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.

Retrospective Decade Perspectives

16 Feb

Ten years ago, Stephen Fry and the BBC made the groundbreaking mental health documentary ‘The Secret Life of a Manic Depressive’. It was huge in terms of stigma and awareness, bringing the private anguish of a hugely popular cultural icon onto our screens, and creating a new kind of factual mental health documentary.

This was barely five years into the first national anti-stigma programme in the UK, See Me. It was a short time after the ‘Bonkers Bruno’ headline. Public awareness of mental health was low. Public attitudes weren’t yet hitting and behaviour change as an objective wasn’t even on the agenda.

Personally, I had just left See Me, to work on a challenging international programme of mental health policy support. And, years into stability I was up for questioning my bipolar diagnosis and tapering of the lithium that i’d been taking for a decade, since my diagnosis in my first year at university.

I establish my adult identity on the meaning that ‘being bipolar’ gave. I was ready to adopt the identity, I felt it gave me a home in my skin, an identity to build on. I didn’t feel I had much else to do this with, common with many teenagers who experience mental health problems. I was bullied at school…I think that was the trigger for something that has a pattern in the family. Endowment + Experience.

Thing was though I experienced a lot of depression, my manias never really flew…hypomania, mixed states of frustration and bursting fizzing negativity and flights of spending…but no psychosis high. That means with an outstanding psychiatrist and a total commitment to lithium and when needed anti-depressant therapy I kept out of hospital and channelled my periods of boundless energy into campaigning on mental health.

A documentary about a hero of mine, exploring the thing that had made me me seemed brilliant. I’d worked for Bipolar Scotland, sat on the SIGN Guidelines Development Group, and lost friends to suicide. I knew what this meant to people.

It didn’t disappoint. It was compelling TV and it presented a compassionate, biographical perspective on the condition. It reflected the then prevailing view that bipolar was a lifelong condition, only controlled by nasty medication, and feared and sometimes secretly craved by people living it. We met some people living with bipolar, and saw the devastating trail it can leave. We also saw some hope, and Stephen’s example of what might be possible.

So I had high hopes last night. Ten years is a long time. About the time between first bipolar symptoms and accurate diagnosis as it happens. I was keen to see what had happened to the people involved. Stephen Fry has been through a lot since the last programme. I was keen to hear his perspectives on this. I was also keen to hear some of the other wider narratives…from those involved, from new people., and about the wider image of bipolar and mental health in the world.

So what has changed?

Bipolar has become a topic of regular discussion. Catherine Zeta-Jones, Kerry Katona…a host of others have come out. After a while some might say it became de-rigeur. Fashionable even. The term bipolar diagnose being used as an adjective….endearingly and as a form of insult.

I’ve heard the Fry effect discussed…as in ‘my family and friends expect me to be like Stephen Fry and actually I am not a genius entertainer, just an ordinary confused bloke whose life is fucked’

At the same time, mental health services have changed, with a shift to community and primary care services. The recovery movement has thrived, and has now begun to suffer from the hypoxia of austerity. How has support changed over those years? Stability is the goal in bipolar…how has austerity, changes in support availability, integration, personal budgets….an outcomes based and person centred approach affected people living with bipolar. I know from anecdotal discussion that for some…those like me who are articulate and privileged…life has flourished. For others…I know that cherished services that maintained a baseline have gone, and the future looks grim.

Self-management has transformed a lot of people’s ability to self-advocate and be experts in their care and treatment, using advanced statements and avoiding admission.  Drug therapy mainstays haven’t moved much…but atypical antipsychotics, new anti-depressants and anti-epileptics have at least expanded the options for those for whom lithium isn’t an option. Again, these are best accessed by people like me who enjoy privilege, who can use their web skills, pharmacology degree and literacy to analyse and quantify moods and suggest treatment options. How is this reaching populations at huge risk, to prevent relapse for those without the assets to bring?

Anti-stigma work has transformed, globally. In the UK Time to Change and See Me have made steps in awareness raising but we are still in the infancy of changing behaviour, creating equity, and a society where as people with mental health problems enjoy our full human rights. When I ran the media response at see me we were writing to people and emailing. Social media snowballing in the last decade has changed the face of anti-stigma campaigning, but also the face of mental health peer support.

