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World Mental Health Day

10 Oct

It’s World Mental Health Day – a busy time if you work for a mental health charity.

Up and down the country the charity I work for has been supporting people to have Tea and Talk sessions. The theme this year has been psychological first aid, especially in trauma, and we published a new guide and some excellent personal stories

Today as a part of our work with Virgin Trains  we launched a wellbeing channel on their on-board media app BEAM. The first content is a series of videos to help people to be mindful. Mindfulness is being present in the moment, and the videos we hope will give people the chance to come out of autopilot and refocus.

There are some beautiful videos of beauty spots on the route and something completely new…Slow TV…coined in Norway it involves real-time, long films of everyday things. In this case the view of the whole train journey as seen from the drivers cab – something that will interest a lot of people.

My colleague Cal wrote about his conversion for HuffPost. Even Sir Richard Branson  was blogging and video blogging about it. If you work in a charity having Sir Richard Branson talking about you is as good as it gets in terms of reach…

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I’ve got a team of wonderful staff and colleagues. They all worked themselves to the ground today, speaking, planning, thanking, hosting, attending events – people don’t tend to work or stay in charities if they don’t care.

Now I am working with companies too it is incredible to see staff in businesses taking up the cause with excitement and verve – Almost more valuable than the contents of collecting tins it’s wonderful soul food for our staff to hear staff and customers in partner organisations talking about mental health because of something we said or did.

I am proud of all the World Mental Health Days i’ve been involved with. It’s been 20 years since as a fresher I was elected to the student union in Aberdeen and first got involved in anti-stigma and awareness raising work when I myself was quite unwell.

So why do I feel a bit uneasy this week, and every time there is an awareness day?

Well…I think it is because so often the messaging around mental health days can seem to some people with a lot of mental health knowledge or experience as sanitised, approved  or even mad-washed (where mental health lived experience is added to make something look better).

It is very very hard to bring a message to the public’s ear and eye which moves understanding forward without being too saccharine, or perceived as too sellout for some of the activists in the movement, people I respect immensely.

I try and walk the line, and my colleagues do too. I try and expand the audience for mental health campaigns without diluting the impact.

I find it hard to be straightforward, positive and come up with easy answers,  whilst I know that people are existing through mental health awareness day in the same abject misery they faced yesterday and will face tomorrow.

I know that as charities we say ‘be brave, seek help’ – but that these days the chances of finding that help first time is less and less likely. It it ethical to stand and refer people to their GP if I know that their GP is likely to be stretched and the local community mental health team or crisis service stretched beyond breaking point?

I know right now that there are people I know well that may die by suicide tonight because of the trauma they have lived through and the inability of any kind of services to provide support or see them as other than problems.

Services are challenged. Complicated people ruin the  narrative of the ideal recovery. Most professionals are deeply committed and the inability of the system to support the most vulnerable forces them to face challenges they find intolerable and leads many of the best to leave, harden or to burnout.

Mental illness is fucking miserable. It isn’t cake and rainbows, it’s blood, and misery, and early death. It’s isolation, loneliness, denial of human rights. It’s trauma, and abuse, and corrosion of self.  It’s re-trauma, restraint and compulsion. It’s horrifically complicated and beautifully simple. People need compassion and hope, they don’t get it by and large.

If we use cake and rainbows as a means of drawing people in – and cake and rainbows do work – we must connect these activities to authentic experiences whenever we can.

We must find ways of drawing in public interest and charitable donations without reducing mental health to tropes and sanitised stories. That’s hard. Finding a public rallying point in mental health is hard – but we need to keep looking if we want to find ways of charitably funding innovation when government and other public funding recedes.

You can’t cure mental illness by funding white coats and cure oriented lab research – although we need better evidence and there are some excellent road-maps that highlight the kinds of research we need to see. Mental ill health is far more complex than binary illness -> cure. It is poverty, and discrimination. It is self and environment. It is politics, and society. We need moonshots in mental health, and we need rallying flags for the public. But we can’t have those, and not recognise the day to day reality of living with mental illness, or the day to day mental health challenge of being poor, discriminated against, old, or disabled either.

It’s the professional challenge that keeps me jumping out of bed to go to work – how can I personally and professionally stay authentic to the complex whilst broadening and reaching a wider audience of people who might be able to bring skills and passion to the cause.

I’m certainly not always going to get it right…but i’m always going to be learning and listening…and trying to act, try things, fail and learn, and succeed were possible.

In Glasgow yesterday my super colleagues kicked of the Scottish Mental Health Arts and Film Festival, a full octane, no punches pulled social justice festival themed on Time, which reaches every corner of mental health with every kind of arts medium. This is the kind of bold work we need to see more of. Authentic activism and voices that reflect real lives and not just ideal ones are coming forward as young people find their voice in their experiences. I think there’s a growing body of people who feel this – with lived experience and professionals skills, connected to an undercurrent of well hidden functional distress, understanding the digital world and the power of social movements…

Every working day I carry a group of people in my heart and mind. My heroes. People who have died. People who show true valour living on day by day or hour by hour. People I have loved, and love. People in the shadows of the internet and people in my closest circle.

