stigma

A bit of courage

The more worried I feel about expressing my views on a particular topic, the more interest a blog seems to generate.

I’ve written this in anticipation of the Mental Health Taskforce Report, finally due out next week. Although, I’m unsure what you’ll think, I feel the need to say some things I could not have said when I was doing my old job running mental health services.

Mental health services are undoubtedly scary. But they are not all the same. The atmosphere and standard of care even on different wards in the same hospital can vary widely. It depends on the expertise and most of all the compassion of the doctors, nurses and the people in charge. If you have had a poor experience of care, either as a patient or a family member, that is terrible. It is vital that we face the fact that 1 in 3 people say they experience stigma within services. The Time to Change project I’ve been chairing addresses this, with more to report later this month. But at the same time, we must do all we can not to terrify people who need treatment. The chances are they will receive care that will really help. And if they start out assuming the worst, it will be even harder for the staff working with them to establish a therapeutic relationship. And this is the most valuable treatment tool available. I know this from personal experience.
The standard and availability of care in mental health services also depends on the attitudes and expertise of those running and commissioning these services. There is a real and present danger that, faced with wicked choices of saving vast sums of money from the NHS, commissioners look to make savings which will cause the the least outcry, ie from mental health. This isn’t an opinion, by the way. It is a fact. In particular, they look at most expensive care, which happens to be in hospitals, and persuade themselves that the local population can do without most or even all of it. But they can’t. To try to “re-engineer” aka cut beds without careful testing and sustained investment in evidence-based alternatives is irresponsible and dangerous. And yet this is exactly what has been done and continues to be done all over the country right now. Lord Crisp’s report into the availability of acute mental hospital beds published yesterday laid the facts bare. It was a good start. And the access targets it proposes will help. But we still have a long battle to rid ourselves of stigma towards mental health services not only from society but also from the rest of the NHS.
Alcoholism and misuse of drugs are symptoms of mental distress and/or of underlying mental illness. To treat them simply as addictions is cruel and pointless. It may seem cheaper in the short term to separate such services from the NHS and employ unqualified staff to provide care. And it may be politically attractive to take a punitive, non-therapeutic approach to those who self medicate with alcohol or illegal drugs. But to do so condemns vulnerable people to a half life of pain and a premature, horrible death.
There are millions of treatments available for physical illnesses. The same is so for mental illnesses. But why is it that people think they have a right to comment on the treatment of others who are mentally ill in a way they would be unlikely to do for, say, diabetes or heart disease? It’s true that psychiatry and psychology are inexact sciences. This is why they take more expertise, humanity and humility than the other disciplines of medicine. So if you feel tempted to comment on someone else’s treatment, unless you are their trusted clinician, please don’t.
There is no hierarchy of mental illnesses, and no patients who are more “deserving” than others. People who experience psychosis don’t deserve more pity than those who have bipolar disorder, or vice versa. And a short bout of clinical depression can be just as fatal as anorexia nervosa. Please remember this and put away your judgements.
You can’t see mental illness. And that’s part of the cruelty. Getting up and going to a cheap cafe to spend the day with others who understand the challenges of mental illness might sound easy to you. If you feel inclined to bang on about the value of work to those for whom the thought of being compelled to attend a job interview causes them to seriously consider jumping under a train, please shut up. Just because some people don’t get sympathy from tabloid newspapers doesn’t make them any less of a human being than you.
I’ve no problem with the use of words like bravery to refer to those experiencing cancer. And I know from friends with cancer that they have no choice but to be brave. But can we please recognise the courage, guts and determination of those who experience life with mental illness? And can we stop talking about suffering, because it implies passivity and weakness. The one thing I know about every person I have ever met who lives with a mental illness is that they are anything but weak. They are creative and heroic, in ways those who’ve never faced a life such as theirs can only imagine.

People who live with mental illness should be applauded and lionized. Not criticised, preached at, commented on, misunderstood and shunned. I hope next week’s taskforce report will recognise this.

Go us. Thank you.

How do you feel today?

They say you should do something scary every day. I’m not sure. Although I do know that I need the occasional exhilaration of putting myself in an uncomfortable position and overcoming my nerves to make me feel fully alive. Such opportunities came along a bit too frequently when I was a chief executive. But these days I probably don’t scare myself often enough.

Today is the annual Time To Change #TimeToTalk day. Last night, the choir I recently joined held an open mike session. And I decided to terrify myself at the last minute by offering to do a turn.

