Just what is the point of health professionals in social media? #wgt16

The following is the text of a talk given by Mark Brown at We Get Together 2016 at Salford University on 29th February 2016

I want to share a speech that I first made at NHS Expo in 2014 about social media and public professionals, sharing a stage with our very own Teresa Chinn and Victoria Betton. (The full text of the original speech can be read here.) It was written in an attempt to define and to stake out a role for health professionals in social media in a period where they were running the risk of being shut down and hemmed in overly rigid corporate cultures.  Once I’ve done that I want to bring us up to date a bit with where I think we are now.

At a time when the NHS is experiencing its biggest challenges for at least a generation, I want to talk to you about the way in which social media can help to root the NHS in the fabric of communities. I want to talk to you about the ways that social media creates an opportunity for a whole new generation of ‘public professionals’, professionals doing their jobs while maintaining social media enabled relationships with a whole range of people..

But first I want to take you on a little journey…

It’s Sunday evening. The house is filled with the smell of ironing and leftovers and the sound of grumbling kids and grumbling adults all counting down the hours to Monday morning.  You and the family settle down to watch something comforting and gentle on the television.

It’ll be set in some time between about 1920 and about 1963-ish.  If it isn’t set then it’ll be set in a rural community somewhere as if it were 1920 to 1963-ish.  It’ll feature an affable public servant. It might be a police officer.  Or a doctor.  Or a midwife.  Or a district nurse. Or a coastguard.  They’ll spend each episode doing their job but also being involved in a whole variety of shenanigans.  The message will be they are a valued part of this particular, peculiar community of people.  Occasionally they’ll come to blows with someone from The Ministry or similar, someone who represents the far-distant bureaucracy ‘who don’t understand our local ways’.

What these Sunday night comforts all share is the nostalgic appeal of a world where public services were explicable, knowable and human sized.  It’s the fantasy of the local GP having a few pints in the snug of the local pub or the beat bobby who slurps tea in the local cafe.  It’s a yearning for the days when public services felt like they grew from communities, rather than being distant, complex structures that lurk at the edges of everyday life. It’s the wish to feel like there’s someone who is part of our world that can also help to understand the world of public services.

Social media is in some ways the latest village square or local cafe.  It’s a place where people check in to hear the latest news, catch up with friends, debate, flirt, ferment revolution and/or swap dirty jokes.  In short, it’s a place where people do people stuff.  Social media is where people are.

It’s very easy to underestimate how much of how the NHS works is opaque to the public. It’s like a big castle with high walls.   It’s very easy to underestimate how much of how the NHS works and what the NHS does is opaque to the people actually working for the NHS.

There’s a difference between giving health advice and discussing health issues, just as there is a vast difference between individual treatments and the service which delivers them. The NHS isn’t staffed by robots.  In fact we’re so scared that the NHS might be losing its human touch that we’re talking about training people in compassion and empathy.

So, what’s this got to do with public professionals and social media?

Public professionals talk about their job via social media.  They combine two things: they appear in the public realm talking about their job in way that used to only be possible if a journalist thought you interesting enough to interview. They talk about the pleasures, they talk about the joys, they talk about the difficulties, they talk about the issues that arise from doing it.  They put a human face and a human voice to what otherwise might seem a semi-robotic function.  They help the public to understand the process, the practice and the limitations of healthcare.

Public professionals inform the public of their practice and in turn have their practice informed by the public.  This is the second thing public professionals do: Public professionals talk to each other, they talk to non-professionals, they carry information into areas where it isn’t usually found.  Using social media they get ‘out and about’. Public professionals learn from the blogs, tweets, videos and discussions that they find themselves in and carry this understanding back into their work.  It’s easy to forget just how much taxpayer funded knowledge and wisdom is currently sitting within the staff of the NHS.  It’s awesome but it also ends up hidden from the people who paid for it.  Public professionals jailbreak that knowledge and carry it out into the community via social media.

In social media, information doesn’t just flow outward from providers, it’s a two-way traffic.  People increasingly expect that organisations will speak back to them and listen to them.

It’s hilarious to me that the NHS has a challenge with engagement and involvement.  Public professionals mix with people via social media (and often in real life too): they’re the person you talk to who is also a nurse, or a the person whose blog you read who is also a doctor.  Public professionals are engagers and connectors by nature.  You can’t do social media well without connecting with people.  For people like me, who aren’t in the NHS, public professionals are a point of entry, a way into understanding it better and a guide to navigating the complicated flows of information, misinformation, spin and rumour.

If we trust people to make life or death decisions over others we can trust them to have opinions.  If we’re battling for hearts and minds, which I think we are with the NHS, then public professionals are the best ambassadors there are.

Public professionals are a two-way conduit.  They take information out of its NHS castle and while they’re outside, in the bustling town square of social media they learn, and talk, and listen and they take information back into the castle, too.

And, being part of a social media communities and relationships means public professionals stick around through the good times and the bad times because they’re a person relating to other people.  You can’t be all ‘share our good messages, retweet our opportunities, big us up’ and then lock down your twitter account when a scandal breaks.

Doing social media isn’t a separate job from doing a ‘proper job’. Public professionals fit in blogging, podcasting, tweeting around the rest of their work.  You don’t need to be a social media expert to do social media. You just need to know your subject and just need to be really, really passionate about discussing it.

The rules for being a public professional via social media are really the rules for any healthcare professional: Listen, speak with respect and care, know your subject, don’t talk about the benefits of your work without discussing its limitations, don’t think you know everything, be proud of your job but not blind to its failings and be an advocate for the best of possible worlds by understanding where things are worst.

I’ll just leave you with this:

While social media isn’t the be all and end all of things: The public sector sometimes only gets the urge to engage with people when it wants something.  How do you expect to engage the community, care for the community and be supported by the community if you’re not part of the community? That’s what public professionals do. And that’s why I love ‘em.

So, all you public professionals around the room, bask in the glow of my praise.  That was me making the case for your existence.

Now, more specifically, I want to talk about now.  And what you can do about now.

The three spectres: Cynicism, ignorance and minding your own business

In our national debate about what healthcare is, what it costs and where it should be in future years there are three great spectres haunting the land.

The first terrible ghost is cynicism.  There’s a lot of people who feel disenchanted and disenfranchised.  Patients.  Professionals.  Observers.  Despite stated intentions that healthcare would never again become a political football; we’re living through a period where there is an ever increasing sense of panic, of imminent collapse, a feeling of siege and of mounting horror.  People are losing their trust in public institutions.  Everyone in power is suspect.  Everyone seeking power is suspect.  Everyone questioning power is suspect.  In a social media age; everyone who wants to be is barraged by waves of spin and counter spin. Far from focusing people on what really matters it makes people feel so far from being able to change what really matters that they begin to believe that nothing will ever change.

Good things; things that people on the inside of healthcare believe in; work hard for and which really make a difference become drowned in a sea of political announcements and press releases.  People begin to lose their faith in you; in healthcare professionals and in the possibility of things ever being better.  It’s people like you in this room; people who work in healthcare who really care, who can help to change that.  Not by being relentless cheer leaders or by arguing with every critic and rebutting every accusation of self interest and ‘wasting taxpayers money’, but by being people online.  By showing that far from a distant professional class; you’re people doing vital jobs in difficult circumstances with diligence; thoughtfulness and humour.  The healthcare that we have rests upon the belief of the public in the reasons for its existence.  It’s you, out there in social media, thinking and learning and talking and promoting in public that are one of the strongest weapons we have.