I have the great fortune to be able to ask some of those people about my work whenever I can, and I am fortunate that they are frank – and I wouldn’t have it any other way.

 

It goes without saying that this piece, like everything else on this blog is written in a personal capacity and should be regarded as such.

 

 

Bipolar Awareness Day

30 Mar

It’s bipolar awareness day. It’s always one awareness day or another in mental health, and that can help, because talking about mental health can increase awareness, and hearing directly from people with lived experience is the best way to beat stigma.

Everybody has mental health and we all experience distress. Around 1% of us will develop bipolar disorder. Bipolar disorder used to be called manic depression. People with bipolar experience both episodes of severe depression, and episodes of mania. Mania is the exact opposite of depression.

In a depressive episode a person may feel overwhelming sadness, slow thoughts and actions, low energy, tiredness, feelings of shame or guilt and thoughts of suicide. During mania a person may feel overwhelming joy, excitement or happiness, have huge energy, a reduced need for sleep, and reduced inhibitions. These reduced inhibitions can lead to risky behaviours, uncontrolled spending, substance misuse and damaged relationships. In both states, a person with bipolar may experience psychosis. In depression this may involve feelings of guilt, paranoia, or a belief that they are evil, contaminated or invisible. In mania psychosis often involves a person having exaggerated belief in their abilities for instance believing that they have super powers, or that they are a figure from history or religion. It is also possible to experience mixed episodes, where for instance the energy and pace of mania can be combine with the guilt and anxiety of depression leading to intolerable levels of agitation or fear.

The experience of bipolar is uniquely personal. No two people have exactly the same experience. Some people have a lot of depression and few manic episodes. Some people have one episode of mania and never see one again. Some people cycle between episodes rapidly, some slowly between extremes. Psychiatry has described several subtypes of bipolar. Bipolar Type I is characterised by episodes that meet the criteria for both severe depression and mania. This is where psychosis at either mood extreme is most often seen. In Bipolar Type II a person experiences episodes of severe depression, accompanied by manic episodes that don’t become psychotic but stay at a reduced peak called hypomania. Cyclothymia is similar to bipolar disorder, where moods vary between moderate depression and moderate hypomania.

Bipolar disorder is thought to have a genetic component, as it often runs in families. That said, it isn’t a simple genetic condition, in that a large number of genes and other factors appear to be involved. Like most mental health problems, the environment in which you live and the experiences you have also shape your likelihood of developing the condition and the impact it has on you. Rates of employment in people with bipolar disorder are much higher than with schizophrenia for example, often because people have periods where symptoms are more manageable, or are absent, and because treatment can be very effective.

Even so, people with bipolar disorder are still subject to profound health inequalities and parallel conditions such as heart disease and diabetes, and may die as much as 21 years earlier than the general population, even when suicide as a cause of death is excluded. It can take up to 12 years to get an accurate diagnosis of bipolar disorder, which is a huge delay when treatment can be so effective.

The mainstay of treatment for bipolar disorder is medication and close monitoring. Mood stabilising drugs like lithium, carbamazepine, olanzapine or valproate can be taken long-term at a maintenance dose. Anti-depressant drugs or sedatives can be added to address manic or depressive episodes. All medications have side effects, many of which can be severe and themselves require treatment. Increasingly the role of self-management, peer-support and recovery movement is being recognised as key to living with what is for many a lifelong condition.

Bipolar disorder has been associated with genius and with creativity. It is certainly true that a number of contemporary high achievers and creatives have spoken of their experiences, and throughout history it is possible to recognise bipolar type traits in the artistic, political and academic spheres. But what is it actually like?

I was diagnosed with bipolar in my late teens, in my first year at university. The diagnosis (and not I hasten to add the symptoms) have shaped my adult identity and experiences. This week I have been collecting answers to four simple questions from a range of people who have bipolar, to demonstrate the range of experiences out there, and some of the things that help.

The first question I asked was ‘what impact has bipolar had on your life?’

For me this is important because my experience is very unusual. I took antidepressants in my last year of school, which when I arrived at University and took the control of living at home away helped to induce hypomania.

I was already aware of my mood swings, and studying biomedical sciences. I went to the doctor and said I thought I had bipolar, and he agreed. I met a superb psychiatrist via student health services, which were on campus and part of the university. Because in my extended family there were at least two people with probable bipolar a working diagnosis was quick.

My school and university experiences were coloured by mood swings. I cycled rapidly between deep depression and hypomania. I ate too much and drank too much in part because of the medication and in part because of anxiety and became very obese. I had some embarrassing moments of drunkenness, self-harm, obnoxiousness and accruing of debt. I repeated a year of study, which turned into a year of intense involvement in the student union movement and student mental health campaigning, which led me to my career.

