mental health

The hardest thing of all

I’ve been watching the desperately sad story unfold of the awful, untimely, preventable death of a young man with learning disabilities. Only those most closely involved can comment on what led to his death. But what happened afterwards has become extremely public.

Having done the job I once did, I feel the need to share some thoughts. I know this may provoke strong reactions. But to be silent suggests complicity about unfair discrimination of vulnerable people, lack of compassion and the opposite of openness in how the NHS too often deals with mistakes. And I am not complicit.

The media, including social media, can be a massive force for good. The media can shed light on things that need to be uncovered, especially where the interested parties are far apart. And in the case of campaigning journalists like Shaun Lintern, they can help families eventually get to the truth. Although they really shouldn’t have to.

The NHS is at long last waking up to the fact that the public understand bad things can happen. The public know that the NHS is staffed by humans who, by dint of being human, make mistakes. And that there are risks inherent in almost everything that the NHS does or doesn’t do. They know some mistakes occur because staff are careless or stressed or tired or overstretched or poorly trained or badly led. And they are realistic; they also know that a small number of staff do terrible things deliberately. But the NHS still needs to appreciate that the public will not accept cover ups.

Below are some of my lessons on running services for vulnerable people, learned the hard way, by experience. And by not getting things right myself all of the time.

Running NHS services is very, very hard. The hardest part is when things go wrong and patients are harmed or die in circumstances where this could have been prevented. It is what causes those in senior positions, like the one I once held, sleepless nights and to question our own fitness to lead. If leaders don’t have sleepless nights like this, they are almost certainly in the wrong job. Being a decent leader in one of these very hard jobs starts with having respect and compassion for those we serve. And the humility to admit mistakes.
Leaders in the NHS need to be curious and ask questions. They need to seek the truth, however hard this may be. They should surround themselves with others who are curious too and not afraid to challenge their leader. They need clinicians of the highest integrity with deep knowledge of the care they are responsible for to advise them. And although NEDs and governors who pose difficult questions may occasionally be wearisome, good leaders know that such people are invaluable at questioning what might seem obvious and to upholding core values. I may not always have shown this, but it is what I truly believe.
Some time after I left, I noticed that my old trust had been criticised for apparently taking too long to complete serious incident reviews. And I recalled my own occasional frustration at the length of time it took to receive outcomes from a review when I was desperate for answers. But now I’m thinking again. Investigating something properly takes time, especially when extremely distressed people are involved. Those investigating must be open minded and objective. They need to be released from other duties. They must not take everything they are told at face value. And they need the remit and backing to do whatever is needed to get to the facts. Timeliness is important, but not at the expense of uncovering the truth.
I recall an attempted homicide by a patient. We were so concerned to find out whether we risked a recurrence that, rather than an internal investigation, we immediately commissioned a specialist independent organisation to investigate and report to us, with no holds barred, on the care and treatment of this patient. This informed us about some changes we needed to make. This approach was later commended by the coroner. But when a statutory independent review was eventually carried out more than three years after the incident, the reviewers devoted space in their report to criticising us for having commissioned that first report, even though they broadly concurred with the findings. There is no rule book for NHS leaders. You must work out what to do yourself. And often only learn with hindsight whether you got a decision right or wrong.
The media onslaught that can occur after a serious incident can be all consuming and deeply distracting. The worst thing that can happen is that you are diverted from the real job, of providing good care and rooting out any that is less than good, into so-called “media handling”. I have been very close to getting badly distracted myself on occasions. My saving grace was probably having been a nurse first. But I don’t think that being a clinician is by any means essential to being a good NHS leader. Caring about what happens to patients is the only essential qualification.
Apologising is never easy. But it can mean so much. Apologies should be sincere, whole-hearted, unqualified and platitude-free. They may not be accepted initially. They may have to be repeated, sometimes many times. The hardest meetings for me and those I worked with during my 13 years as an NHS CEO were with families whose loved ones had come to harm in our care. But I am so grateful to those people for giving me the opportunity to listen really carefully to them and to apologise to them in person. It may take a long time to achieve such a meeting, and sometimes several are needed. The effort is really worth it.
The NHS is a microcosm of society and is institutionally discriminatory towards those who experience mental illness or have a learning disability. This is manifest in poor staff attitudes, low expectations, inadequate investment, silo thinking, paucity of data including comparative benchmark information on incidents, and the negative way the rest of the NHS treats those who raise concerns about such things. I’m doing my tiny bit as a volunteer to improve matters but there is so much more for all of us to do.
Talk of “numbers” without benchmarks and other good quality comparators can also be a distraction. Every unexpected death of a vulnerable person needs to be investigated to see if it could have been prevented. And that takes resources, which are in short supply in mental health services these days where the brunt of cuts have been made despite all the rhetoric about “parity of esteem”. Coroners are also overwhelmed; it often takes years before inquests into such deaths are completed, which is agony for the families.

It really shouldn’t matter whether the person who died was young, talented, beautiful, courageous, funny or anything else. They were a person who mattered. My heart goes put to anyone who has lost a loved one, and especially to those whose deaths were in some way preventable. You have to live with “if only” for the rest of your lives.

And that is the hardest thing of all.

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 :):):)

What Recovery Means to Me

I wrote a piece recently for HSJ about the importance of recovery in the upcoming Mental Health Taskforce report. And it got me thinking about what that much overused but, to me anyway, beloved word “Recovery” means. Here are my thoughts.