The second spectre chilling the bones and turning all around it sour is ignorance.  Healthcare is complicated.  Healthcare systems even more so.  If we don’t work in healthcare we will usually count ourselves as lucky that we don’t know how it works.  Most people only have a passing knowledge of what the real engines of health care look like.  This is perhaps as it should be.  We don’t , after all, all need to be trainspotters to get on a train.  We just want to trust that the healthcare we need will always be there for us.

When the money starts to falter, though, the public is asked to make choices about what is and isn’t important.  What should and shouldn’t be funded.  Who should and shouldn’t take priority.  Even those of us who a deeply dug into the business of healthcare often shrug, crumple our faces and say ‘well, it’s, err,  complicated’.

The public is regularly asked to make or to accept decisions regarding health care policy that they have no way of fully understanding.  You all understand that how we do healthcare is as important as the individual treatments from which that healthcare is constructed.  In the vacuum; tabloid newspapers get to set health policy and public debate becomes a battle between bullshits.  You all, as health care professionals or healthcare professionals to be, have the power via social media to bring truth; to add light and shade; to explain; and to help give context and human faces to what might otherwise look like dry debates held by grey and faceless people in offices or thundering headlines above lurid scare stories.  You are the people who can bring debate back to what really matters: how do we help everyone to have the longest time in life with the least suffering and pain.

Every time you talk about the realities of your job and the questions it throws up; every time you share with others the best ways to get the best outcomes; every time you tweet, blog or facebook as a professional that cares enough to add to people’s understanding of how things work and how things are; you are helping others to understand and to see what really is important.

When political pressure to do one thing or another intensifies, you can be a professional who brings real knowledge and value to public debate rather than being a corporate robot or a political flagwaver more in love with winning an argument than making sure people don’t suffer.

The third and final spectre wrapping its ghostly arms around us is austerity and minding your own business.  When there isn’t enough to go around; everyone turns to their own plate.  At just the time when we need to be finding new answers to wicked problems, there will be many who want to concentrate on the frontline.  On keeping their head down.  On avoiding anything that might distract from the job at hand.  ‘Just do your job,’ they’ll say, “and everyone else will do theirs.’  The problem is that this is exactly what people do while things around them are falling to bits.  They bunker down; focus; stop looking around them.  The visible horizon shrinks and life becomes a series of tasks one after another after another until it’s time to go home.

At a time where it’s becoming clear that more of healthcare is about what happens outside of the hospital on the hill, social media is giving us a unique way of building new relationships; finding new things out and connecting with both professional peers and with people on the other side of healthcare.  At the time when we need to be helping people, including ourselves, make sense of the healthcare challenges ahead of us; too often we will be silent, inaccessible, absent.  We’ll withdraw into our professional shells at just the time when we need to be reaching out to each other and to the world at large.  We’ll let connections wither rather than tending to them.  We’ll become the very thing that others accuse of us of being: inward facing; set in our ways; aloof and out of touch.  At the point where we need to be making the case for the best possible healthcare and putting our heads together to see how it might happen we’ll instead isolate ourselves further as things crash down around our ears.

What is to be done?

If you are a social media user you have access to things that your non social media using peers and the generations who came before us do not.  Geography, time and space no longer limit who you can meet and converse with.  You aren’t limited by what books are in the library or which reports are on the shelf.  You have a freedom of movement and association that allows you the chance to be in many places at once; in many conversations; with many people you’d never have met in real life.  You can jump barriers and ignore boundaries.  You never have to be alone with your ideas and your concerns and your ideas.

You can be the people who bridge the gaps; the people who know how patients feel; the people who can see what effect the changes of policy and practice have on wider public opinions and sentiments as well as within your profession and within the systems they sit inside.

You can make things happen in ways that were impossible before.  Social media makes relationships possible that would never have even begun prior to its existence.

In social media you can build the trust we need to make sure that good things can happen.

So, that leaves me with one final question, as public professionals just what is it we going to make happen?

In social media, through things like we nurses and the things that will come after it, we have the possibility of building what has always been more theoretical than actual: a living, breathing community of people, both professional and not, committed to making whatever healthcare system we have the best it can be.

Social media can’t solve anything on it’s own.  But when it brings us together and when it makes the usually invisible visible, we might just be in with a fighting chance.

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

Posted in Uncategorized | Leave a comment

Reflections on a shadow minister for mental health

Mark Brown reflects upon what the advent of a (Shadow) Minister for Mental Health means for mental health debate in England.

On Sunday 7th of February 2016 I was lucky enough to be present at Changing Minds, a weekend long mental health themed festival at London’s Southbank Centre.

The final keynote was an interview with Labour MP Luciana Berger, the first ever Shadow Minister for Mental Health.  In front of an audience in the Clore Ballroom she what she felt the greatest issues were in tackling the current challenges in the lives of people with mental health difficulties and what she viewed her role to be in the process of Labour policy development.  In the discussion of her role, Berger stressed strongly that her brief did not end at improving the provision and funding of NHS mental health services.  She said that she saw it as vital to add a mental health dimension to discussion arounds other areas of policy, listing her work with colleagues on policy formulation around areas such as housing and education.  I asked from the audience what she felt was the biggest uphill struggle in her brief so far or in the future. Her answer was “all of it.”  She was keen to stress that the audience should remember that she represents the party in opposition.

In the weeks after Luciana Berger’s appointment to the Shadow Cabinet I was asked to give comment by Disability Now on what her appointment meant for mental health more generally.  The comment I originally gave was much longer.  What interested me was that my thoughts at the time of the value of a minister for mental health, shadow or otherwise, almost directly reflected the position that Berger herself expressed to the audience at the Southbank Centre.

Looking out my original comments, it was interesting to see how closely her chosen understanding of the role mirrored my own musing.  As my full comments said:

“It’s a victory for the raised profile of mental health that there is political capital to be gained by addressing it. There’s something strong to be said for a minister (or in Luciana Berger’s case Shadow Minister) for mental health. Mental health is potential an issue that runs through all other areas of public policy, rather than being a particular piece of government. At a time where it is neccessary to find traction for the consideration of the mental health or illhealth of people as it interacts with public policy; a cross cutting role makes sense.

“It’s worth noting that Scotland has taken a different approach to mental health to the national government, with a stronger in principle focus on mental health across policy rather than just within health or social care.

“Even a shadow minister for mental health can help to bring texture and context to policy debates about mental health which, without an anchor in the real world of people’s lives tend to fly off into rhetoric and abstraction.

“In many ways it should be the role of a shadow minister for mental health not just to turn up when mental health services are being discussed; but to turn up to everything else and bring an understanding of the ways in which a given policy area impacts upon the mental health of the country and the lives of those with mental health difficulty within it. This means asking not just the question ‘how do we make mental health services better?’ but also ‘how do we make a society that supports those with mental health difficulties well and which creates the conditions for positive mental health, regardless of the policy area?’ An analogy for this might be Environment Minister rather than Care Services minister, a minister responsible for holding other ministries to account for their effect, positive or negative, on a particular cross cutting issue.

“To actually begin to take on the question of the ways in which a society better protects its mental health and the health of those that experience mental health difficulties is in some respects a politically unpalatable one because it doesn’t just suggest making better mental health services but also suggests acting upon the social determinants of mental ill-health and on the establishment of strong protections for those who have need of support, treatment or care.