Although I can follow a tune and love to sing, I am not like the other wonderful acts that got up and entertained us. I have no special musical talent. But I can talk about stuff.

So I found myself standing there and explaining to a packed pub why I had decided to join the choir. Which is that singing with other people is really good for me. Since school choir days, I have yearned to sing again in a choir. I am full of wonder at being part of something greater than myself. I love having to concentrate really hard in order to follow the music. It moves me when a piece we have faltered over suddenly comes together in glorious harmony. Singing with others of a much higher standard helps me to raise my own game. It feels visceral yet sublime.

And I told them about my history of anxiety and depression, and the impact it has had on me, off and on, over 45 years since I was 15. I talked about stigma, including self stigma. And I told them them that I knew I wasn’t alone, because at least 1:4 people in that pub were like me, possibly more. I told about the research of the positive impact of singing on mental well-being.

And then I asked them to join me and celebrate Time to Talk Day by talking to someone else about mental health.

How did it go? Well, I was nervous of course. But they were lovely. I got clapped and cheered. There were a few tears. And some lovely conversations later. I shouldn’t really have expected anything else. The choir is amazing and our conductor MJ is not only a multi-talented musician. She is also an inspiring, compassionate leader. She gets the best from all of us, as singers but also humans.

If you have experienced mental illness but feel shy about telling people in case they judge you, maybe you could do something scary today? Please think about taking the plunge and talking to someone about it, what you do to cope but also how it is only one thing about you. Talk to a colleague, a friend or just someone you happen to bump into. Use Time to Talk Day as your excuse. And ask them about their own mental health. Listen really carefully to what they say. I think you will be pleasantly surprised by your conversation.

And how do I feel today? I think you can probably guess :):):)

Blessings

Books that have inspired me this year by @Suzypuss @jamestitcombe and @molly_speaks

To keep depression at bay, it helps to count one’s blessings. My Twitter friends are a very big blessing. Here are some thank you messages for 2015:

To campaigning journalists @andymcnicoll and @shaunlintern for supporting underdogs including mental health care and people with learning disabilities. Please never stop.
To Adam and Zoe Bojelian who lost their dear son @Adsthepoet in March 2015 but keep his legacy alive via Twitter. You are in our thoughts as you face a first Christmas without your wise, beautiful boy. We will never forget him and what he taught us.
To @JamesTitcombe who lost his baby son and has courageously campaigned for greater openness over mistakes in the NHS, despite some vile online abuse. I treasure my copy of Joshua’s Story. And I thank James for all he continues to do to make the NHS safer for patients and their families.
To all who bravely act as patient representatives, such as the indomitable @allyc375, and remind regulators, commissioners, managers and clinicians what the NHS is actually for. Only they know the cost of speaking up. Go Ally, @anyadei @ianmcallaghan @DavidGilbert43 and others who’ve earned the right to call themselves patient leaders.
And to @HSJEditor for taking a risk and running the first HSJ list of patient leaders. Thank you Alastair. I think it was a game-changer.
To those who’ve grasped one of the most feared conditions and are making life better for those living with it. I mean you, @dementiaboy and @dr_shibley. To you and others like you, thank you for refusing to leave dementia in the too-difficult box.
To @Liz_ORiordan who is generously sharing her experiences of breast cancer care, which for a breast surgeon is a pretty massive deal. And for some other stuff.
To @EastLondonGroup, who introduced many of us to a group of previously little known landscape artists from the early 20th Century. Sunday Morning, Farringdon Road has become a landmark of my week.
And to @penny_thompson, for pointing me to ELG and for always being true to her values.
To poet @Molly_speaks for painting pictures with words in her lovely new book Underneath the Roses Where I Remembered Everything
To @HPIAndyCowper, for his excoriating, original analysis of the NHS, and for his support to me in my scribblings.
To @clare_horton for running the excellent @GuardianHealthCare and even including some of my pieces. This meant so much.
To @seacolestatue @EAnionwu @trevorsterl @thebestjoan @pauljebb1 @joan_myers and many others for plugging away in the face of seemingly impossible odds. The Mary Seacole Statue will rise in 2016 as a permanent memorial to someone who showed how, if something matters enough, we should never give up.
To @nhschangeday @PollyannaJones @helenbevan dani_ellie @jez_tong @LydiaBenedetta @cjohnson1903 @WhoseShoes @fwmaternitykhft @DaniG4 @damian_roland and so many others for including me in NHS Change Day 2015. I was meant to be helping you but I gained many times more than I gave.
To @TimetoChange @suebakerTTC @paulfarmermind @carolinewild @danbeale1 @2gethertrust @NTWNHS @rethink @mindcharity and a whole raft more for being a major part of my life this year, working together to tackle the stigma that still exists within the NHS towards folk who, like me, experience mental illness from time to time but are so much more than our diagnoses. Here’s to you.
To @nurse_w_glasses @anniecoops @drkimholt @gourmetpenguin @AlysColeKing @DrUmeshPrabhu who show by words AND actions that compassion is alive and kicking amongst health professionals
To wonderful women leaders such as @SamanthaJNHS @BCHBoss @JackieDanielNHS @ClaireCNWL @CharlotteAugst @KMiddletonCSP @Crouchendtiger7 @DrG_NHS @VictoriBleazard @JaneMCummings @CarolineLucas @juliamanning @TriciaHart26 @clarercgp who stick their heads above the parapet and make the world a better place
And folk like @NHSConfed_RobW @ChrisCEOHopson @cmo @profchrisham @ProfLAppleby @WesselyS @nhs_dean @NHSE_Paul @ScottDurairaj @stephen_thornton @jhazan @rogerkline who prove that leaders on Twitter don’t have to be women to be fabulous
To bright, bubbly new leaders like @anna_babic and all those I’ve met via @NHSLeadership, who fill me with hope for the future. And to @Alannobbs @kirsti79 @NoshinaKiani and all the other great folk at the NHS Leadership Academy. You do stunning work.
To @GrassrootsSP and everyone who works to prevent the long shadow cast by suicide. Thank you.
To everyone who supported me in my bike ride for @samaritans in the summer. Especially @NurseEiri and @JackieSmith_nmc. They know why.
To @Suzypuss whose book The Other Side of Silence has inspired me to get on and finish mine.
To wise owls @johnwalsh88 @TelfordCC @KathEvans2 @gracenglorydan @timmkeogh @RecoveryLetters @profsarahcowley for being beacons when the world feels a bit too hard
To friends who also experience mental illness from time to time and who share their thoughts and feelings so generously. Thank you @BipolarBlogger @Sectioned @BATKAT88 @annedraya @clareallen @corstejo @schizoaffected @rabbitsoup_zola and many, many others. On a not-so-good day, yours are the tweets I look out for. You bring me hope.
If I could, I would add everyone else I’ve chatted with on Twitter this year. To everyone I follow and who follows me: Twitter is 97.5% good for my mental health, and that’s because of all of you. Thank you all so much. I wish you all much love for 2016. You rock :😎💃❤