By the time I felt properly back on an even keel seven year later I had accrued nearly £50k of unsecured debt, which it’s taken a decade to pay back. So I don’t have a house, or a postgraduate degree which I’d have liked and which would help now. But. I had my life. I avoided hospital, thanks to my psychiatrist, brilliant GP, online peer support and carefully nurtured insight. And because I found a sense of purpose, self-esteem and a job through volunteering.

My parents were unquestioningly supportive, financially, emotionally and practically. They even donated blood for a research study. They resolved to push me through my degree at whatever cost. I am lucky they were able to. I know just how lucky now, given what I know now about inequality, mental health and what happens when you don’t have support.

Bipolar shaped me. But never broke me. Nowadays all I have left is a ghost of an identity formed in a diagnosis. Sometimes my self-stigma or real stigma inhibits my career. Sometimes casual disclosure leads to awkwardness. When I run into people who knew me then it can be tricky.

But. I am recovered. Nevertheless  I’m constantly probing for where recovery ends and post mental illness starts. I am so aware of how atypically bipolar I am and how lucky that makes me. Every time my heart swells with empathy for a fellow traveller in trouble, or dead too young, I thank my stars. And commit to continuing the work I do.

Other people I spoke to had a range of views. Bipolar can be cruel, as Brian, a man in his forties describes:

“My first major episode had a big impact in my life, I lost my job, my marriage broke down, I struggled with relationships and lost any sense of who I was. At times suicide seemed the only real option. Fortunately, recovery and relearning about myself has brought its rewards and I have a good life today.”

Joan, a mother in her thirties adds:

“The impact has been massive. It disrupted education, disadvantaged my career, and decimated my relationships.”

Hannah, a woman in her thirties describes the need for constant awareness of experience:

“I’m constantly aware of it. I am bipolar all of the time. As someone who rapid cycles there’s a constant watch on mood, symptoms, strategies and warning signs. Trying to stay well and steady takes a lot of effort.”

Cait, a mother in her twenties talks about the ongoing impact of experience that started at a young age:

“It’s shaped my life because I became unwell in my teens, which resulted in me dropping out of school.  Becoming unwell at such a critical period in my life shaped my self-image, too- some of my behaviour was perceived as being very bizarre and as an adult, I do struggle with social anxiety. Episodes can be pretty destructive, and it means I find it very difficult to take anything for granted- no matter how well my life is going, I know I can get ill and it can be wiped out, as it has been many times before.  I put off having children for a long time because I was frightened of getting ill. 

The positive aspects are that when I started blogging about it, I tapped into an entire network of people who had felt the same, who were living with all, and it gave me hope. And there are feelings- just residual ones, but I feel them years later- of the invincibility and joy in some manic episodes, of standing on a hill in the sun and feeling alive, and I can still summon that feeling when I need to.”

Blogger Tanya added:

“I feel that having Bipolar disorder has been both a curse and a blessing. The negatives focussing on some of the more harmful actions I have taken as a result of the disorder, such as falling in to self-medicating habits which lead to addiction. Bipolar has provided some heavy limitations, such as having time off work and needing rest when episodes come along unpredicted, and not being able to look after my young daughter when it is in full swing. However, in a good light it has also separated my true friends and family from the false ones who did not care for me in the first place. I am very lucky to have a close circle now, each person I know truly value me, and see the real person that I am through the disorder.”

Blogger Anna said:

“I’ve had numerous admissions to hospital and crisis houses, taken overdoses, cut myself, and put myself in very dangerous situations when manic. All of those things have been awful, but they don’t even begin to compare to how soul-destroying it has been to have the life I once believed was a given taken by bipolar. As a teenager, I was a high achiever. I was destined for academic and occupational success, but I haven’t been able to work since I was 18 and I had to drop out of university because I was too unwell. Being unable to have that life has forced me to find other ways to feel productive, valuable, and successful. I volunteer, study part time with the Open University (I will finally get my degree next year. I started university in 2009!), and earn a small income from blogging.”

 

What have you learned as a result of your experiences?

Living with bipolar, often for years, teaches you a lot. About yourself, about mental health services, about medication…and sadly often about stigma, shame, and discrimination. I’d say for me it was a key driver for learning about me…but also a red herring as I feel I vested too much of my own identity in clinging to the life-raft of the diagnosis as an explanation of my life in my early twenties…again though, there are a range of perspectives:

Brian talks of the possibility of recovery – living a good life whether or not you have symptoms-

“Despite what others may tell you, or what you might believe, recovery is possible. I never thought I could be a worthwhile human being and have something meaningful to offer. That’s just illness speak and the effects of learned stigma. It doesn’t need to be that way.”