Peer support online changed my life and got me to the place I was in 2006. I actually first used the internet for support in 1996…twenty years ago. I was keen to see how that was portrayed in the film…after all even notwithstanding this week Stephen Fry is an ardent social media and technology user and actually when he is unwell or sensitive that reflects in his self-editing of his presence there.

Many workplaces have welcomed or welcomed back people who have bipolar diagnoses. It isn’t automatically a life sentence. People adopt, have fertility treatment, practice medicine, set up and run successful businesses and continue to excel in creative pursuits. My own ‘sentence’ was commuted on the day my GP said ‘we’ll mark your bipolar resolved’. That said as I have gotten more senior in my career and gone for leadership roles some have advised me to tone down my lived experience or to stop reminding people. It was the nuclear fusion that started my career. It’s now part of the brickwork, but only a part.

In the science department we’ve begun to unravel the genetic aspects of bipolar. We’ve come to understand how bipolar depression differs from unipolar depression in symptoms, severity and response to anti-depressants. Bipolar is a mental illness where biology and genetics is closest to the surface of understanding. I’m all about the social determinants but in this case, we need to understand more to be able to help more.

Where am I ten years on? In a senior position in a major charity, enjoying work. Father to two children under three. In ten years I’ve seen and faced some things that should have caused me to relapse if I was a real bipolar…there…again I am sneaking diagnostic hierarchy in. It took me three years to come off lithium in steps. My psychiatrist said he’d see me on the ward. He didn’t. I was discharged from secondary care in I’ve been off lithium for nearly all of those ten years. I’ve never been admitted. I’ve asked to start antidepressants three times, taken them for a year and come off. I’ve not had concerning highs. I am not anti-meds. If I needed Lithium I would take it again tomorrow.

My GP marked my case resolved and I felt oddly bereft. Now it only comes up on rare occasions when I see health professionals who query why I am not on meds or seeing a psychiatrist (like at maternity booking appointments)…or when I mention it. I am so aware that I am very atypical and very lucky.

What hasn’t changed?

Bipolar still kills. It kills by suicide, it kills by loneliness, it kills by substance misuse, it kill by recklessness, it kills by comorbidity…

Medication side effects lead to obesity, diabetes, endocrine issues, kidney damage. This, and lack of self-care and insight mixed with stigma can lead to diagnostic overshadowing, cardiovascular disease and death as soon as 21 years earlier than the rest of the population.

75% of severe mental illness starts in childhood, and bipolar diagnosis in young people is there…but personally I think too many young people and parents want a label that I know from experience is sticky. We need to support self-management with young people, to address moods in the hardest of transitions. At the same time we know that transitions like parenthood and retirement/ageing affect bipolar. Years ago people like us didn’t do those things. Now we do. What does that mean?

So did the programme go there?

Partly. It touched on co-morbidity and it certainly showed the harsh reality that for many people bipolar is a long-term, corrosive, unpredictable roller-coaster that challenges a person, there supporters and services.

But. I felt, personally it missed the chance to reflect the rich range of experiences that people have, from the reality of mental illness in multiply excluded populations, to the experience of those of us who live well without medication, those who work in ordinary jobs delivering mail or in your office, or the kind of hope that creativity and connection with peers can bring?

Where was the contact theory…the range of people with whom you could connect? There was a lot of medical model talk about medication being the only way. There was a deal of charity model talk about the challenges people face…pity inducing. There wasn’t much social model. Not much of the ‘I am out and proud and life is sometimes hard, but I am doing it’. If the contact and impression it makes is that people with bipolar need sympathy, need to take their meds, and if they are really lucky can sometimes work…i’m not sure that achieves what we need to in terms of rights. Even if for many that is true.

I can’t help but wonder how i’d feel if i’d just been diagnosed, or if my 18 year old self had been watching with my loving parents who got their heads round it and got stuck in to trying to guide me.

Stephen Fry has been a hero of mine for years. Robin Williams was too. I guess here Stephen was the ‘living well with symptoms’ person. But he’s distant from many of us. Too distant. Mental health TV has moved on in ten years and I don’t think this moved far enough with the times. For me Jon Richardson took the crown of celebrity self-discovery and peer connection with the OCD programme he made for channel 4 in 2013. Despite my hopes Stephen Fry hasn’t retaken it.