I’m sorry. No ifs and no buts.

Last night, I glanced through a well-written Guardian Healthcare piece about the distress experienced by a psychologist over the death by suicide of a patient. It touched a nerve deep in me, and I tweeted this:

Those who rush to judge mental health staff should read this honest piece. In my exp, every loss is as keenly felt
https://t.co/WGM0S2lALL

It got 15 retweets, 9 likes, some positive comments from people who work in mental health services but also a few more questioning ones from people who I would describe as experts by experience. And it was these, plus my initial reaction to the article, that have had me thinking rather hard over the past 24 hours.

I want to make some unequivocal apologies:

I am sorry for my initial tweet. It is sadly not true that all such deaths are so keenly felt. Many are, but by no means all. I desperately wish they all were.
I apologise to all those staff at the mental health trust I once ran who experienced the death by suicide of a patient and who didn’t get the support they needed to help them cope with such a loss or learn valuable lessons that would help them and other patients in the future. Despite my sincere wishes otherwise, I wasn’t always as consistently effective as I intended to be in this regard. I am so sorry for this.
The people I was referring to who “rush to judgement” and look for people to blame after a death by suicide are NOT people who have experienced care, good or poor, or their families. In my not inconsiderable experience, such people are often the most moderate, thoughtful and compassionate towards the staff. Those who DO rush to judgement are some, not all, of the media; some, not all, politicians; and a tiny but vociferous minority of the general public. It can nevertheless feel overwhelming to be under such an onslaught. I have experience of this. But I should have made what I tweeted clearer. I am really sorry that I didn’t, because I upset and hurt people whose feelings matter very much to me. I may have done so inadvertently, but I was careless. And I am truly sorry.
This stuff is particularly painful to me because of my own experiences many years ago when I made an attempt at suicide. What the nurse in A and E said to me, that I was selfish and a waste of space and keeping him away from patients who were really ill, had a deep and lasting impact. It took many years before I confronted my shameful secret and quite a few more before I came to accept that he had been wrong. So I am especially sorry that my tweet wasn’t well-constructed. Of all people, I should know better.
It was after I returned to work in 2014 after my worst-ever depressive breakdown that I fully confronted the reality that staff who work in mental health are not all as compassionate as we might hope. There are many wonderful people, but there is still some downright cruelty, some poor attitudes and practices and some not inconsiderable compassion fatigue. I have written about this and my contribution to changing things here and about how challenging it is here. Today, we had a really good, honest project working group meeting, which I chair. This is extraordinarily difficult stuff. It cuts to the heart of things that matter deeply to me and to all the others around the table. So I am especially sorry about my tweet. As a writer, I should be more precise and thoughtful. As a chair, I have responsibilities. As a human, I should have taken more care.