Anna points to learning about what is important in life:

“I have learnt that I am more resilient than I could have ever imagined. I have discovered that there is more to life than getting a degree or a good job. I have learnt that I have amazing friends. They have never stopped believing in me, even when I couldn’t believe in myself.”

Hannah draws on a theme park analogy to talk about assembling your team of helpers:

“I feel like I’m riding a constant rollercoaster of moods. There are people who are too scared to come in theme park, those that will hop on ride with you and those that watch sensibly watch in awe and sickness from a distance minding your bags. All of those people have a valid and useful part to play in your life.”

This is a point echoed by Cait:

“Having support around you is important, because left on my own I would have been in a much worse situation. I have learnt how important it is to reach out to others when I am unwell, even when I don’t feel like being around others. I make sure at least someone close to me in my life knows when I am feeling unstable, whether that be a family or a doctor. Going through episodes alone has had some disastrous consequences in the past.”

Hannah points to long experience of episodes to reflect that mania is the most dangerous state for her. This can be a challenge when many believe mania to be exciting. I have even had people ask me how to get there:

“Depression can feel utterly shit and the worse in the world. But mania is the dangerous one.”

Several people reflect on the need to make peace with actions taken whilst unwell:

“Getting a diagnosis was a relief in that sense, because it helped me to articulate to people close to me what was happening, and they could help me and understand some of my odder behaviour when I wasn’t well.  That there is very little that is irretrievable, even though it doesn’t feel that way at the time. I also believe there is great value in forgiving myself for actions that may have taken during my highs or lows, it helps me to move on to stability much quicker than dwelling on it.” (Cait)

Joan was right to the point:

“Faith, hope and love, the greatest of these being love

 

What do you do to keep well?

Keeping well when you have bipolar is an interesting concept. For some it revives exclusively around managing moods. For others it means fitting life around moods. For me, and others like me who are deep into a recovery that seems to be holding, it’s about keeping an eye, and investing in the things that help us all boost our mental health.

For many, if not most people with bipolar, life and keeping well includes taking medication.

Blogger Tanya said:

“The think I most prioritise with keeping myself well is to be strict in taking my medication. Missing doses or tweaking them without professional help can be devastating, even if you feel like you can handle it at that point in time.”

Again, I’m going to buck the trend and say I don’t take medication routinely. I took lithium for a decade, and then wanted, once I knew myself and had done my research, to try tapering off. That was eight years ago, and I’ve managed it. I didn’t it carefully, over two years, with support, whilst learning other techniques. I’d take mood stabilisers again if I needed them, but I don’t.

Cait agrees:

“For thirteen years, I took medication, but in the past 6 months, I’ve been trying to cope without it. So I have to be super careful, and alas, super boring. I don’t drink a lot, I have relatively early nights when I can. I try to reduce stress, which is tricky with a baby and a full time job, and I try to be honest about how I’m feeling so that I can get support when I need it. I keep quite a close and open relationship with my GP and psychiatrist, and I have a, ” advance directive” that details what I want if I become unwell.

Bipolar can also be triggered by trauma, or other life events and sometimes part of therapy is addressing underlying concerns to get someone to a point where they can start to see a life worth living.

Anna said:

“I had seven years of psychoanalytic psychotherapy (one of the few lucky ones who get this on the NHS). I believed it not only saved my life, but helped me actually have a life. Medication was an important stepping stone to get well, but I don’t think it is the only way to manage bipolar. I chose to be un-medicated for 18 months and did very well but, after a recent severe episode, I have decided to go back on medication, at least for a while”.

Self-Management, either formally in course MHF or Bipolar UK run, or less formally can be key.

Hannah has a rigid menu:

“Monitoring. Mood diaries. Medication. Management plans. Making and keeping a routine. Being me.Doing one thing that is the same every day. Doing one thing that pushes me out of my comfort zone every day. Seeing a particular friend every Wednesday for lunch. No matter what happens or how I feel that lunch commitment is there. And there’s someone who can objectively see my mood shifts over time which is a valuable insight and I have a marker to see it too. We have a natter but whatever we are going through, my bipolar woes, or her job hunting, house move or wedding planning. We know that we have that guaranteed time and space for each other.

You can monitor mood via downloadable or printed mood diary charts, or through several apps and web resources. Personally, I monitor my moods consciously if I am worried, unconsciously otherwise, and I take have taken antidepressants for a year or so at a time when I feel I’ve needed extra help. I try and practice mindfulness daily, and remain wedded to my work and its importance to my identity.

