental health it’s that, despite all of our protestations, mental health will be at the back of the queue for the duration of the settling of the Brexit question.  Something that might take years.

Whatever happens, we need to find ways to keep ‘buggering on’.  This may be easier said than done, especially if there is a vacuum at the top.  We all hope that people from different sides of the vote will be able to pull together within families, communities and other places to get on with life.  At the time of writing this does not appear to be a process that will be led by Westminster; at least not until it actually becomes clear who is actually in control and who isn’t.  Add to this the potential for, hopefully isolated, racist attacks emboldened by the overall turn against the EU and it seems that discord may be the order of the day for at least the immediate future.

Which will do no one’s nerves any good.

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

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Provocation for innovation 3: Frugal innovation – making good stuff happen with eff-all cash

On 14th of April 2016, Mark Brown (@markoneinfour) ran a mental health minihack at Marmalade, the fringe of the Skoll World Forum in Oxford.  In preparation he prepared three provocations to put to attendees for areas where it would be possible to innovate in mental health as actors coming from outside of the established publically funded system of mental health treatment and support.

Attendees were told to apply their knowledge and experience to addressing these presenting issues.

Below is the third of these provocations  ( (The first ‘Payment by Results – outcome measures – getting data – arranging payment’ can be found here and the second ‘In mental health communication is flakey’ can be found here)

Provocation 3: Frugal innovation – making good stuff happen with eff all cash

According the Mental Health Taskforce report published in February 2016:

  • People with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people

  • Nearly two million adults were in contact with specialist mental health and learning disability services at some point in 2014/15

  • Nine out of ten adults with mental health problems are supported in primary care.

  • Of those adults with more severe mental health problems 90 per cent are supported by community services. However, within these services there are very long waits for some of the key interventions

  • Mental health accounts for 23 per cent of NHS activity but NHS spending on secondary mental health services is equivalent to just half of this. Years of low prioritisation have led to Clinical Commissioning Groups (CCGs) underinvesting in mental health services

While many objected to the Conservative Big Society idea; it did represent one answer to the emerging crisis which, depending on your viewpoint, was either caused by or resulted from austerity.  At present there is little investment in mental health research and the available charitable funds for the actual provision of activity to support people with mental health difficulties has dwindled over time.  The crunch on local government funds has also reduced greatly the available funds for mental health.  Big Society suggested that frugal innovation might provide an answer to some of the unmet need in our communities.

Innovation has not been easy for organisations structured with business models developed in an era of public spending expansion.  It’s possible to argue that larger organisations lack the agility and the entrepreneurial skills to be able to develop, prototype and test new ideas. It’s also possible to argue that this is not entirely a bad thing if we are talking about maintaining the welfare of people who are having a variety of challenging experiences and who rely on a consistent and reliable service.  It’s more difficult to argue that the interests of a provider always align with the interests of a consumer when the consumer is a person with mental health difficulties who has funding allotted on their behalf by commissioners but is not a direct ‘consumer’ in the traditional sense.

The problem is that entry into the market is extremely difficult for smaller organisations who need to raise the funds to do before they can build they evidence that they can do.  The bootstrap paradox is strong in mental health.

In a marketplace where funds are dwindling while need is rising, there has been much discussion of ways in which people with mental health difficulties might find solutions to their own problems with little discussion about ways in which that might be made a reality.  As an area there has been much rhetoric but the reality has tended to be tiny amounts of funds mostly inaccessible to the kinds of small autonomous groups that form to solve particular problems.  Government backed initiatives like Community Organisers, the DWP’s Developing Disabled People’s User-Led Organisations Programme and empowerment style organisations such as NHS CItizen have failed to touch much in mental health.

While many have ideas about what might be solved; the question of how such people might be resourced, supported, funded, matched with resources and how they might find some kind of sustainability still remains.

Presenting Problems

What financial devices might support small groups to deliver high quality mental health related services?  How would investment in such groups be made possible, considering the considerable risk?

How might the knowledge gap around innovation, product development, design and management of human and other resources be bridged?  How might innovation activity be focused on unmet need?

How could larger organisation find ways of working with a wider range of people to meet unmet need without requiring large amounts of additional investment?

How can innovation be fostered in low investment; low return areas such as mental health?  How might we make mental health stuff happen when there is f*ck all money?

How might innovation serve the unmet needs of people with mental health difficulties rather than the provider interests of organisations? How might frugal innovation in mental health be supported?

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

 
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