I thought about just deleting the tweet. But that won’t make what happened go away. An unequivocal apology seems a better response. That, plus continuing the work with Time to Change to tackle what we know from countless surveys to be true, that stigma and discrimination are still alive and kicking within mental health services. And if we allow ourselves or anyone else to go la-la-la-la-We’re-not-listening, we, indeed I, are/am complicit in letting it continue.

You will be hearing more on this from me and others in due course. Our work will, I hope, feature in the upcoming Mental Health Taskforce report and in the future work plans for Time to Change.

The death of anyone by suicide casts a long and painful shadow. It is right and to be expected that staff should feel distressed. But they also need compassionate support so they are able, eventually, to carry on being compassionate themselves. And the ones who can’t be compassionate need to be helped to find something else to do.

One of my big lessons in life has been that I can’t be truly compassionate towards others if I am not compassionate towards myself. This means forgiving myself for making mistakes. I hope the people who I carelessly hurt by my tweet will forgive me too. Eventually.

PS In fact, within a couple of hours of posting this I had heard from all those mentioned. I feel deeply blessed to know such kind and forgiving people :):):)

Let’s be kinder about obesity

Fat-shaming is a recent phenomenon. People who do it include doctors, NHS managers, politicians, journalists, comedians and ordinary folk like you and me. I write as one who has done it as well as had it done to me.

I always liked the beach

Here’s me as a baby. Fully breastfed, I was bigger than my tiny mother almost before I could walk. I take after my father. I am robust. I love my food.

Humans are built for survival. Some are wiry and can run fast for long distances. Others have staying power. In an emergency situation, chunky people like me can cope with cold and hunger because we can survive on our fat stores. We are the polar bears and the Arctic seals of the human race.

Our modern Western world has played havoc with these survival characteristics. As long as you have money, food is plentiful. But the least nutritious, most fattening sorts of food are often the cheapest. And the combination of sugar, fat and salt in many processed foods such as cakes, biscuits, chocolate, ice-cream, crisps, milkshakes and even bread is, apparently, addictive.

This Ted Talk is enlightening. It helped me understand why losing weight is so hard. When you have gained weight, your body quickly adapts to being bigger, and adjusts your metabolism accordingly. Resetting the metabolic rate is extremely difficult. Once you have lost weight, you will probably have to eat fewer calories for the rest of your life to maintain your reduced size, even with regular, vigorous exercise. So you are fighting not only an addiction, but also your own nature.

And there is another factor. Many modern medications, particularly those used to treat various sorts of mental illness, have the unfortunate side effect of increasing one’s appetite. People taking them find they feel hungry all the time, and not surprisingly they eat more. I finished my antidepressants six months ago. Yet I have at least half a stone to shift, and despite extensive motivation and knowledge, it is proving a struggle. I know from chatting to others how distressing it is to gain four or five stone very quickly, with all the disability and stigma that goes with being overweight to add to the burden of the mental illness for which you have to keep taking the medication that leads to the weight gain.

I know people who have been to the doctor and been encouraged to lose weight. And then they go to the shop next door to buy a newspaper and are told that if they also buy a cheap monster size bar of chocolate (which contains more calories than they need to eat in a whole day but no protein, vitamins or roughage) the newspaper will be free. If this were cigarettes or drugs, we would be horrified.

Given the cost to the NHS of obesity, with its links to heart disease, strokes, Type 2 diabetes, cancer, arthritis and other long-term disabling conditions, not to mention depression, anxiety and agoraphobia associated with body image and self worth, you would think that investing in prevention and effective treatments for obesity would be the place to start.

I don’t like the term obesity epidemic. Obesity isn’t catching. Nonetheless, 60% of us in the UK are now either overweight or clinically obese.