Besides this, people say, unsurprisingly that they keep well by doing things that help everybody keep resilient and mentally healthy:

“Routine is also important in bipolar disorder; I try and find the right balance with sleep, work and my social life. I can track the majority of my relapses down to a shift in routine or a major life change.” (Tanya)

Balance is important. I make time for family and friends, time for me to relax and have fun, and I aim for at least 7 hours sleep a day.” (Brian)

“The single most important thing I do to keep well is manage my sleep. I was diagnosed at 17 and spent my early twenties doing everything a person with bipolar shouldn’t (staying up late, drinking too much, taking drugs, taking on too many responsibilities or projects etc). I learnt what to do to keep well by doing everything wrong! Other things that help include talking to friends, and doing things that increase my self-esteem and help me keep a routine (such as studying and volunteering). “ (Anna)

 

What single piece of advice would you give a person just diagnosed?

Based on all the insights shared we’ve come up with the following list…but it’s not exhaustive. Speaking personally, I’d say “Hold on. It gets better. Different. But better…”

The combined tips list includes:

  • Find out about bipolar. Use trusted web resources or library books. Learn about treatments. Research medications. Know your options. Talk to people.
  • I know it’s tempting to hinge every experience and feeling you’ve ever had on the diagnosis, and to an extent, it’s a very natural thing to do, but you’re still you, you still have your own feelings and thoughts, and your own language and perception of your own life. Try not to adopt an illness identity. You are you. Not bipolar. Get to know yourself.
  • Throw yourself into treatment and get well…learn some good strategies for taking care of yourself, but remember there’s a person under the diagnosis- there was before you were diagnosed, and there will be after. Bipolar might change you, and that’s OK. Recovery doesn’t mean cure, but it can mean lots of new opportunities.
  • You and your doctor are equals your care. In the consultation room you bring the real life experience, your own personal circumstance (family, work, interests) and knowing what works for you. Your doctor brings years of valuable knowledge, study and experience of treating others. Work together. Respect each other. Ask tough questions and expect tough questions.
  • Reach out to other people with the diagnosis, whether that be through a community support group or via social media. It’s easy to feel the shock of isolation when you are first diagnosed. I believe that hearing other people’s experiences and connecting to those who are in the same boat can not only help with accepting the illness, but with also providing sense of ‘normality’ within the community.
  • Find out about bipolar, join a support group and learn from peers how to live well. You need to work out what works for you. Learning about this and exploring what helps you ideally with people on a similar path can be very empowering.
  • Work with bipolar rather than against it. Pretending it doesn’t exist won’t make it go away. In fact, it will make it so much more difficult to control.
  • Try to learn from everything, good and bad. Every experience will teach you something. Prepare an advanced directive/advanced statement that can serve your interests when you aren’t able. If you are in Scotland, make sure you have a Named Person you trust in case you are detained.
  • Build a circle of support. Friends, family, professionals, community resources…all can help. If you can build a wide circle of support you won’t feel like you are laying too much on any individual. Well you might. But you won’t be.
  • Put safeguards around managing your money when well to protect yourself when too low to motivate and organise yourself or too high to care. I’ve always found banks and creditors very helpful when I tell them that I have bipolar.

 

With grateful thanks to all who contributed to this piece…your names have been changed to preserve your identity.

Bedlam, Stigma, and Twitter as an Indicator

15 Nov

Over the past three weeks I’ve been watching Channel 4’s ground-breaking new documentary series Bedlam. I’m going  to concentrate in this post on the way the series has been followed on social media, especially twitter, and the lessons that might give for anti-stigma work. Other bloggers have concentrated more on the content of the series.

In the three programmes so far we have seen very different contexts of mental health and mental health services bound tightly together by a kind of high definition authenticity which has shown the reality of the situations people face, and challenged both the public, and people with lived experience of mental ill health.

Personally I applaud the boldness of the series, and the courage of the participants and recognise this as a leap forward in what is offered in mainstream TV about mental health. Documentary is supposed to shock and awe and this has, in unexpectedly painful ways for me. It showed reality in rawest sense. The big question is, has that shock and awe moved us on in stigma terms, or upset and shocked too much?

I watch a lot of mental health television. Often it’s with an eye towards how the programme does in relation to addressing stigma and discrimination, and with many programmes historically not doing well in that regard, the experience has often been uneasy from my perspective of someone so steeped in mental health personally and professionally.

Dual Screening – Twitter feeds and TV Together

The programme uses and promotes the hashtag #bedlam , openly inviting ‘dual screening’, or following the programme and twitter feed simultaneously.  It has been very interesting to take part as a ‘dual screener’ viewing the ways in which the programme and the tweets have interacted to emphasise points, to disagree, and to distress in different places. To draw a  science analogy, it reminded me of constructive and destructive interference, where colliding waves can either cancel each other out, or increase in pitch.

With the first screening of Bedlam, my heart lifted and then roared with empathy and pride at the courage of the people telling their stories, and the way that the programme addressed the more difficult areas of mental health to communicate to the public, such as the effect of unwanted intrusive thoughts. The way the stories were presented seemed different for me too. The programme didn’t seem to be highlighting an individual or individuals for entertainment or scrutiny, but more I felt telling a thematic story with the assistance of several personal stories.