“At present all political parties are dancing around the issue and finding it difficult to give voice to the idea that what we currently have is inadequate, outdated and often greatly out of line with the wishes, needs, aspirations and desires of people who experience mental health difficulty. Austerity is not good news for people’s mental health and tends to cut most harshly against those in most need. People with mental health difficulties often find themselves at the harsh end of of both public policy and market forces, tending to earn less over a lifetime, tending to be more reliant on social security protections and taxation funded support. People with mental health difficulties tend to end up poorer than they would if they had never experienced mental health difficulties; and being poor tends to increase your chances of becoming unwell.

“Mental health services are a vital part of helping people to have the best life they can have but even the best funded; best developed mental health service cannot remedy situations of economic and social inequality. While a focus on prevention is laudable it offers little for people who are already unwell and offers nothing to people who currently have chronic health conditions. No political party is currently answering the question of how we improve the quality of life for those who are already unwell and will always be some variety of unwell.

“I’m looking forward to a political debate about what it means to have a mental health difficulty in the UK and for a mature consideration of the ways in which the common levers of public policy can make life better or worse for people with mental health difficulties.”

As I have written elsewhere, we are still in anticipation of the independent Mental Health Taskforce’s five year mental health strategy.  Even this document, concerned only with NHS mental health services, seems according to some sources to suggest a far greater outlay on meeting mental health need than is currently budgeted.

It would be interesting to see the effect of creating a Minister for Mental Health in  Government.  My sense is that such a role in a majority government would open a can of worms with which few Westminster governments would be comfortable.  In fact, one of the most dangerous things an existing government could do would be to fully take on the process of embedding mental health and mental wellbeing at the heart of all spending decisions.  We might like it but I’m sure any Chancellor would be less than keen.

When thinking about the needs of people with  mental health difficulties in England, the more you look (and listen), the more you find.

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

Posted in Uncategorized | Leave a comment

Personal budgets and mental health: Scotland isn’t England

Personal budgets for people with mental health difficulties to use to find ways of meeting their own self defined needs are more often debated than seen in the wild. Mark Brown reflects on Scottish experiences of making personal, or self directed support, budgets happen and where England might be pursuing a different path.

On 17th of December 2015 the Social Care Elf published a summary by Martin Stephens of the paper  Power, Choice and Control: How Do Personal Budgets Affect the Experiences of People with Mental Health Problems and Their Relationships with Social Workers and Other Practitioners?.  The paper details ways patients with enduring mental health conditions in England, and the practitioners that support them, are affected by personal budgets.

The paper argues that the ways in which people understand personal budgets and the power they do or don’t involve influences how those budgets work in practice.  In England the personal budgets picture is still somewhat muddy.  It’s always like Anarchy in the UK (Coming sometime maybe); a perpetual ‘next big thing’ that never quite arrives either in health or social care and is one that excites as much rhetoric as it does action.

Based upon interviews with people with enduring mental health difficulties who currently have personal budgets and the professionals who support them, Power, Choice and Control found there was a degree of ambivalence on the part of practitioners about personal budgets, with the suggestion that some were not comfortable with relinquishing control.

On the face of it, personalisation always looks like an obviously good deal.  The proposition ‘would you like to choose what services you receive to support you and what those supports are?’ feels naturally better that the proposition ‘would you like  someone else very distant from you with a vague idea of what you need deciding what should be available near you that might meet your need if you qualify for it and they have space on their books?’  In practice, as is often the case with mental health and disability more widely, it just isn’t that simple.

According Stephens’ summary of Power, Choice and Control, much stress was put upon the service user to be their own advocate: “Many participants described taking on responsibility for each part of the process, assessment, support planning and advocating for the plan with social workers and managers. While this could be empowering for some, others found this somewhat of a burden.”  Some professionals felt more comfortable when service users were grateful for their budget and some service users felt they should be grateful, being reluctant to negotiate the amount of funding their budget represented.

Power, Choice and Control suggests that direct payments – cash in your bank account after your local authority has signed off the plan you have drawn up – are the primary way that personal budgets in mental health would work.  Attitudes to this differ, as Stephens summarises: “Service users gave accounts of what seemed more like a passive approach to accepting the responsibilities of managing their personal budgets, rather than deliberate resistance. They reported a lack of interest in having control or that practitioners just took over and did not give them the chance…  some social workers in the study believed that some long-term mental health service users and those who were still unwell were unwilling or unable to assume responsibility for managing the personal budget.”

The equation for the way in which personal health budgets should work could be characterised as ‘What I have + what I need = What is possible’.  Unfortunately, this equation in England appears to start in the wrong place, looking more like ‘What is possible = what you can have + what you already have.’

It’s different in Scotland

In Scotland Self Directed Support (SDS, the Scottish name for a personal budget) is law.

In November I was lucky enough to be invited to Edinburgh to contribute to ‘Taking a Chance’ an event on Self Directed Support (SDS) and Peer Support.  The event was a kind of ‘how do we make this happen?’ day.  I summed up a similar event in Glasgow in August 2012 just before the assent into law of the Social Care (Self-directed Support) (Scotland) Act in November of the same year.

The event I summed up in 2012 was much closer to a ‘should we make this happen?’ day, with a fair few more dissenting voices asking whether personalisation and the taking of personal budgets were a good idea for people with mental health difficulties.  The debate was very similar to the issues outlined by Power, Choice and Control.  People worried about the capacity of others to manage their own budget, defending other users of services they considered to be less able than themselves.  People were suspicious that these personal budgets were a cloak for cuts to services.  Service providers were worried that such personal budgets, implemented at a time when their block contracts and grants were being reduced would seriously curtail their ability to provide the range of services that they currently offered.  Other fears voiced to me included the idea that SDS turns individuals with disabilities or health needs into employers; giving them the added worry of dealing with payroll, employment law and the like, something that the range of options in law in Scotland avoids.  Another concern was that a system moving to SDS would remove the opportunity to vote for the status quo; making people take on self managed services when they really want someone else to manage their care and support. .

In contrast to the last time I was in Scotland discussing SDS, there were far fewer voices opposing the idea or personalised budgets now that they have, in theory, been implemented.  This is arguably because the Act takes into account many of the criticisms of the idea of personal budgets.  In Scotland SDS can, in theory, be taken a number of different ways. A person’s individual budget can be:

  •  Taken as a Direct Payment (a cash payment)
  • Allocated to a provider the individual chooses. The council or funder holds the budget but the person is in charge of how it is spent (this is sometimes called an individual service fund)
  • Or the individual can choose a council arranged service
  • Or the individual can choose a mix of these options for different types of support

Interesting for those of us in other parts of the UK is Option 4, the choice to be able to have an ‘all, some or none of the above’ option depending on what it is you want to happen.  This removes some of the the all-or-nothing binary from SDS that still seems to bedevil thinking about personal budgets in England allowing someone to choose what kind of decision making is most appropriate for them.

Listening to the speakers across the day I picked up that while there might be an open field of possibilities once you access a Self Directed Support Budget, you first have to squeeze yourself through a very tight gate with a very stern keeper, one perhaps keen that you stick to the footpath rather than straying off it and upsetting the sheep.  To receive an SDS budget a person still needs to pass through an assessment of their needs and, as is always the case it seems, the assessment process is often not properly funded as a separate service.  This means that the promised land of choice is often over a sea of complications.  I heard someone say that there were less people accessing mental health support directly from having mental health as their primary need and more people with other health needs who were accessing mental health support in addition to support for their mental health needs.  The suggestion was that it was easier to claim a personal budget for physical needs than it was to claim one for mental health needs.