There is mention of this in the NHS Five Year Forward View. But until this week, there has been no systematic appraisal of the best ways to help people achieve and maintain a healthy weight, nor a coordinated, evidence-based commissioning approach to weight-loss and healthy weight maintenance services. Public Health England have produced a report about sugar, but we have just learned that it has been withheld.

Who knows what the real story behind this is? I don’t really care. I just know that leaving obesity to individuals to tackle is unfair, ineffective and helps no-one but those who sell us all that stuff we don’t need.

Our current attitude to obesity is bizarre. Let’s tackle the food giants who push processed junk food at us from every direction. Let’s publish the public health report into sugar and do the economic appraisal that will prove beyond all doubt that helping people rather than criticising and lecturing them would in the end save a lot of money and even more unhappiness.

And most of all, let’s stop blaming people for doing what comes naturally.

This is an update on a blog I wrote earlier this year. I’m reprising it because of the fuss this week about Public Health England’s report into obesity and the Prime Minister’s apparent refusal to consider a possible tax on sugar.

Please do this and please don’t say that

Since coming out about my on-off relationship with depression, I’ve lost count of the number of people who’ve asked me stuff and told me things. Some have been extremely helpful, some not so much.

Here’s my handy guide on what not to say to someone like me:

Please don’t ask “So why do you think you get depressed?” If I knew that, I’d fix it. I’m trying to find out, but it’s a work in progress.
Please don’t say “Have you thought about exercise?” You bet I have. And now I’m in recovery, I’d love you to come for a walk or bike ride with me. And see if you can keep up.
Please don’t say things like “When I retire, I’m worried I might get depression like you did. How can I avoid it?” I don’t know! What I do know is that depression isn’t caused by one thing. If you’ve got to this stage in life without experiencing it, chances are you never will. But I can’t make any promises.
Please don’t say “When I get depressed, I always…. (insert favourite pastime/exercise/indulgence.)” Thanks for the information, but you haven’t had depression. Or you wouldn’t say that.
Please don’t say ” Do you think talking/writing about your depression might make it worse/bring it on?” No I don’t. Sure, exploring this stuff is painful. But psychological wounds are like physical ones. They won’t heal if you simply cover them up. They will fester. To heal properly, wounds need sunlight and oxygen. Being open is the antidote to the nasty old stigma which makes people who don’t experience mental illness feel embarrassed about it and people like me who do feel ashamed.
Please don’t say “I never thought of you as the sort of person to get depression. I always thought you were so strong.” Yes. And that’s part of the problem. If you read Tim Cantopher’s Depressive Illness: The Curse of the Strong, it will help to invert your thinking about depression. As it did mine.
If I’m not on medication, please don’t tell me that I should be taking it. If I am, please don’t pass judgement, or ask if I have thought about talking therapies instead. And please don’t call antidepressants “happy pills”. People with physical illnesses such as cancer or heart disease don’t need well-intentioned, uninformed amateurs to opine on their treatment. People with mental illnesses are the same. It is neither good nor bad to take medication. It is just sometimes an essential part of getting better or staying well.
Please don’t say “You seem too jolly/optimistic to get depression.” Again, do read Tim Cantopher. Depression is rarely a permanent state. For me, the stark contrast between how I feel when depressed and my state when well is close to unbearable.

Depression isn’t the same thing as sadness. In my case, it is a combination of self-loathing and emptiness. But we are all different. See my letter to you for further info. It includes the details of the book I mentioned above.

Having listed some Please Don’ts, here is a precis of what I have found, through experience, really helps.

Do please:

Hold my hand when I need it
Be patient
Listen carefully and don’t overreact
Resist judging
Encourage me to seek professional help if I seem to be going round in circles
Tell me you won’t allow me to let this thing define me
Avoid defining me by it yourself
At the same time, allow me to incorporate it into my life.

Like anyone who experiences any form of mental illness, be it lifelong or more fleeting, I am so much more than it. But it is also part of me. I am learning to accept this, as I hope you can too. Not for me, but for the 1:4 people who experience mental illness from time to time. Because this is the only way we will truly eradicate the stigma that so besets us.

Thank you for your kindness in reading this. It means a lot.

Sussex will never be the same. But we stand together

Saturday 22 August 2015, lunchtime. I’m looking forward to football – Brighton and Hove Albion v Blackburn Rovers. We got back from holiday last night. Steve has gone to Storrington via the A27 near Shoreham Airport to collect William from his cattery. They should have been home an hour ago. I notice via Twitter that there has been an incident at the air show affecting the A27. Slight anxiety till husband and cat return.