In the first week the majority of the twitter stream was positive, with empathy and pride expressed by those with lived experience, disclosures of personal experiences that were similar, and relief and delight that these topics were being featured. Of course, there were also some heartless and unpleasant contributions. The stream felt positive though, and I would describe it as a ‘safe space’ with a strong vibe towards collectivism against stigma.

The second episode of Bedlam was different. Showing the reality of acute assessment wards and crisis was always going to be a challenge. What the programme did was bold and real. But like the realisation that HD cinema meant a distortion in perception due to ‘hyper-reality’ of scenes, I wonder if a similar effect might have been in play with the second programme. I found it deeply distressing. Distressing on an empathic human level and distressing as a person who has lived experience as both a service user and carer. It was distressing enough that I felt the need to get a hug, smile at my baby daughter, and watch a cooking programme to help me step away.

Last week the twitter feed had a much greater proportion of negative, offensive and discriminatory tweets. It had far fewer rallying cries, positive stories, and collegial empathic disclosures. In week one it was a safe space, in week two, in my opinion, anything but.

Many of the frequent twitter commentators on mental health decided not to comment on the programme, or said that they weren’t going to watch because they anticipated it being difficult.

The main stories featured included Dominic, a man with teenage children who had a bipolar diagnosis and made two suicide attempts during the period covered by the film, and Rupert, an imposing black man who was reportedly being assessed ‘because of being more of a danger to others’.

Both stories were candidly told, pulled no punches, and featured both the complexity and dilemmas faced by patients and by staff in assessing and managing risk and the decision to detain or not. Importantly the stories also showed the impact on family in Dominic’s case. Critically, at the end of the programme all of those featured updated sections, where all had made progress, but none were ‘cured’, showing clearly the reality of recovery as a journey for most. That said, the word recovery wasn’t used.

The response on Twitter to these stories was highly polarised. There were some lauding the courage of staff, Dominic and Rupert, and their families. There were many expressing deep interest in mental health, saying how important the piece is, or expressing sadness at people’s experiences. And there were many tweets expressing highly upsetting stereotyped views about dangerousness, fear, competence, and capability.

There were highly offensive racist perspectives about Rupert, and very difficult and judgemental tweets about Dominic. There were also a lot of responses decrying these.

Most upsetting of all for me was that there were increasingly tweets that showed that the programme was disturbing to folk with mental health problems watching:

“It’s basically inevitable that my bipolar will land me in a psychiatric ward one day and watching #bedlam makes me so nervous about it”

“Watching #bedlam with my folks is making me feel very horrible”

The third programme, shown last night, discussed community mental health, concentrating on the experiences of three people with long-term mental health problems, with a particular emphasis on the boundaries between treatment home or in hospital. The personal stories were strong, and it was good for instance that one person who was shown being sectioned in the programme, was later shown at home and markedly improved. There were still a lot of ‘sharp edges’ shown and not placed in context.

This was very well picked up on the twitter feed, which was different again. With last night’s episode, I would describe the commentary as more critical of the depiction of mental health treatment shown, than of the programme per se.

There was a lot of discussion for instance about the decision to concentrate on medical interventions and compliance with medication. Several people felt that there was a missed opportunity to feature recovery and hope more centrally, and to feature self-management. Critically, some also felt the case studies used increased social distance, making a distinction between ‘them and us’, potentially contributing to ‘othering’ of people with mental health problems who were described at one point as ‘your neighbours, living among us’.

There were far fewer out-and-out discriminatory tweets this week. What there was though was a consistent outpouring of ‘this makes me sad’ tweets. Empathy, rather than sympathy is what anti-stigma work needs from people looking on.

What could this mean for anti-stigma work?

In terms of what programming like this might mean for anti-stigma work, it made me think. Certainly there has been a huge step forward in the past eighteen months in willingness of mainstream programme makers to address mental health and show programmes. There is clearly an appetite to learn and move forward, which anti-stigma programmes and those with lived experience should hope to benefit from. We need to learn by doing, and gauge opinion and form ideas for further programming on the back of knowing what consistent strong programmes does for stigma. We do know though from evidence in arts programming that care must be taken about reinforcing negative stereotypes.

It has been interesting to see the commentary in the twitter feed mature with the passing weeks, and for me there is a research imperative to see whether this kind of instant discourse is helpful in anti-stigma work, in terms of the messages, their reach, and the effect on the ‘silent reader’ of seeing what can be very challenging content without filter.

A key question for me remains how far the programme, in addressing some of the most complex aspects of mental health in such a raw way, addressed discrimination and self-stigma.

My instinct is that the programme will have opened many eyes, and the series as a whole will energise people to stand up and join a cause.

For some though, I suspect stigma and self-stigma will have been exacerbated. Certainly if the twitter feed is anything to go by that may be the case. The number of ‘mad, bad and sad’ tweets from some quarters is disturbing.