I don’t know if i’m over-reacting. Lots of input on twitter last night was positive. My concern was that yes, it was an interesting programme.  But did it accurately reflect the issues? In a poll of people with bipolar for Mind, twitter followers were asked of the programme was accurate. of 356 responses 62% said it was accurate enough, 38% said not accurate enough. Which for me is about right. 38% of people with bipolar wanted something else. I’m one.

I’d love to see a major piece of work on a decade ‘retrospective’ on life with mental illness. Bipolar and otherwise. How has life changed? How has it stayed the same? What does that mean for the way we talk about mental health, the priorities we set for services and policy, and the TV we make…things to ponder.

published in an entirely personal capacity

Walking a Mile

6 Sep

Thursday was a very long day for me, starting in the City of London listening to the Lord Mayor discuss me talking health in the financial sector and the need of the corporation to support efforts to address stigma.

Fast forward 12 hours and I was glad to have come back to Edinburgh for the first See Me ‘Walk a Mile’ event.

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When Chris Young started his mammoth walk around the edge of the UK it was with the express purpose of using contact to open conversations, and measure the impact of these in part by whether or not people were prepared to offer him shelter and food. A clever idea and profoundly simple. This simple idea caught the imaginations of the See Me team, and they have worked with Chris Young to develop this format of walk. The new Lets Walk a Mile site will catalogue. support and promote people who want to walk a mile, as it says on the tin…challenging stigma one conversation at a time. See Me have worked with Chris, without colonising or annexing his idea, and that’s very important for a national programme of action the seeks to add value, voice and volume to the efforts of people across communities and backgrounds.

The canon of evidence based anti-stigma work suggests that three approaches have the most promise, when led by people with lived experience.

These are:

  •  Contact: Where hearts and minds are changed following contact with people who tell their story of mental Ill health and directly challenge beliefs.
  • Education: Where efforts like training and awareness raising increase availability of facts and the addressing of myths.
  • Protest: Where collective action creates an esprit de corps and a movement which seeks redress or action.

The most potent of these is contact, and it is there that both the renewed See Me programme and other global anti-stigma initiatives now rightly focus. Walk a Mile was about conversations, so contact in a very potent format.

It wasn’t about protest, but there was an air of assertiveness and pride in the group on the walk that felt like the essence of marches and pride events I have been part of. It felt like the start of something, like a proto-pride, a sense of awakening that might one day turn into self-acceptance and equality.

It wasn’t education…but everyone learned, whether through the conversations had or through the ability to have conversations with strangers, peers and people they’d never feel equal to or able to approach.

See Me has over the past 18 months sought to galvanise a social movement to address stigma and discrimination, both taking on a human rights approach and elucidating this in the field. Critically the programme is now engaging and taking on the spectre of self-stigma, the corrosive internalisation of negative stereotypes.of mental health that we can give headspace to, especially at our most unwell and when kindled by everyday discrimination.

It’s a tall order but this felt like another major step on the road. I’ve been to press events before that seemed contrived. This wasn’t. It was authentic. I even felt comfortable donning a brand T-shirt and whilst i’m always an enthusiastic supporter of the cause, I have to admit that being branded doing so has been known to make me squirm. My colleague Andrew Eaton-Lewis captured the spirit well for the SMHAFF website

The press were there to cover what we were doing, we weren’t doing what we were to hook press. That’s where we need to be in mental health and the media. Making news, not begging scraps. Even as we stopped for photo calls, the blethering continued and people took their chance to find new walking partners or introduce their walk buddies to others. It also gave the chance for tweeting and selfying and the rare opportunity for ordinary people to ask Scottish Government Minister Jamie Hepburn questions. I met my new MP there…and spoke to people from all backgrounds.

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Chris Young and Jamie Hepburn MSP receive instructions from the press corps photographers

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As walkers assemble and pair up

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Sarah Boyack MSP wanted a photo with the banners for a blog piece she’s going to write

On the walk I started with Labour MSP Sarah Boyack, moved on to a conversation with a lady bereaved by the suicide of a loved one, had a few words with Chris Young and the Minister before joining a service user from Stirling to talk opera singing, dogs and self-directed support. I finished with colleagues from the Scottish Recovery Network. Even only as as walking networking event with no power differentials I’d recommend it. It was great to see young people, older people, people from all backgrounds there. Our movement can seem a little insular at times and whilst there were familiar faces I was very pleased that there were many strangers too. We need people to refresh and challenge the movement.