At 2.15 I set off on my bike to the Amex. The air is warm and still, the roads empty. At the stadium, we learn that kick – off will be delayed as the A27 at Lancing is shut both ways. Several thousand spectators fail to arrive. We win, not especially well. People keep checking their phones for news.The atmosphere is muted. Son, 28, hugs me spontaneously.

It is only the next day, as estimates of the number who may have been killed keep rising that the enormity of that Saturday moment really begins to sink in.

As I go about my Sunday, I think of those anxiously awaiting news. The names of two 23 year olds are released as the first to have lost their lives.They were semi-pro footballers at Worthing United, en route to a match in Loxwood. One was an Albion employee, both were Albion fans. Tony Bloom, our chairman, loses his composure as he pays tribute to two lovely boys. There will be many mothers like me feeling guilty for being thankful we have no-one missing.

Monday 24 August. On the Today programme, John Humphrys allows his exasperation at the dissembling of an aviation authority representative to get the better of him. He refers to the German Wings incident and talks of “Mad people getting into the cockpit”. A gratuitous, stigmatising link. I recall an appearance myself on Today earlier this year to challenge the German Wings coverage.

A planned day out with a friend to celebrate our 60th birthdays starts with an exhibition at the Imperial War Museum. The poignancy of the loss of young lives catches me unawares.

Much later on my way home, I check the BBC website. There are now six named dead or missing, at least five more to come. The A27 will remain closed all week. The West Sussex Coroner calls for patience; the scene of devastation is beyond comprehension, and identifying the bodies is painstaking work.

Tuesday 25 August. The national media has moved on. But Radio Sussex and our local paper The Argus continue to dedicate much space to the incident. The reporting is beautiful in its sensitivity and as far from sensationalist as you could hope. Careful attention is paid to those already known to be lost, those waiting for news, the ones involved in the clear up and local people who are just shocked and stunned. MP Tim Loughton does what leaders should in times of crisis and is present, calm and thoughtful in his comments. The police, ambulance, fire and rescue teams and volunteer helpers are heroic. The NHS is doing what it does best, saving lives, or trying to. News of the pilot isn’t good but people pray for him. There is no finger pointing. But there are understandable queries about whether vintage planes should be used in air displays over built up areas. The Shoreham Airshow as we know it may be no more.

We all have mental health. Events such as these don’t cause mental illness. But they affect our wellbeing in many ways. It’s wonderful to see Sussex Partnership and the rest of the NHS offering advice and help to those who need it.

And I’m pleased to see my friend Daniel from Brighton, Hove and District Samaritans speaking about voluntary support, including Samaritan volunteers who have been making themselves available to talk to distressed folk paying tribute to the dead. I can think of no-one better placed in such circumstances.

Thursday 29 August. This morning, two days after posting the original version of this blog, I get a call from Radio Sussex. They are doing a programme on Saturday lunchtime live from Shoreham Footbridge to pay tribute to all those who have died, been hurt, have helped in the clear-up or been otherwise affected in any way. Presenter Neil Pringle has suggested they ask me to appear in the programme. I couldn’t be more honoured. I will do my best to say things that will help people.

These are troubling times. Sussex has been dealt a body blow. How can we all help one another? By standing together, being patient, thankful, hopeful, and relentlessly kind.

Nobody said it was easy…

My last blog was about the launch of the Time to Change project, working alongside two volunteer mental health trusts to tackle the stigma within mental health services. It got lots of positive comments. And a few negative ones.

In the interests of improvement, I thought I’d share the latter, see what I can learn from them and also offer my response.

The comments fall into three broad categories.

1.People who do bad things need calling out. That is the essence of accountability. This project ducks the issue.

I understand what you mean. And I agree. If someone has done something wrong, they should account for their actions. That is what any fair and just system is based on.

But…We are talking about attitudes. And it isn’t possible to change these by telling people they are wrong. And shaming or even punishing them. It doesn’t work. It can actually entrench those attitudes.

The Truth and Reconciliation Commission in South Africa recognised this. It sought to use compassion and forgiveness to build bridges between groups who had done terrible things to each other. Archbishop Tutu used the learning from this work to build his worldwide Tutu Foundation, which teaches mediation to troubled nations and groups. Underpinning it all is his belief that people are made for goodness.

Time to Change has worked on this basis since 2007. They use facts and compassion to help change attitudes. They have had significant, measurable success. This project is no different. Facing up to what is wrong is not ducking the issue. It is honest and truthful and has taken huge courage. Changing things requires sensitivity and compassion. And that’s how we will be working.