Can we play a percentages game like that with anti-stigma work? Is it OK to move some people forward at the cost of moving some people back? What are our ethical obligations in terms of consent and filming people in crisis? These are all questions we can only ask and answer in an environments where programmes like this get made, aired, and learned from.

Twitter is a microcosm. Like comments sections on newspapers and YouTube it draws people two have polar views. But people read it, especially people with mental health problems who because of self-stigma may seek negative reinforcement.

I would like to see large scale polling research around programmes like this, to gauge their effect on attitudes and behaviour. The anti-stigma movement could benefit from approaches taken in political campaigns around major speeches to gauge the effect on viewers. I hope that Twitter is only a concentrated view of a wider public opinion, but without data it is hard to know.

The other thing that occurs to me is that if we are going shift our anti-discrimination work to a rights based focus, we are going to need to learn that changing minds might lead to resistance from those whose minds most need to change. Perhaps we need to look after ourselves better, choose better which battles and discourses we get into to make sure we stay safe and strong. There is something I feel, and perhaps others with lived experience share. I feel the need almost to ‘stand guard’ over programmes like this, to watch out for stigma and engage it.  Perhaps we also need to understand better through research the effect of watching twitter streams and seeing live ‘opinions’ on self-stigma.

We have a lot to learn from other movements, where struggles for equality and rights often result in horrific backlashes even from the establishment…Stephen Fry’s recent ‘Out There’ programme on homophobia was gut wrenchingly authentic, and many accounts of the struggle for civil rights are disturbing to watch and no doubt trigger memories in the viewer.

Somebody said on twitter last night that ‘the programme wasn’t targeted at people with mental health problems’ and to some extent I think that’s true, it was a hard watch. But, if we want to build a social movement where empathy and compassion enable people to stand together, then programmes must bring together people more.

Bedlam has given much food for thought. There are huge positives, but also huge questions that only future programming, future research, and future engagement can answer.

This piece is written in a personal capacity.

Young People, Mental Health and Technology Innovation Labs (Part One)

10 Jan

This is an extended version of a blog post I wrote for Nominet Trust following my participation in the first of two Innovation labs on mental health and young people.

On December 10th I had the massive privilege of working at an Innovation Lab in central London, with fifty or so of the most innovative people I’ve met in years. The chance to combine innovation, technology, and mental health is never something I can resist. The opportunity to work with a mix of outstanding, articulate, exceptional and gifted young people and a range of tech people, problem solvers, and facilitators was both humbling and exciting.

This story starts back in April, when I facilitated a workshop day on behalf of Comic Relief, Nominet Trust and Paul Hamlyn Foundation to consider ways in which young people and technology people might be brought together to co-produce a set of prototype ideas for mental health and technology assets. That day brought together young people, three of the UK’s leading grant funders, and a range of third sector organisations using technology in relation to mental health and or youth work.

The conclusions of that day were taken forward by a smaller steering group, and, as any good prototype, tested and refined to create a brief for a tender, which Cernis, a collaborative of innovators, mental health and youth work people won, and shaped with the steering group into a two stage innovation labs process.

December 10th was the first of two innovation labs which will take forward first the thinking, and then the development of proto-projects that three of the leading funders in the UK will consider for further support.

The task of the 10th was the idea generation, creating a safe space for young people, tech innovators and youth work and mental health professionals to find, meld and illustrate concepts. Through a process of creation of character vignettes, and then story creation around them via discussing problems they might face and brainstorming solutions some 190 ideas were generated, and triaged. These ranged from apps, to websites, to service models…and lots of things that so far aren’t even on the concept map.

I had two roles on the day. First was my familiar work role of giving a ‘stimulus presentation’ to fire up passion and set the tone. The second was as official photographer, as part of the social reporting team.

In the introduction I wanted to try to bring together innovation, mental health and technology. In creating the conditions for egalitarian idea generation, everyone needs to feel they are bringing something of equal value, because nobody there is a passenger. I spoke about the value of failure and learning from mistakes in innovation, reflected against the often caustic role of perceived personal failure in the experience of poor mental health. I hoped that the young people would find the confidence to advance ideas, and that the pros and geeks would get a sense of what it is like to invest a fragile sense of self worth when you are out on an isthmus of land over a deep chasm of self doubt. It helps of course that I’ve been in both positions.

Before the Lab, I stayed with my parents in the town I grew up in. I noticed how small and narrow the roads are there, roads that when I was a child seemed like motorways. This is of course because my worldview has gotten far broader. I realised that it that it was twenty years since bullying at school nearly cost me my life (by suicide), and that actually, all that time on, I can now look the town in the face without feeling small. One of the things that helped me place in context the bullying that loomed so large over my identity as a teenager was the fact that when I got to University, and got online, I received and gave peer support to others struggling with mental ill health, and found people ‘like me’ all over the world.