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Selfie sticks and Periscope allowed the walk to be broadcast live

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Young and old were there…key for our movement to grow and thrive

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Edinburgh Tenants Federation catch up with Sarah Boyack

I particularly enjoyed the event because it allowed me to be safe and out in terms of having a blended identity. So often I am either a senior manager in a national charity, or a photographer, or a person with lived experience. Here I could blend and blur without fear, and in quite intimate conversations in public.

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Chris catches up with the minister on a key issue

Chris Young, and others in the movement are examples of people who have said ‘why not just do it’. It’s brilliant to see, and something I am trying more and more to do. Sometimes we have it in us to start organising and changing the world, like Chris, or other community champions in mental health. Sometimes it is as big an achievement and as strong a blow for self-stigma to get up and have one conversation, or send one hash-tagged tweet. It all helps. 

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The Royal Mile was full of chat, gesture and debate


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At the end of the walk, in the shadow of the Parliament, people had a chance to reflect on the walk and recharge their batteries.

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As I headed back to the station, I found two walkers still chatting, and bringing in passers by with offers of chips…

 

Personal Mindfulness Reflection

27 Aug

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I  have been brewing a big piece on mindfulness for a while. Disclosing my practice of mindfulness in the mental health world has been similar to disclosing my mental illness in some ways. Some people have been full of the ‘oh mindfulness is a individualisitic fad for middle class iphone toters’ and others have been all about the ‘its a new panacea’. Some people even called it wankfulness. I might even have been one of them. Until I found a way to use it.

I’ve had an interesting journey and a few months ago I was asked for an interview for a book that’s being written by a friend. Here’s the long version of what I said.

How did you first get into mindfulness and what was your reason for doing so?

I have been deliberately practicing mindfulness for about 9 months now, but I have come to realise that it is actually something I have been passively practicing for many years.

Mindfulness has been a big part of navigating me through a life changing couple of years. It’s no surprise then that I am a big fan. At the same time I recognise that there is a real risk when you are up close or invested in something that works personally, you can come to believe in and advocate for that as a solution for everything.

I should preface this by explaining that I am acutely aware that I have a large amount of privilege. Yes, I was very badly bullied at school which had a big effect on my mental health, and yes, I have a bipolar diagnosis and a lived experience of using services. But. I was raised in a loving home in the south-east, securely attached, with white, middle class, male privilege. I’ve adopted technology, got a degree, got a well-paying and secure job, a social network, a place to live, a loving partner and a family. Whilst there are things in my life that challenge me, and quite extensively so, my protective network is now strong and my baseline mental capital is good.

A year ago I had been enduring an awful year of recurrent infections, lack of energy, and questioning of myself. We’d welcomed our first child, and I was at a key phase of my career with so much happening. I came to recognise the heralds of impending burnout, both acute, and ironic given my work on workplace mental health and stress. I was mentally like a fibrillating heart, in need of a shock.

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I am passionate about mental health, social justice and making a difference. Like many in the voluntary sector I often find I have no off switch, and that the solution is to dig in and go harder. For years I devoured opportunities to do more, prove myself to myself, show the bullied teenager I once was that carrying on was worth something, and to push boundaries. I built my professional persona on the back of the validation being able to use my lived experience gave me. My work came before myself, and most other things.

In May 2013 I became a father, and the axis shifted. I realised that I had been investing almost all of my non-work time in personal resilience building to mitigate the effect of so much work. Interesting, exciting and stimulating work. But work nonetheless. Having a child pulled on my reserves of mental and physical resilience, but was a wonderful reason to force a reframing, particularly when we planned a second child fairly quickly and we learned our second was on the way.

I’ve always enjoyed solitude, and reflection time. My photography has been a way to observe and be in the moment. Sometimes if I am honest it’s an opportunity to hide in plain view. Looking back I’ve realised that in times of stress I’ve always sought an opportunity to be alone and in the presence of something on which to focus. Rain falling, waves lapping, the Manic Street Preachers loudly in headphones. Or on tough days several packs of Jaffa cakes.