2.Teaching staff about mindfulness and compassion is bollocks. It doesn’t work. There is a “happiness industry” out there ripping public services off and laughing all the way to the bank.

I use mindfulness myself, and am proud that my ex-colleagues at Sussex Partnership have been offering mindfulness-based CBT and mindfulness meditation to patients and staff on an increasing basis for the past 5 years. It does work. There is a large evidence base.

But I agree it is not a panacea. Nor does it work for everyone. Mindfulness doesn’t fix poverty, a housing problem or unkind treatment from someone else. What it does is enable you to control your emotional response to such challenges and not allow them to define you.

Our project will use a range of methods to help staff bring their whole, most compassionate selves to work. It won’t duck from identifying the cultural, organisational and external factors which affect the delivery of compassionate care. And this won’t be easy. But we are determined not to paper over problems.

3.Someone like you (me) who has had an occasional bout of depression has no idea about the stigma of serious mental illness. Thinking you are helping by disclosing your own experiences is self indulgent shit.

You have touched one of my rawest nerves. I shared your view for many years, which was why I kept my depression to myself. Added to that, I truly didn’t believe what I experienced from time to time was depression. I thought of it more as my own moral weakness and laziness. Words like self-indulgent were designed to perfectly describe me.

But now I’ve had some really effective therapy. I’ve learned that I’m not a bad person. And that my response to distress and dissonance is to turn in on myself with self-hatred that is greater than anyone else can ever feel towards me. I become my own worst enemy. This is a major aspect of my depression.

It is true that I don’t have the longterm effects of an illness such as schizophrenia to contend with. But just because I’ve managed to muddle through my life and have achieved a few things despite not infrequent bouts of depression doesn’t mean it has been easy. Judging me for not being more disabled is pretty sick, when you think about it.

So I’m going to continue being open about what I do to try and stay well, which I am at the moment, and about what it’s like when I’m not. And I’m going to listen to the thousands of people who have told me that coming out has helped them be more open. Rather than the handful who judge me as self-serving.

At least, that’s what I will try to do.

I’m looking forward to sharing these thoughts with members of the project working group and to hearing their own experiences and challenges. I’ll keep you posted on how we are doing.

And my final thoughts? Nobody said this project was going to be easy. But nothing worthwhile ever is.

Cycling for Samaritans: I did it my way

Please look at my page called Ride 100: I did it My Way for the final story. Thank you!

If I ruled the world…

In a previous life, I ran a mental health trust for 13 years. It was really hard, but it brought some influence to bear on something that matters very much, i.e. the experiences of 1:4 people, who, like me, are sometimes mentally ill.

In 2010, as Chair of the Mental Health Network, I shared a platform with Health Minister Paul Burstow, Paul Jenkins, then of Rethink, Sarah Brennan of Young Minds and others at the launch of the coalition government’s mental health strategy No Health Without Mental Health. In 2013, I met Norman Lamb (who took over the ministerial role in 2012) and a few other senior colleagues to discuss why it was that the strategy hadn’t completely worked, in our opinion. The shocking evidence of widespread disinvestment in mental health services was by then becoming clearer, rigorously uncovered by investigative journalists Shaun Lintern (HSJ), Andy McNicholl (Community Care) and Michael Buchanan (BBC). Who are heroes in my opinion.

In times of plenty, mental health services have received at least a small share of extra resources available. Professor Louis Appleby’s excellent National Service Framework was delivered from 1999 – 2009 through increased investment in crisis services, early intervention and assertive outreach teams. And it was strictly monitored. Commissioners and/or trusts who thought they knew better than the best evidence of what underpinned compassionate, effective care for people with serious mental illness were found out and given no option but to improve. The architecture that did this monitoring has since been dismantled. We are left with regulation, inspection, adverse incident reporting and stories in the media.

The pressure by local commissioners on providers to swallow the current disinvestment medicine is considerable. Mental health leaders who make a fuss are viewed as lacking loyalty to their local health system. Were the same cuts made to cancer or heart services, there would be national uproar.

This tells us something, which is that stigma towards the mentally ill is alive and kicking within the NHS.

A true story: the other day, I mentioned the wonderful Alison Millar’s Kids in Crisis programme to someone senior from NHS England. I could tell they were irritated to be reminded that very sick children are currently languishing in police cells or being shipped hundreds of miles around the country while desperate clinicians spend hours trying to find a bed. This person actually said that parents are prepared to travel all over the world looking for the best treatment for conditions such as cancer. So why should CAMHS be different? When I reminded them that this wasn’t about highly specialist care, just access to care anywhere, they blamed the failure on local services and moved on to share their insights with someone else.

