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

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

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

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

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

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

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

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

Need for change

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

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

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

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

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

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

Falling out of life

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

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

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

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

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

Do we know what to do next?

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

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

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

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

 Scarcity

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

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

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

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

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

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

How to get a future no one wants

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

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

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

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

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

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

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

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

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

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

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

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

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

  1. This is excellent work from Mark Brown – focused, clear, and with a very concise argument for action :

    For action that helps determine the future, not actions determined by a future that we fear – which is the very future that, unless we advocate what we prefer and believe possible, is probable.

    Though Mark himself makes no political statement, one has to observe that all this is a little as if we look at the opinion polls for #GE2015, and wrongly believe that what the polls say will happen is what must happen – if so, whatever relevance The Sheffield Rally was to it (around a week beforehand), what happened to Neil Kinnock in the general election in April 1992 ?

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