This frustration is echoed in Power, Choice and Control, with Stephens summarising: “After support plans have been agreed between service users and practitioners, the plan has to be approved by the local authority. Hamilton et al found that service users experienced this process as confusing and disempowering. Practitioners also reported feeling powerless over these decisions, although sometimes used this as a way of distancing themselves from responsibility for the decisions made.”

As ever the best case for personalisation was made by someone who desperately wants it to work.  One of the speakers, herself supported by a personal assistant, made the case for the way that self directed support can turn the key to unlock greater possibilities and opportunities.  She spoke about the ways in which she didn’t want a service as something to attend: what she wanted was the addition of services in her everyday life that would augment the situation and remove restrictions imposed by her condition.  She spoke of the frustration of knowing what she needed to clear some of the blockages in her life but being offered things only once they had passed through the prism of service delivery.  She spoke about the ways that what she wanted might be something very particular; but what she was offered only resembled what she wanted in a very rough way.  An example of this might be want to pay a cleaner but ending up with a support worker to support you doing the cleaning yourself.  To a service provider this look right, but to a person? Not so much.

Disruption

For me it’s impossible to discuss personalisation without discussing disruption.  Despite being a movement about putting the person with needs at the centre of choosing how to meet those needs, personal budgets or SDS also requires business models different to the ways in which previous forms of support have been provided.  The old block grant or contract model could be described as someone somewhere buying a big chunk of something and then offering it to people: like buying a palette of baked beans from the Cash and Carry and then handing them out to whomsoever qualifies for a tin. The creates economies of scale – it’s cheaper to supply lots of the same thing – and makes it easy to plan for the future because you always know how many tins you’ve given away and how many you have left.

In theory, a personal budget is more like going to a shop and perhaps buying beans.  Or sending someone else to get you some beans.  Or deciding you don’t want beans at all.  This means that you can’t just buy a load of beans from from you block grant or contract.  You have to think about what else people might want to buy and to work out how you might make it available.  It might turn out that people do want beans; but beans made to their own recipe.  Or a variety of beans that you can’t get from the Cash and Carry.

Of course, care and support are nothing like beans; but this cuts both ways.  People who are worried by personal budgets point out that they may deprive people who don’t meet the threshold for a personal budget having support to access; as the money arriving in the form of block grants and contracts enabled larger organisations to survive and gave the financial security to develop and offer other kinds of support.  They would argue that it’s possible to deliver a personalised service within an organisation that previously would have rolled out a more standardised set of services.  On the other hand, proponents of personal budgets point out that what is being offered by such block grants and contracts is, at best an approximate match for what people want and need and is designed around the needs and structures of organisations rather than the wishes and needs of people.

As such, SDS and personal budgets present a particular challenge to voluntary sector organisations such as charities who have often relied upon the larger, regular payment of grants and contracts to employ staff, rent or buy premises and to maintain other activities like fundraising or the development of other services.   As I’ve said elsewhere at much greater length it’s hard to see how existing mental health orientated  organisations will contend with increasing take up of personal budgets without fundamentally changing both what they offer and how they offer it.

But if the larger existing organisations don’t survive, what kind of organisations will come into existence?  In England this discussion does not have the prominence of other debates in personalisation about resource allocation, assessment and management of budgets; suggesting that south of the border the discussion remains firmly dominated by those who engineer systems and develop policy rather than those that tailor services to the wishes of those who might choose to use them.  The English debate about personal budgets is, perhaps, dominated by the interests of those closest to the current seats of power in health and social care.  It’s notable how little heard the people who would actually be involved in creating the new kinds of organisations and services that would meet the needs of people with enduring mental health difficulties as they are now, if indeed those people exist.  As was the case in Scotland three years ago, the money is not there to develop a service that people with enduring mental health difficulties might actually want to purchase until enough people have both opted for a personal budget and passed the criteria to receive it.  Yet, until there are examples of the kinds of new services that people might opt for and strong and convincing examples of what is possible; people (and professionals) will quite sensibly wait and see.  I described this to the audience of the event in 2012 as being like a school disco where everyone clung to the walls waiting for someone else to take to the floor and get the dancing going.

Peer services

The day in Edinburgh was also concerned with the ways in which peer support, support provided by other people with direct experience of mental health difficulties, and how that could contribute to SDS.   A number of the speakers came from organisation based in rural areas; where services and responsibilities were spread out.  It struck me that these areas presented far greater learning for the idea of SDS and personal budget service delivery than the examples taken from larger urban organisations.

One of the challenges of service delivery is that services require density of customers or service users to be viable.  How many service users they require depends on how much it costs to run the organisation and how much it is reasonable to charge for the service.  Traditional, non-personalised, services create density by making things happen in a particular building at a particular time with the expectation that everyone who is interested will come to them, allowing for the economies of scale.  Rural areas cannot deliver services in the same way. While the prevalence of mental health difficulty might be exactly the same; there a few people per square mile, meaning that people have to travel far further and, even then, there may not be ‘enough’ people with similar needs to run a viable service on the model of an organisation with standing staff and premises.

The experience of people with mental health difficulties in more rural areas has often been ‘we’d love to provide you with the support or help you need, but we’re sorry that there just aren’t enough people with similar needs and wishes to you to make it viable to run a service. So there isn’t one.’  The ways in which colleagues from such areas have gone about developing services that people need and value actually tells us much more about one of the ways in which personalised services might develop outside of being delivered by organisations trying to convert from block grants and contracts to personalised services where the amount of demand might not demand a full time staff post or a long term premises.

The speakers from rural areas spoke about the ways in which they started small and made use of peers and peer workers to build things from what was available.  As I’ve said before, I think micro-provision holds the greatest promise for providing the kinds of specialist services that people with enduring mental health needs who qualify for personal budgets need and want:

“Micro providers, being very small, have a business model that is not based on achieving economies of scale but upon limiting the cost of each transaction.  In practice this means delivering a service that is only supposed to have a limited number of clients.  In a lot of situations, the needs and desires being met by personalised services will not lend themselves to density.  The chances of there being sixteen hundred people in a town of 60,000 people, with long term severe mental health difficulties and who want to take courses in linux coding are slim.  The chances that there might initially be ten is possible.  It can be guaranteed by finding those ten initial people and setting up the micro-provision to serve them at a price that works for both parties, a process otherwise known as market research.

There is a a kind of virtuous circle in micro-provision in that it can be the opportunity for people with lived experience of mental health difficulty to start small businesses or charities to provide help and support to other people with mental health difficulties.”

Power, Choice and Control suggests that people valued support from peer organisations when it came to managing a personal budget, continuing to see peer services as providing mainly support and fellow feeling.  It struck me that some of the experience of the speakers from more rural areas of Scotland suggests a very different role: people with mental health difficulties actually become the providers of services which can be purchased by those who manage to finally achieve a personal budget.

In a national situation where austerity policies are eroding the existing landscape of larger providers, with local authorities being required to make even great cuts to ‘non-essential’ services, it is perhaps the experience of these rural organisations that have the greatest lessons for the ways in which to keep choice viable for SDS and personal budgets in general.  I’m led to understand that in the new year Scotland is exploring ways of develop the capacity of user-led mental health organisations and groups to deliver such services.