I was aware that mindfulness was a thing. I knew there was an evidence base. I was open to the idea, but never had time to commit to doing a formal course. I was also sceptical about the dilution of Buddhist principles and the adoption of these principles for managing and normalising individual distress on a personal level, as opposed to addressing the circumstances in life that lead to this

I realised that I had to find a way to create the space and time I needed to manage the things I wanted to manage to have the life and career I wanted. I needed to improve my fitness, so I started walking the length of Princes Street in Edinburgh in the morning and after work, and walking at lunchtime.

I read some of the mindfulness evidence, some of the critique, and some of the workplace mindfulness books people like me buy at airports when on business trips. And it made a certain amount of sense. I started using the Buddhify app to try mindfulness exercises designed for city life and for walking, and found them fascinating, and compelling. I found an ability to use the dead time in the day not to consume social media but to be in the moment, reset and renew.

The bit I was still struggling with was the spiritual, the sense of connection, or metta as it is known. That is arguably the bit that is most elusive in mass market mindfulness. I’ve always been generous and empathic but wishing strangers well seemed contrived.

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Then I got a major jolt. On December 22nd 2014 we were leaving the office in Glasgow for the Christmas Party, standing in the foyer on George Square when the bin lorry crash unfolded, right outside the door. Having spent years as a first aid volunteer, I knew I was likely to be able to help. So I went in without a thought. There were several of us in that junction rendering emergency first aid for about ten minutes until official responders arrived.

Those minutes went by in like slow motion, but somehow my consciousness expanded exponentially. I could see options, actions, people, and consequences laid out like a carpet. I could see death, life, shock, compassion, and a city rising in shock and solidarity and I could see it all at once. Most of the usually hidden aspects of humanity were there. All in the space of a few moments.

For that day I lived moment to moment, in those moments. I genuinely believe that the practice I had started to allow me to recognise and accept how I felt moment to moment helped me contextualise and manage that trauma. In the days that followed I used the techniques to allow and accept feelings as they came.

Weeks later I realised that I could see the part of mindfulness I had been missing…the power of the moment, the sheer volume of what it can contain, and the sense of connection with others and the world it can create. But for a few metres, or a minute in time we might have been hit. But we weren’t. I felt able to see that and accept it.

I realised that the surge of humanity I’d seen reaching out to those hurt, confused or dying was what the metta stuff was about. Being connected, being part of a world. I remember feeling compassion not just for those injured by the crash, but also for those professionally trained and not, who stepped up. Members of the public turned their backs to block the view from others, people came forward to escort distressed but uninjured people to safety, two young St. Andrews First Aid volunteers waded into a major incident their training never prepares them for.  When I saw myself on the front pages of the papers rendering emergency first aid I saw the moment, but from another viewpoint.

There’s a sense of metta about Glasgow as a whole. The city responds in solidarity to tragedy like the crash, the Mackintosh Building fire or the Clutha helicopter crash. It responds to celebration too, as we saw with the Commonwealth Games.

When I recognised the face in the papers of the person I tried to help, I felt able to wish their family well, to feel empathy, but not to founder. I thought it would undo me to know the person’s name and background. It was uncomfortable, but I was able to take it in. The next time I tried a meditation involving setting aside the personal narrative and focusing on altruistically wishing strangers well, I found it worked. I realised how self-absorbed I’d been and how jolted I’d been by what happened on that day in Glasgow.

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Distilling it down, mindfulness has helped me in a range of ways:

  • Self-Awareness

I have become aware of the extent to which I was self-absorbed in my own narrative, needs and on occasion negativity. I’ve been able to use mindfulness techniques to help manage my energy levels and modulate my relationships at work especially in times of challenge. It’s made me more deliberate and improved my decision making and strategic thinking by enabling me to non-judgmentally listen to others and examine my motivations.

  • Gratitude and Failure

I realised how much I’ve taken for granted. I’ve stopped buying things to make me feel happy and realised that a free day in the garden with my family matters more. I’ve realised that what I have to offer them is enough, and that often at work what’s good enough is good enough. I’ve learned to fail, and to enjoy change, and the possibilities it brings. I have become less brittle and more resilient to the winds that blow.