So we have denial about the impact of disinvestment, as well stigma. And I realise that in my new freelance world, I have a different sort of influence.

Thanks to Paul Jenkins, now CE of the Tavistock and Portman Trust, for his blog this week on the paucity of investment in mental health research. Another example of how stigma is flourishing towards those least able to argue for resources. And to Andy McNicholl for his piece on the bed crisis in adult mental health services, mainly caused because people are being hospitalised when other services have closed, or there is nowhere safe for them to go when they are ready for discharge.

Regarding the NHS Five Year Forward View (5YFV) here’s my 6-point plan for making mental health more mainstream. With measurements. Because if you don’t measure, you can’t manage.

1. Suicide prevention

Make suicide prevention the business of every citizen of the UK. Stop blaming mental health trusts and their staff for failing to keep people alive. The responsibility is much broader than that. Locate suicide reduction planning with Health and Wellbeing Boards. Make it their number one priority, with proper support as well as sanctions for lack of progress.

2. Mental health within the NHS

Expect every provider and commissioner to make the care of people who happen to experience mental illness their explicit business. Start with primary care. Require every NHS employee, including reception staff and everyone who works in a commissioning organisation, to do a minimum 1/2 day training, with an annual update, delivered by experts by experience. Report on compliance via the annual NHS staff survey.

3. Integration

Require local systems to produce integrated commissioning plans for all primary and secondary services. Particularly crisis care; dementia; all major physical conditions such as heart disease, strokes, obesity, diabetes and cancer; neurological conditions such as MS and MND; and musculo-skeketal conditions including chronic pain. Draw on the RAID model for measurement. Allow organisational form to flower according to local need. But also require investment in integrated services through an annual reduction in organisational overheads, and increased investment in the third sector.

4. Public health

Reduce premature death rates in people with serious mental illnesses of up to 25 years by making mental health promotion core business for primary care and secondary health providers in the statutory and non-statutory sectors. Target supportive, evidence based obesity reduction, smoking cessation, substance misuse harm reduction and exercise programmes for people with diagnoses such as schizophrenia, bipolar disorder, PTSD and personality disorder. Set ambitious targets over the next 25 years and monitor hard against them to help turn around the life chances of some of the most marginalised people in society.

5. Making the business case

It is up to the NHS to articulate and prove the business case for a change of approach in welfare for people with long term conditions such as serious mental illnesses. Commission the best brains eg Professor Martin Knapp at LSE to put the evidence together. Which is that it is considerably more costly as well as more cruel to condemn people who experience mental illness to poor, insecure housing and limited, insecure income, and for them to appear frequently and often pointlessly within criminal justice services.

But these costs do not occur in one place. Creating exciting opportunities for engagement and volunteering such as The Dragon Cafe can help people move from being recipients to full participants. Placing employment specialists within mental health teams and incentivising pathways into work are also proven to be highly successful. The alternative, i.e. penalising those in need of help, is counter-productive. It forces people to have to make themselves appear less able, makes them reticent about coming off benefits for fear of never getting them back should they need them in the future, as well as being extremely detrimental to their long-term well-being.

6. Research and improvement

Shine a light on why so little is spent on mental health research, given the financial and life chance costs of mental illness. Do something serious ang longlasting to reverse this. And then measure the impact longditudinally. No-one says we’re spending too much on cancer research, do they? Use that as our benchmark.

AND listen to the eminent and brilliant Professor Don Berwick, who makes the point that inspection never improved any health system. We need to invest in improvement science, architecture and skills for the whole NHS, of which mental health is an intrinsic, integrated part. Calling something NHS Improvement doesn’t necessarily make it an improvement body, by the way. But it is a good start.

I’ve shared these thoughts with the fabulous Paul Farmer, CE of Mind, who is leading one of three national task forces set up to help deliver the NHS England 5YFV. The other two are on cancer and maternity care. I know he wants to do the best he can. But he needs your help.

If you are part of the mental health family, and I would argue that every human being should be, please join in. Let’s seriously increase our ambition for those of us who experience mental illness, and focus hard on a small number of really important things that will really change lives. And then let’s concentrate and not squabble amongst ourselves as we set about achieving them.

That’s how winning teams win, against all the odds.

Lisa Says This

Using what I've learned to help others