 The web draws together communities of interest like nothing else. In the lab, and on the online community on Ning we have a whole room (literal or virtual) of people brought together by a common interest in three themes, all alike but different. To say it was a room of very different folk who were ‘people like us’ was an understatement. The team created a space where validation was a given, and therefore the barriers were down and exchange was free.

My final point was on identity, especially the fact that we all now have portfolio identities. It’s rare indeed now that anyone born after about 1975 has a single role in the domains of home and work. Many of us move seamlessly between online and offline, and between the professional role that pays us a wage, and other, complementary professional roles which involve voluntary work, innovation, and collaboration.

One of my roles there was as photographer, another was as a well kent twitter mental health hack, another was to highlight the way in which I can use my lived experience of mental ill health and recovery to highlight points of discussion.

Yet I was there as a representative of the organisation I work for, with that first, and all the others also in play. Somebody said the other day to me ‘in the game, but thinking outside it’, and that seems like an interesting framework.

People seemed moved by what I said, and the way that I said it, and we spoke about the way I have used my personal experience of mental ill health in my work. My experiences gave me a drive, and certainly my ability talk helped, but I had hard times learning the boundaries early in my career.   A decade into my recovery, I still have the drive and motivation, but the experience has muted and become one thread in a range of skills and experiences I have in my professional life.

At the lab though somebody asked me about whether sometimes not having lived experience of mental ill health can seem like a disadvantage in a group of those who do. This really got me thinking, and showed me that we had to take care not to inadvertently reverse stigmatise. I think there is always a place for the voice of lived experience, but when we are creating this kind of true equal opportunity space can it be the sole reason for participation? It is possibly doing a disservice to people who have relevant experience but don’t share, or those who don’t have the badge, but do have a contribution to make.

I think we all establish a set of identities, a personal brand as it were that has different hues and emphases according to situation. We are all products of our experience, our endowment, and our environments. Accessing and then utilising these experiences was what the Innovation labs are about, and it worked so well.

The other interesting thing today was the organised social reporting function. For years I have admired the European science/policy conference role of workshop chair and rapporteur, where you use the workshop discussion to formulate a summary to feedback. The social reporting function at the Lab was this, but it was also about capturing the feel of the event to bring in those not there, and to sustain those who were in the incubation period.

I am a really passionate tweeter at events, because I think there are ways to share what happens in the room with those outside. It reduces inequity, fosters interest, and breaks down perception of elitism.

video making

vox pops created by Blackberry

As part of the Innovation Lab we had a team tweeting, photographing, videoing and live blogging the event at #innovlabs and online. We were talking about technology, using technology, and dipping between online and offline like otters in a river. The social reporting team was drawn from all the constituencies of interest in the process, so we had young people blogging, funders tweeting (one for the first time) and youth work professionals making vox pops on BlackBerry.

Events, and designing processes to bring folk together really excites me, but because this process is to make a thing or things, it is even more exciting. Working with such brilliant young people is energising. Many of those stars of tomorrow, might yesterday have felt like they were nothing. A process like this might help them to seek and find what they might not have realised they had. That has an echo not just in empowering those young people affected by mental ill health, but also potentially in empowering young people who can’t see a way out of a learned helplessness.

It has reconfirmed to me that if you get the process right, and the people mix right, unconferences and co-production events always surprise and delight. But, as someone else said to me the other day ‘everyone can crack an egg but few can make a good omelette, even if they think they can.’  Pulling off the ‘swan effect’ of grace and beauty is a challenge, and the work necessary to create this process is only possible because of the front loading of financial support by Comic Relief, Paul Hamlyn Foundation and Nominet Trust towards investing in genuinely equitable idea development.

Since December 10th the hundreds of ideas generated in the first lab have been streamed into seven broad themes to enable discussion. A Ning forum of lab members and online forum members is discussing the idea ‘seeds’, and the degree of nurturing and ‘watering’ given to these by the community will help shape those which are taken from the incubator and on to the greenhouse of Lab 2 in February.

voting

voting on ideas

Already there are some ideas that have changed tack, some that seem to exist already, and some creative thinking, around for example whether the ‘urge for apps’ is always the best way forward. Just like the process of developing the labs, there is dynamic prototyping. What also seems to be happening though is that people are sticking with it, and allowing ideas to be flexed, remodeled or retired. Which is a hard thing to learn when often a small amount of hard won self confidence might be channeled in an idea. Hopefully this means that the self-confidence boost is in the permission to innovate, rather than the product of innovation. Which is a superb mental health boost all round.

Alain de Botton said something on Twitter recently about announcing something to the world before you had done it so as to concentrate the mind on achieving it. Well my New Years Resolution is to do much more of this type of tangible co-production of activities, and much less sitting in meetings thinking of what people might want.