As I said to a room full of people in Glasgow in 2012: what we need to make personal budgets is good things for people to buy with them and imagination about how to make them work.  The measure of them will be whether they make people’s lives better on their own terms; so we require not compliance but cunning, bravery, and to find a way of tasting what a better life might be like.  It’s not good enough that people with mental health difficulties are held back for want of being able to find a service that makes their life more them-shaped.

It was evident that Scotland is still finding its way through SDS; but even in a drafty methodist hall in Edinburgh it was clear to me that a conversation about how we can solve problems and make personal budgets work is better than a never-ending discussion about whether we should even try.  Scotland hasn’t solved all of the problems; but it might just have a much better idea of what exactly those problems are.

In situations where the needs, desires and situations of people with enduring mental health difficulties have changed remarkably since the setting up of our existing services and service delivery models, it vital that we begin to look at making sure that people can get what they want and need to have the life that they want; need; and, more importantly, deserve.

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

Posted in Uncategorized | 1 Comment

Is clinical research essential to develop a good mental health app? #mindtech2015

The below is a speech made by Mark Brown opposing the motion “This house believes that clinical research is essential to develop a good mental health app” at the Elfie Debate - Can research really tell you how to make a good mental health app? which was held in London on December 2nd 2015 as part of Mindtech 2015.

 The motion I’ve been asked to oppose tonight is: “’This house believes that clinical research is essential to develop a good mental health app”

Interestingly, this isn’t the original motion we were going to debate tonight.  The original motion was: “Can research really tell you how to make a good mental health app?”

On the surface they sound like two very similar propositions, when in fact they are very, very different.  This  means that tonight’s debate is fought upon the ground of clinical researchers, bringing the discussion of mental health apps firmly under the heading of medicine.  It means we’ll be debating risk, efficacy, morals and ethics.  In this debate apps will become medical devices, with clinical researchers valiantly saving us from terrible, harmful, ineffective and dangerous apps.

On those grounds it is obvious to me that my colleagues defending this motion will win on those grounds.  None of us want dangerous, harmful apps out there in the world seducing the unwary and  sucking in the lost and worried with their snakeoil charms.

It seems to me that we have a situation analogous to the debate that once divided the field of public policy analysis.  Once, public policy analysis was about studying the formulation and implementation of public policy to understand how it did and didn’t happen and how it did and didn’t work.  Then some analysts questioned whether it was their job to sit on the sidelines just making knowledge.  They thought ‘if we understand this stuff so well, we should start to get our hands dirty’.  In their 1984 book ‘The Policy Process in the Modern Capitalist State’ Chris Ham and Michael Hill define the difference as being analysis OF policy versus analysis FOR policy.

Recently, in a discussion at the Mental Elf site about the lack of clinical evidence for many popular depression apps I said: “At the moment, rather than being a true partner The NHS is more like an in-law, tutting and shaking its head that tech is doing it wrong but giving no guidance as to how mental health apps might do it right.”

If researchers are not careful they will become gatekeepers of innovation rather than enablers,  a dead hand upon ideas rather than an encouraging embrace.  People developing apps want your knowledge and want your insight, but blimey are you often sniffy about actually getting it to them.

It would lovely to be able to subscribe to the idea that we are engaged in a glorious shining path toward enlightenment, with each researcher standing upon the shoulders of the generation of researchers before them, each new bit of research leading us closer to the promised land.  But I don’t think that’s how it works in the real world.  Clinical research is an industry like any other.  And it’s not one that’s well aligned with the realities of making tech products happen, at least not in mental health in the UK.

In an ideal world academic and clinical research would be at the forefront of pushing the boundaries of what is possible via digital technology for better mental health.  Instead clinical research is trailing behind.  The cutting edge is elsewhere.

The clinical world underestimates the financial risk involved in creating genuinely useful mental health apps, is often blithely unaware that money is a ticking clock.  The assumption is that everyone who is a non clinician who tries to create an app that will help people with their lives lived with mental health difficulty is at best a kind of good spirited bungler and at worst a venal wannabe tech oligarch.

The pipeline between mental health research and mental health  implementation is broken,  if it ever was established. Cutting edge mental health and tech research should be able to find its way to partners who can turn it into applications that have user experience at their heart.  Academic and clinical research is often awful at the kind of quick hunch checking that user centred design requires.  It often wants to have a hypothesis to test before speaking to any real people about what the hypothesis should be.  Too often it confuses knowing with acting.

Whether you like it or not, Silicon Valley is not just a place.  Silicon Valley is where clever people who know things, like clinical researchers, meet with people who have money and who can help take cleverness to market.  Many of the technologies that made up the original iphone were developed in one way or another through public funding.  It took someone who cared about the consumer to combine them into the world changing device we all have at least seen in the hands of others, in not in our own pocket.

I’ll let you into a secret, Docready, the tiny HTML5 app that helps young people get ready for their first ever visit to the GP which I was involved in the development of was based on no clinical research whatsoever.  The concept and the final implementation of the app were all done by working closely with young people who actually have the problem that it solves: the fact that it’s really scary going to see your GP about your mental health.

It’s not a problem that came out of the clinical evidence base, it’s a problem that came out of the lived experience base, the problems people really have base.  We’ve been knocked back for funds because we couldn’t prove where in the clinical evidence base the ideas comes from.  Not everything that will help people with their lives lived with mental health difficulty is clinical.  Although clinical research can help to understand what clinical impact it has, if any.  A signal cane for a partially sighted person is a big intervention in their lives, but would you evaluated it using clinical research tools?

If my colleagues supporting this motion fail to define the how and when of clinical research rather than focusing on the why, I’d suggest you should reject the motion even if you mostly agree.  Which you probably will.

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

 

Posted in Uncategorized | Leave a comment

How can digital technology make better mental health for all?

Text of keynote speech given my Mark Brown to the Royal College of Nursing 21st International Network for Psychiatric Nursing Research conference: “Building new relationships in mental health nursing: opportunities and challenges” in Manchester on 18th September 2015.

The question I’m going to try to answer today for you is ‘how can digital technology make better mental health for all’.

I’m in an interesting position speaking to you today in that I am neither a nurse or a researcher.  I don’t even work for the NHS.

I have mental health difficulties myself.  Increasingly over the last couple of I’ve become known for turning up at events and shooting off my mouth about the interaction between digital technologies and mental health.

Digital technology really just means technology that doesn’t have moving parts, isn’t made out of cogs and pistons and crankshafts.  In the context of today, what I mean by digital technology is things that use computing power and which can interact with the world and each other through connection to the internet.  So we’re talking about computers, phones, tablets and the like but also the software, apps and programs that run on them.

Roughly speaking I’m going to be talking about why digital technology might make a difference to the industry of helping people; why we might avoid thinking about digital technology and why it seems scary; what digital technology means for mental health nursing and some ways in which we can actually help digital technology to happen that might make the world a better place.

One of the reasons I’m so enthusiastic about digital technology is that digital technology has changed my life.  I stand before you as a kind of cyborg, like a kind of very low budget Six Million Dollar Man (For those of you that are a bit young, the Six Million Dollar Man was a man who was in a crash who was rebuilt with robotic parts.  Imagine The Terminator in flares solving seventies crimes.)