  • Self-Care

The opportunity to do meditation when walking, travelling, or sitting outside has increased my level of physical activity, has forced me to take lunch breaks and breaks in the day, and pulled me away from working al-desco or using social media at lunchtimes.

  • Compassion

Practicing metta techniques has increased my conscious compassion towards others. I have noticed that I am far less judgemental, even internally, and more prepared to notice and acknowledge other people’s states, positions and motivations without rising to bait or responding defensively. That has made me more level headed at work and at home, and a better manager of people and crises.

  • Resilience

I have found a way to reorganise and reframe my work life, and delight in the fatherhood of now two small children. I’m sure that mindfulness, physical activity and time away from social media and consumption/spending have helped that personal resilience. I don’t think that offering wholesale resilience building is an alternative to addressing challenges but at the same time, we all have challenges to address, and strategies for doing so are useful if they can become reflexive, as this has for me.

  • Connectedness

The evidence tells us that spirituality, something to believe in, is good for mental health. I’ve always admired people who have religious faith. It’s never worked for me. But in feeling a sense of connection to others and the world through meditation I’ve begun to understand what secular spirituality might be and why a sense of place in space and time might help mental health. The things that happen are the only things that could have happened and life is a procession of moments. I’ve come to feel this all the more through mindfulness and the daily photo blog I have done for five years. I can bring myself back to that moment for almost every picture and orient myself and see progress by seeing two images.

I can’t be sure mindfulness did this. It was probably a mixture of things. If I’m honest it helped me reconnect to the things I had in life…and my assets were and are strong, I’d just lost sight of them. This new sense of control and mastery was always there, just often unattainable because of background noise and distraction.

I wonder therefore how it would have been if actually my assets were less tangible, if focus was my enemy and not my friend, if the life I was forced to live was often intolerable and if I couldn’t give a toss about birdsong in the park for the gnawing hunger in my belly. At the same time, people like me also deserve to be happy (there I said it), and the growing empathy and sense of connection mindfulness can engender may well help in changing wider priorities so it is easier to address inequalities and reach out compassionately to others.

Mindfulness has become an important basis for a variety of treatments. What do you think has led to that being the case?

I think several factors probably contributed.

Firstly mindfulness works in terms of helping people whose thoughts are chaotic to bring a sense or order, peace and calm to their lives.

Amongst the early adopters of mindfulness practice in the west were people who worked in the healthcare field and who saw the potential therapeutic benefits, and developed those. Areas like pain management were early adopters in the mindfulness for health field and these areas have strong links to mental health and wellbeing. These links are fertile ground for the future.

Mindfulness is a logical adjunctive therapy. Whilst not entirely risk free for everyone at every time the seeds of the technique can be nurtured in some ways by almost everybody. It has therefore got a favourable risk profile compared with other interventions.

Mindfulness is something a person can take control and responsibility for. It cannot be done to you or against your will. It fits well therefore with self management strategies and with the concept of recovery.

Finally, mindfulness can be relatively researched through trials, and there is growing interest in mindfulness research in leading institutions. The robust evidence base for self-management and self help strategies is sparse but growing, and where mindfulness shows potential it is easier to adopt and attractive to policy makers.

It’s great that people are thinking about their minds, their wellbeing and their priorities. It bodes well for workplace mental health, parenting, and for early years and childhood prevention. At the same time I’m interested personally and professionally though in how and whether mindfulness works for people who most need support and who may be furthest from the wherewithal to find and operationalise techniques like mindfulness…Those who live in poverty, with experience of trauma, who struggle to barely exist, who want to escape, who are lonely, and who are discriminated against by communities, the system and themselves.

Is mindfulness a fad?

Mindfulness is certainly in the public eye at the moment. And rightly so.  Whether you can call it a fad depends what a fad means.

Mindfulness is prominent at the moment with media attention including mental health awareness week this year, the Mindful Nation work by the All Party Parliamentary Group on Mindfulness, increasing academic interest and research funding, and a proliferation of products in the market. It is equally receiving a measure of critique and backlash in the media and blogosphere, a surefire way of tall daisy control of a potential fad.

A fad is for me something that rides a hype cycle to popular claim and eventual abandon and or discrediting by evidence.  Mindfulness is backed by an evidence base and a thousand of years of practice. In that sense it isn’t a fad. In the sense that it is being adopted and owned by so many diverse stakeholders perhaps takes it closer to fad land…with some risk. It would be my great regret if mindfulness became regarded as a fad because of this.