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 peers.

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

My phone.

It’s basically a combination of stuff like calendars, email, maps and the ability to store 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.

In mental health, our prime mechanism is people doing things while other people are in the room.  That’s what we think of first.  We think of support as being you, me, together.  Or you, me, together plus some sort of medication or treatment.

This leads to us into a kind of trap when we think about the potential of digital technology in mental health.

As it stands, what delivering better mental health for all means depends on the professional platform from which we survey the question.  To nurses it looks like nursing.

I can see why some people reject digital technology.  One: it’s about digital and, wow, do some people have some fears about digital. Two: it’s about personal preference and choice which, again, some people have a problem with in a health context and Three: it’s about little messy things about people’s lives not big massive shiny things made out of numbers and it involves, GASP, spending time with people who might not even work for the NHS.

That can make it difficult to see where digital technology can fit in; especially if our primary experience of digital technology at work has been some god awful new IT system that takes four times longer to use than the way we used to do things.  The NHS has a history of buying very big, very expensive and very crap IT.  Luckily that’s not what I’m advocating.

So what can digital technology actually do?

Once digital technology was a world of desktop computers, each one whirring away on its own.  Then the web arrived and suddenly each computer wasn’t on its own. Suddenly computers all around the world could talk to each other which meant that information didn’t need to stay in one place and one time and neither did services.  Then smartphones came along and we realised that the internet didn’t have to be inside a computer plugged into the mains.  It could be in our pocket or our bag.  Suddenly information and communication and services could be wherever we are.  Each year the cost of computing power goes down and the things that digital technology can make possible grows.  The smartphone in your hand now is more powerful than that computer that sat on your desk.

It’s the combination of the internet and devices that has really changed things.  Smartphones and tablets are versatile little devices with a variety of sensors which can do anything from knowing where you are in the world, to knowing what time it is to sensing vibration or knowing when you should leave the house to catch the train you booked.

Digital technology like this means that things, as long as they’re digital, no longer have to be in one place.  As long as you have a device to access it, an online service can be provided to hundreds of different people in hundreds of places at once at very little extra cost.  Or a patient record can be wherever the patient is while also being where a professional is.

Digital technology also means that you can use lots of different methods of doing the same thing.  There’s lots of different ways to send an email; but all of them are still emails.  If you have an android phone, you can change the keyboard if you don’t like the one you’ve got.  People can carry a pocketful of tools wherever they go.  We all, for a very low cost, can put together own own suite of useful things, communicate instantly with friends and strangers and interact with a variety of services.

Digital technology isn’t that ‘that weird thing on computers’, it’s a part of people’s lives.  Increasingly it’s a layer of connectedness between people and between people and tools and information.

Digital means that we can spend time to develop tools for people to use which can be replicated with minimal cost.  If we make it and get it right and it does a job well, we can extend the number of people who can benefit from it with very few additional resources.

Digital technology can sometimes make possible something that currently isn’t possible because it’s too difficult, to person-time intensive or needs to happen in one place at one time where someone can’t be.

We could, if we wanted, tomorrow instigate the biggest ever study into the effects of psychiatric medications if we wanted.  People are already using wearables to track their heart rate, their activity, their sleep. People are already tracking moods and calories.  We could just say ‘hey!  people! contribute all of that data to us along with what medication you’re taking.  Then we’ll try and see what it tells us’.  We could find ways of personalising dosage of that medication from that data.  It would tell us lots of things that we hadn’t thought to ask about.   People could generate the data for themselves and then hand it over willingly, in all of its complexity for others to make sense of, like happens in the citizen science movement where people put up home-made weather stations in their gardens to collect local level climate data.   But we can’t be arsed.  Or more correctly, we just haven’t got our heads around the possibilities.  I’ve been involved in the development of some digital tools and digital projects over the last couple of years; so it probably makes sense for me to actually give you an example of the potential in digital technology for making things happen in different ways.

I was lucky enough to be part of the team who development of Doc Ready, a very simple web based app that does one thing and one thing only: it helps young people (or anyone else) prepare for their first visit to the GP to talk about their mental health.  It was delivered by a team comprising of Enabled by Design, FutureGov, Neon Tribe and my own company Social Spider.

The idea for Doc Ready came from young people being really unhappy about their experiences of talking to their GP about mental health, feeling that GPS often misunderstood.  Their suggestion was for an app that would work like a Star Trek type translator for GPs that would turn teen speak into doctor speak.  The problem that had been identified was a real one – young people feeling that GPs didn’t understand them – but the solution wasn’t quite right.

Still working with young people, we turned the idea around, recognising that it would be impossible to change the entire profession of general practice and came up with a tool that helped young people to prepare a checklist of what they wanted to talk about with their GP by giving them a cloud of different experiences, like ‘I feel sad’ or ‘I’m always late for school or work’ or ‘sometimes my thoughts make me scared’, which they could choose from to make a kind of agenda.  The idea was that young people could use this tool to prepare but also that the tool would help them to see the kinds of things they were ‘allowed’ to say to their GP.  It’s up for an international service design award in New York next month.  We got the basic function right by involving young people at every stage of the process of development; getting to co-design, test, break and strip it down until it did one thing really well.

It’s already been used as the basis for a web app to help young people to prepare for CAMHS appointments commissioned by a Trust in the north of England with more versions in the pipeline.

So, with Doc Ready we didn’t directly treat young people’s mental health but we did find a way that young people could make things work a little better so that they could get help for what was really troubling them rather than doing that thing we all do of coming out of their doctor’s surgery saying ‘Damn! I wish I’d asked them about that!’

For me, the approach we took with Doc Ready is key to thinking about using digital technology to help people’s mental health.  It’s not about big, grand things that replace entire care pathways. It’s about finding small well defined problems people really have then trying to solve those problems.  A lot of the time the solution to the problem won’t be digital at all, but if it is digital we need to know that we’re getting it right because now, more than ever, we need better solutions to problems.

The state we are in

There are many things that we know to be true about what people should and shouldn’t do about their health. Science is awesome. But science and healthcare aren’t quite the same thing.  Healthcare is what happens where technology, culture, practice, knowledge and resources meet people’s real lives.

In my view, we’ve reached, at least for the time being, the end of the era of big breakthroughs in health. At the very best we’re at the end of the era where a massive breakthrough will appear in enough time to sort out the gap between the funds we have available and the needs that we currently aren’t meeting.  A lot of people need things they currently aren’t getting.  We’re stuck with the treatments we have, many of the structures we have.  We still, sadly, have the historic overhang of a system that finds it difficult to see mental health difficulty as chronic rather than episodic; far more comfortable with treatment than support.

I think the area where our advances will be made, at least in the short term, are in the sweating of what we do have; continuing to explore new ways of making a bigger impact.  But we’re not going to get much that’s really new from traditional sources.  And certainly not without a massive change in the way that’s funded.

If we make sure that we get digital right; it shouldn’t take any of the existing stuff we do that works away; it just provides an entirely new tool box to get things people need to happen to happen.

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

What it’s looking like to me is that in situations where mental health need is rising, resources are falling and no great breakthrough is around the corner; we’re going to need to find ways of getting more out of what we’ve got.

In mental health, we are still stuck with the history of stigma, of being hidden away from communities, of our work being secret.  The places where we work have the historical legacy of being big buildings on big campuses where people who were unwell were brought until they were well enough to be let out again.  Mental health has felt like it was about bricks and mortar and staff. We still talk about mental health beds, despite the fact that the majority of people with long term conditions are not currently inpatients.  In mental health , because system change is expensive and because we’ve never had enough money or enough people, we’ve tended to try to make patients like me fit the services we provide.  Digital, if we get it right, can help us to do the opposite and to fit services and support to people.

Digital technology brings us together

As some of you will know, I tweet a lot.  I think social media have created spaces where people can meet each other and learn.

By making possible connections that could only be made previously through arduous effort and often through being lucky enough to meet the right person in the right place at the right time; digital technology can connect us with people.

Social media makes it possible for us to connect more easily with colleagues and with the latest news and research, but it also makes it easier to connect with the people we’re meant to be doing this for: people like me.  People who experience mental health difficulties themselves.

For the first time in history it’s possible for anyone with an interest in mental health to have direct access to people with mental health difficulties and their lives.   The only ways in which we could collect data from people was if they were right in front of us, so we would observe.  People learned about mental health difficulty second hand.  The link between what we ‘knew’ academically about people with mental health difficulties and people with mental health difficulties themselves was broken.

Now, if you’re interested, the lives of people with mental health difficulties in their raw and unfiltered complexity are just a few clicks or taps away.   If you go on twitter and look at the hashtag #mentalhealth you’ll see what I mean.  For the first time it’s really possible for people who experience mental health difficulties and those that provide services to meet regularly and just hang out together.  Not as client and health care professional but as people using social media to talk and share.

I’ve been running a year long project funded by Public Health England called A Day in the Life, where on four days across the last year people with mental health difficulties have just written about what those average normal days were like lived with mental health difficulties.  We’ve collected over half a million words of candid first person material about the bits of life that research doesn’t usually see.  We’ll be analysing it to see whether this first-of-its-kind tells us anything different about what life with mental health difficulties in England is like to more traditional forms of research.

Social media presents an opportunity for mental health professionals to become an organic part of the communities they serve by using social media to talk about what it’s like to do their job; to literally be a professional in public.  Public professionals mix with people via social media (and often in real life too): they’re the person you talk to who is also a nurse, or a the person whose blog you read who is also a doctor.  Public professionals are engagers and connectors by nature.   For people like me, who aren’t in the NHS, public professionals are a point of entry, a way into understanding it better and a guide to navigating the complicated flows of information, misinformation, spin and rumour.

Social media is the biggest opportunity professionals working in mental health have ever had to be open about what we do and to help people to understand the joys, the frustrations, the debates, the difficulties and just why we care so much about doing what we do.

I’m one of the team behind the regular #weMHNs chats on twitter where mental health nurses and people who aren’t mental health nurses debate issues around the mental nursing.  If you want to come join us, if you haven’t already, we’re @weMHNurses and we’d love to meet you.

Why we might avoid thinking about digital technology and why it seems scary

While digital technology is changing our lives every day, in mental health we’ve sometimes found it hard to really see how it should apply to us.

There’s sometimes an idea, one sometimes unfortunately propagated by telehealth providers, that technology will allow you to ‘do away’ with staff teams.  Andrew McAfee Co-author of The Second Machine Age refers to this as digital encroachment, the direct replacement of human labour with machine labour.  In mental health, as in other areas of public service delivery, there are some who feel this digital encroachment as literally that: an army of computer screens and ill-understood  gadgets skulking in the shadows a bit like in The Terminator, ready to leap out and take away everything they hold dear, including their jobs.

It doesn’t have to be either/or with tech. Different people will want and need different things.  As will staff of different services. Imagine what we could do if tech could free up more staff time to do the really important things that only humans can do?  Tech needs to make things easier and better in ways that work for people.

It’s a myth that all human endeavours are equally likely to be completely disrupted by digital encroachment.  Some things will always need direct human labour.  Mental health nursing is one of them.  We should think about digital technology as a friend that might make it possible for us to do more of the things that we actually think are important.  If we, for example, made it possible us digital technology to reduce the burden of paperwork meaning we could spend more time with people, or could find ways that digital technology might help in a crisis then that has to be worth trying.  In mental health nursing, the single most valuable resource is nursing.  Let’s find ways that resource can be best used.

So how do we make this happen?

Often, the NHS has been blind to people as people.  While this has a terrible effect on patient care it also has a terrible effect on the development of services and treatments.  Often in the design of new services or interventions the actual patient, the person with the problem is the quietest voice around the table. Or in cases where the voice is loud, it’s the voice least likely to be put to a practical use.  We often don’t really know anything about the lives of the people we’re trying to help.  We can’t picture them, they’re just a hazy mass of statistics.

You can’t design anything from statistics.  Design is about engineering solutions to problems that people have.  There’s a weird thing that often happens when the idea of doing something different in health: the wrong people do the wrong bits of the job.

What need to do is to make sure that digital technology is solving problems people really have.

One of the really cool things about medical people is that you tend to be problem solvers; but 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, 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.

Engineers like solving problems.  Mental health professionals know about mental health.  People know about their lives and how they feel about them. The mix of those three things makes good digital things happen.

I’ve spent a lot of the last eighteen months or so doing things that involve just being with people and trying to find out the problems they have with the way that things in lives work.

Looking toward digital in mental health gives us a chance to start small, to find little things that might help people by spending our time with people, by digging either into our own lives or into the lives of others.  It gives us a chance to build things that might initially change the lives and health of a few people, then a few more.  And then more.   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 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.  All of them involve hanging out a lot with the people who have the problem.  Which is awesome and more people should do it.

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

Digital technology is not a possible future, it’s an unfolding present.  Digital is already changing things.  A change you choose is much less painful than a change forced upon you.  Together we have the opportunity to make the best of digital technology so that we can make the best use of ourselves, our skills and resources.

Because if we don’t, we know that someone, somewhere in the NHS will come along and commission the wrong digital things for the wrong reason, doing the wrong things in the wrong way. Probably for the wrong people.

And that would be bloody awful.

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

Posted in Uncategorized | 1 Comment

People, health, technology and messy smallness: In defence of people driven digital health

Text of a speech delivered by Mark Brown at NHS Innovation Expo 2015 as part of the pop up university session ‘Creating Conditions Digital Innovation’ in Manchester on September 2nd 2015.

I’m betting that a number of you are here because you’re all excited about the digital health bit of the subject.  I’m going to talk to you about the people part of people driven digital health.  That’s the messy part of health: people.  If only patients were as predictable as chemistry, then we’d have a health system that ran neatly and to budget…

So, what is people powered digital health?

Put very simply: people driven digital health is what happens in the space between what our health services currently provide and the needs that people have that are currently not being met to their satisfaction.

It’s people saying ‘this!  This is the problem I want solved!’ and either solving it themselves or contributing to the process of solving it.  People powered digital health doesn’t start big, it starts small. With the things that really irk people.

People driven digital health, when it works, is about making digital products people choose because they solve a healthcare problem that they actually have.

Sometimes it’s about people who experience particular health conditions hacking together their own solutions to their own problems.  Other times it’s about engaging in a process of discovery by spending time with people and helping them to crystalise their problems and then honing those problems to such a finely defined state that they can be used by engineers to develop solutions which then can then be tested and refined.  For it to count as people driven digital health; though, it has to begin with people.