Overcoming stigma is a massive part of improving mental health service provision. Is there a risk that mindfulness might actually bring its own stigma?

Yes. Mindfulness is so simple that it can seem impossibly hard to grasp especially when mental health can be so complex. There are quite a few handles scared, resistant or sceptical people can use to use to discredit the practice, or the idea of the practice.

The Buddhist tradition is both an asset and a risk. It’s an asset in that it provides a way of addressing stigma in services so as to enable.staff to empathise with people in distress, to manage their own distress and to display compassion and non-judgemental acceptance.

It is a risk in that faith and religion polarise people, and the judeo-christian religions tend to be those with which people are most familiar. Many people with negative experiences of religion or faith will reflexively reject things they see as quasi religious especially in  secular health settings.

The apparent simplicity of practice and the fervour with which proponents advocate it can be off-putting for people with complex lives who don’t believe it could be that simple, chiefly because it isn’t that simple. If we have the evidence base and we can make it accessible we can progress.

The final area of concern related to self stigma, where a person with a mental health problem internalises negative attitudes about people with mental health problems. This can be compounded by things like trauma history and symptoms of mental illness so that practicing mindfulness can be painful or harmful, or the possibility of this becomes so large that people and professionals are unwilling to explore the potential benefits.

Self acceptance is key in mindfulness and in recovery but self awareness and acceptance can be a long way into a recovery journey in mental health. Mindfulness has to be found, not forced. There is justified fear in the mental health world that mental health service cuts will lead to the wholesale adoption of light touch interventions like mindfulness. That can’t happen.

Do you have any concerns about how mindfulness has grown and continues to develop?

Yes, in a nutshell I want to see more quality research to assist with developing mindfulness based prevention in mental health, and I want to see access broaden.

I have a strong sympathy with the argument that the rise of mindfulness in the mass market and the corporate worlds present a risk of it becoming a vehicle to individualise distress and stress, and take away from the duties organisations, neighbourhoods and government have to address determinants of mental health.

We all have to accommodate distress in our lives, but we shouldn’t allow the possibility of mindfulness being able to  help us manage distress and be resilient to permit an increase in avoidable stressors.

The solution, and counterbalance to this is ensuring that the metta aspects of mindfulness also find their way into business and mass market products, and that compassion, empathy and connection to the wider world is seen  as being equally important as personal effectiveness and focus in desired outcomes.

The risk with emerging solutions for complex problems is that the hope of a simple solution often rides over the gaps.

There are gaps.

A few years ago CBT was scaled and touted as the great hope for all distress. CBT is efficacious for some populations in some forms, where there is affinity to the evidence base. Now though there are vocal calls rejecting CBT because it has been stretched and repurposed.

It  doesn’t make CBT less effective for people who can benefit, but it does risk growing skepticism. The problem is that like recovery, stigma, and other concepts in mental health there was a proliferation of half informed CBTesque work and talk, leading to an arguable dilution effect.

I would be fearful that scaling and proliferation of mindfulness tools could bring a similar dilution, to the extent that the evidence based (in therapeutic approaches) and or spiritual based practices (in personal growth practice) become almost homeopathic in strength.

What are the one or two things that you’re most excited about in the next five years or so as mindfulness continue to grow?

There are so many. I think perinatal, early years and schools mindfulness has a great potential to inoculate young people and parents with a hugely useful life skill for navigating modern life.

I am a digital evangelist, and the rise and likely continued rise of digital and the internet calls for a proportional rise in the yang to that yin, with greater value for stop, reflect, and presence in the face of go, act and project. Mindfulness brings authenticity, and self acceptance and that is crucial across the board.

I want to see mindfulness trialled and developed in work with marginalised communities, so that we can understand its potential to support change and personal growth. To do this we need to be careful to grow sustainably and accessible in terms of the products made and the markets they reach.

Finally, I hope to see workplaces adopt mindfulness in business and organisations, to harness the millennial interest in more flexible work and more ethical workplaces by not just reaping the rewards of productivity and better mental health but by also attracting the best talent and supporting local communities and customers thorough metta informed social responsibility.

Remembering Lorraine Nicholson

24 Aug

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It has happened again. Another mental health champion has lost their fight, and died too soon by suicide.

Lorraine Nicholson was  quite simply one of the most warm, authentic, honest and discreet people I have met in nearly twenty years of mental health activism and campaigning.

There are activists who talk loudly, activists who work tirelessly, activists whose opinions clash, those who like power, those who reject power…those who thrive in the system and those who reject it or disrupt it. Our movement is broad.

Lorraine had the rare gift of being able to bring something to almost every corner of the movement, and to earn respect across the board and in any room.

Our movement has never needed people like Lorraine like it needs them now.

In mental health the term peer seems to be diluted, assumed, or mortgaged as much as it is cherished, valued and prioritised. I am humbled and proud to have been a peer of Lorraine’s, and I am certain there are hundreds of people across the world who feel that way this week.

Lorraine never sought to be a leader, but she led. She quietly and unassumingly took part, listened, took things in, and made well-crafted and intelligent points without grandstanding. Lorraine went to international gatherings and conferences, and brought back things people could use, and ideas that mean something to both policy wonks and people on the ground.  She didn’t stand up and claim to be a sage, or promote a particular canon of peer support or art. She had a calm authority that came from being totally authentic and sharing only what was relevant to the moment at hand. If you didn’t know Lorraine, this interview from BBC Radio Scotland gives a sense of who she was and how she approached life.

I’ve worked with Nordic people in mental health for a number of years and when Lorraine told me she was heading to Lapland on Erasmus I cracked a big smile. I felt sure Lorraine’s modesty, sense of social justice, love of the outdoors and rich sense of light and dark would see her adopt the Nordics, and so it proved.

As well as a unique personal artistic journey, Lorraine pushed herself to new personal achievements, relating these on social media with modest almost embarrassment to the universal delight to those of us watching at home. Of course, Lorraine also discovered the Open Dialogue method in Finland, and was determined to bring that kind of egalitarian, holistic model of care and support to Scotland.

Lorraine and I shared a passion for the exploration of emotion in visual image, and the telling of stories and the combatting of stigma through art and photography in particular. Back in 2012 we hatched a plan to being photography into the mental health arts and film festival and explore the many attachments photography had to recovery, personal journey, documentary and art. We ran the event ‘A Picture in Mind’ as part of SMHAFF 2013, and continued to meet regularly to share ideas on photography and creativity. We both used images to convey emotion, and to better understand and address our internal weather. Lorraine shared this image with me for the project. It says so much, so plainly.

be there is all - Lorraine Nicholson

Scotland is a small place. There are people in the mental health family in Scotland who have known each other for decades, many of us working in the voluntary sector but also people in other fields and now across the world. There is a respect, a mutuality, a peer connection between us, a respect for fellow travellers. It isn’t always an easy set of relationships but ultimately it’s all for one and one for all even when people are unwell, or being unreasonable.

In mental health, we’ve all lost people to suicide before, and every loss affects us all, causes many of us to value our friends and family more, and reconfirms a mutual desire to do this work, fight this fight, and make a difference.

Now we have lost Lorraine, too soon, too unfairly. And again, I find myself confirming what I felt before. There but for a few different turns in the road it could have been me, tomorrow it could be someone else, and at some point in the future that phone will ring again, and it will be another fellow traveller. Losses like this fill me with a sense of compassionate togetherness with others, as well as deep sadness at Lorraine’s loss.

Being around people like Lorraine, people who quietly challenge, give me a sounding board, share stories and make things better is so important. That counsel and grounding is arguably the most important thing in my professional life.

Losing Lorraine makes me treasure and value being part of the mental health movement even more. It makes me also doubly sure that addressing suicide and distress remains an abiding professional goal. At times like this I always return to the wonderful metanoia website intended to reach out to people in crisis. It has helped me and many others in dark nights. Suicide happens when barriers are overwhelmed, so it’s important to watch the sea, build strong walls and most importantly reach out. Samaritans volunteers are available to listen 24h, 365 days, by phone and also by email, text and in person.

I’m only sorry that I can’t pick up where I left off with Lorraine next time I see her. The rest of you reading…look after yourself. Pick up the phone or send a message. Let’s get coffee. And change the world.

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.