It’s about building project structures that involve, or emanate from, people who have first hand experience of the problem the project is trying to solve, or even better, are the people who set the problem the project is trying trying to solve.  People help define the problem, people help refine the solution.  People don’t just wait to be shown what the big clever medical people have made for their benefit, presented it as if it were a handmade dollshouse presented by a proud parent on a birthday.  All the way through, people driven digital health goes back to the people who have the problem and says ‘are we getting this right? Have we understood the problem correctly?’

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

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

In some respects people driven digital health is a bit of a paradigm challenger, so I can see why some people reject it.  One: it’s about digital and, wow, do some people have some fears about digital. Two: it’s a about personal preference and choice which, again, some people have a problem with in a health context and Three: it’s about little messy things about people’s lives not big massive shiny things made out of numbers and it involves, GASP, spending time with people who might not even work for the NHS.

Digital gives us opportunities to do things in cost effective ways that we could never have done before.   The future is unfolding quickly and in the case of technology the rate of progress is still accelerating.  If the NHS isn’t really certain of people’s preferences about treatment and services; it is on even more shaky ground trying to guess people’s preferences around digital technology.

Science isn’t the same as healthcare

There are many things that we know to be true about what people should and shouldn’t do about their health. Science is awesome. But science and health aren’t quite the same thing.

Healthcare is what happens where technology, culture, practice, knowledge and resources meet people’s real lives.  Healthcare is not just treatments existing in a vacuum.  Healthcare a series of interconnected realms nestled within one another like russian dolls.  Healthcare for the patient, first and foremost, is what takes place in their lives – not only the illness or challenge they face but how that illness or challenge fits into their life as it is and their life how they would want it to be.  Hidden within that there are the person’s preferences, desires, wishes, dreams, aspirations and fears.   Wrapped around that are both the treatments, interventions and aids that person accesses in an effort to maintain or improve wellbeing or health and the systems by which those interventions are delivered.  Beyond that are the wider determinants of both that system and the of the life of the person who accesses it.

There’s a lot of russian dolls there.  And in a perfect world they’d all stack neatly one inside of each other.  In the messy real world they usually don’t.  Health is complex because people are complex.  When we leave out all of the things that make people people, we’re missing a huge element of what makes things succeed or fail.  We’ve been great at knowing what works in the trial but awful at knowing works in the context of real life.

Solving problems that aren’t yours to solve

Historically the people who came up with medical solutions were not the same people who were their direct beneficiaries.  This has often meant that we have not only had to train our medics to be better medics; we’ve also fallen into the trap of trying to train our patients into being better patients.  The problem solvers have understood the world from the perspective of the problem solver only, not the perspective of the people who have the problem.  In a world where we would find it ridiculous that someone else chose our car or our phone or shoes for us we will happily ‘choose’ on behalf of thousands what insulin pump they use or what telecare will monitor them.  Your healthcare intervention is part of MY life.

In health we often recognise that the ‘patient voice’ is important, but we actually have no idea what we’re meant to do with it.  We ask people what they want and then we scoff at them for coming up with daft ideas.  We ask people what they think of things and then use that as evidence of how right we we were all along.   We want people to tell us stuff about what we should do unless they start telling us stuff we don’t want to hear.

Often, the NHS has been blind to people as people.  While this has a terrible effect on patient care it also has a terrible effect on the development of services and treatments.  Often in the design of new services or interventions the actual patient, the person with the problem is the quietest voice around the table. Or in cases where the voice is loud, it’s the voice least likely to be put to a practical use.  We often don’t really know anything about the lives of the people we’re trying to help.  We can’t picture them, they’re just a hazy mass of statistics.

Involve people

You can’t design anything from statistics.  Design is about engineering solutions to problems that people have.  There’s a weird thing that often happens when the idea of doing something different in health: the wrong people do the wrong bits of the job.

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

People driven digital health gives us a chance to start small, to find little things that might help people by spending our time with people, by digging either into our own lives or into the lives of others.  It gives us a chance to build things that might initially change the lives and health of a few people, then a few more.  And then more.   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, whether as a health professional or as a person without a medical title.  All of them go from working out with people 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.  All of them involve hanging out a lot with the people who have the problem.  Which is awesome and more people should do it.

So what’s this got to do with me?

You might be thinking: yeah, so what? Why should we think people driven digital health is important?

I think the area where our advances will be made, at least in the short term, are in the sweating of what we do have; finding out how to make what we have work better and taking what we know into areas of people’s lives in new ways and using a different set of resources.

In my view, we’ve reached, at least for the time being, the end of the era of big breakthroughs in health. At the very best we’re at the end of the era where a massive breakthrough will appear in enough time to sort out the gap between the funds we have available and the needs that we currently aren’t meeting.  A lot of people need things they currently aren’t getting.  We’re stuck with the treatments we have, many of the structures we have.

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

In a world where digital will play a bigger role in our lives and where health care will become both increasingly complex and increasingly financially challenging  People driven digital health is about people making sure that technology in health care works for them, not against them.

It’s about people making digital powered health services that  don’t waste their, and everyone else’s, time.

If you want it to happen, stop trying to commission big as if you know everything and start to go small, asking people about what really gets on their nerves about how your service works.

If you want it to happen, you’re probably going to be commissioning as many processes as you are final products.

People powered digital health is about people making sure we get digital health care right because patients have to live with where we get it wrong.

Mark Brown is development director of Social Spider CIC.

Posted in Uncategorized | Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Doc Ready repurposed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Posted in Uncategorized | Leave a comment

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

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

A video of this speech can be found here.

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

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

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

The scene

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your policy is my life.

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

The Frontline

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

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

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

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

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

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

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

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

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

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

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

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

We always vote for ourselves

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

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

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

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

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

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

Just outside the therapy room door

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

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

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

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

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

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

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

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

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

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

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

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

Helpers not leaders?

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

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

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

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

  • Listen,

  • speak with respect and care,

  • know their subject,

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

  • don’t think they know everything,

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

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

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

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

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

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

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

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

Gap between politics and practice

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

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

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

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

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

Psychology gone bad

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

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

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

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

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

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

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

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

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

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

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

Posted in Uncategorized | 2 Comments

Mental health activism: who speaks and who listens?

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

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

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

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

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

“ one of the challenges that the current generation of people with mental health difficulties face is that having come to doing stuff as ‘service users’ or ‘people with mental health difficulties’ we find it very difficult to escape from that pigeon hole.

I have coined a verb: to beneficiary or to be beneficiaried. This describes the chilling moment in a meeting or professional situation when someone changes their attitude towards you after you disclose that you experience mental health difficulties yourself; shifting you from professional peer, colleague or partner in delivering a service to beneficiary of that service. You can feel it, the withdrawal of fellow feeling and a retreat into professional well meaning, the defensive barriers rising…”

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

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

Horizontal not always vertical

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

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

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

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

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

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

A human rights based approach

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

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

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

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

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

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

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

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

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

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

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

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

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

Outside scrutiny and outside pressure

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

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

New voices, new challenges

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

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

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

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

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

Being comfortable in disagreement

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

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

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

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

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

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

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

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

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

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

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

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

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

And I think that’s what is already happening.

Well, at least I hope so.

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

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

Posted in Uncategorized | Leave a comment

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

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

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

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

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

Loss of trust

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

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

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

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

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

Your policy is my life

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

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

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

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

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

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

Posted in Uncategorized | Leave a comment