Some people think that recovery is about getting better and then doing everything possible to forget that you were ever once unwell. But that would be a complete waste of the experience.
Our minds are like our bodies. They never forget being hurt or ill. If we let them, they will incorporate the scars from our experiences and use them to make us stronger and better people.
Recovery is about celebrating everything that has happened to us as an essential part of who we are, even those things that we may prefer to forget. This knowledge will help us as we face challenges in the future.
There are no sudden or miracle cures for psychological ill health. Recovery is slow, often unsteady, and at times very painful. That is why we should celebrate those who have achieved it as much if not more than those who have borne and overcome physical illness.
Sometimes we must go backwards in order eventually to go forwards, for example during therapy when exploring painful memories or damaging patterns we find ourselves repeating. And as with physical wounds, we cannot truly heal if we try to bury bad feelings deep inside ourselves. They have ways of getting out and causing harm at unexpected moments.
The word Recovery has nicer connotations than Rehabilitation. But they mean essentially the same thing. Recovery does not mean that everything is the same as it once was. That would be impossible. Even the healthiest and luckiest people encounter loss and pain from time to time. Recovery means harnessing the lessons we can learn from life events, however terrible, and incorporating them to make ourselves wiser, kinder but also more vigilant of the triggers that cause us pain or are the warning signs that we need to take care.

Like many of you, I am reading the excellent but troubling report by the King’s Fund into the state of our mental health services. I thought Stephen Dalton, Chief Executive of the Mental Health Network of the NHS Confederation was sharp yet lyrical on BBC Radio 4 Today in his analysis of what patients and staff are facing, and in his condemnation of the government and NHS England for saying one thing but apparently doing exactly the opposite at the same time. And that made me think as well.

It seems to me that our mental health services will forever be in a state of recovery. We cannot forget the changes we have experienced, including many hard-won and stunningly positive ones, particularly in the last couple of decades. But we also must face up to the damage that is currently being caused by the ongoing service cuts, and the havoc wrought by ill-thought through initiatives to save money or confuse prevention and early intervention with specialist care. Imagine the uproar if excellent cancer services were to be cut because money was being invested in health promotion and cancer screening instead?

These cuts to mental health services are carried out through fear on behalf of providers who get ferociously criticised if they don’t accept the unpleasant medicine willingly, and ignorance rather than cruelty on behalf of commissioners who are cushioned from the direct impact of the risks faced by patients and staff. The story on the Today programme of a dangerously ill man taken by ambulance to a voluntary café as a place of safety, who then had to wait 3 days with his desperate family before a hospital place was found was not a one-off. This is the result of too many bed closures alongside near collapse of community services in many places. We must face up to what is happening and not pretend it is all OK, or we risk slipping back all too quickly to the horrors of the past.

So we must be vigilant, wise and compassionate about the state of our mental health system. For me, compassion doesn’t mean keeping quiet. It means speaking up with intelligence, evidence and passion for something that matters more to me and to those reading this than almost anything else.

Let’s get together and let’s keep making a noise. Mental health services are not some luxury item that we can do without when times are tough. They are the essential bedrock of our society. In tough times, we need to invest in them even more.

Being able to say this with courage, conviction and purpose is what recovery means to me.

Let’s keep on keeping on

We’ve had a mini mega-burst of mental health media already this week.

Surely a self-confessed mental health campaigner like me ought to be pleased about all this increased profile? Actually I feel three things:

Frustration

I feel frustrated and very angry for my fellow patients and erstwhile colleagues because of the cuts in care, both statutory and voluntary, that have led to the only “safe” place for people who are very unwell being in hospital, and to every acute mental hospital bed being full. It is not only cruel for the patients, it is deeply counter-productive. The young woman with a personality disorder languishing in an acute ward in North London (whilst funders slowly cogitate whether she should get a more appropriate service) is deteriorating daily and her problems are becoming ever more intractable and corrosive. If she had cancer, people would be doing marathons and having cake sales to support her. As it is, millions of people like her are seen by society only for their deficits rather than the assets that may lie buried deeply but are undoubtedly there. Parity of esteem? We’re having a laugh.

Love and gratitude

I feel huge love and gratitude to brave people like Professor Green for dragging mental illness and the stigma of suicide kicking and screaming out of the shadows and into the sunshine. I was moved by so much in Suicide and Me , including the rawness and vulnerability of the rugby coach as he bared his psychological all about feelings of worthlessness and what he is learning to do to protect himself from suicidal thoughts.

Today, the day after the programme was shown, I have a regular Board meeting with Grassroots, the small but highly effective suicide prevention charity of which I am a trustee. I love my fellow trustees and the amazing people who work and volunteer for Grassroots. We know what Professor Green has discovered for himself: suicide thrives where there is secrecy and shame. One of my shameful secrets used to be all those times in my life when I faked physical illness because I couldn’t get out of bed for feeling so hopeless, helpless and full of self-hatred that I wanted to stop living. It’s still very hard to ask for help, but many times easier now that I’ve outed myself. Bringing these shameful secrets into the sunlight and talking about them is our greatest tool to keep ourselves safe and to live a full and beautiful life in recovery.

Responsibility

I listened to All in the Mind this morning on iPlayer as it clashed with Suicide and Me. I salute the wonderful Claudia Hammond for dedicating her first programme of this series to young people’s mental health. I’ve written before about my concern that there is a lalala-I’m-not-listening response to the considerable increase in demand for children and young people’s mental health services. The programme takes a forensic interest in trying to find the reasons for this rise. There are various theories, mainly societal and social, but no conclusive explanation that could be used to stem the demand.

For staff working in these services, there is great anxiety – that they will miss someone extremely vulnerable, that the treatment they are giving is not sufficient, that they are spreading care and themselves too thinly. The pressure can feel close to unbearable.

We should be indebted to those who speak up about the challenge of working in mental health these days, like those on All in the Mind and the staff and leaders at Barnet Enfield and Haringey Trust on Panorama. Their courage and compassion shine.

These programmes stir up triggering thoughts and feelings in those who are susceptible. Social media can be a great source of support, but only if you are open, which also increases vulnerability. Twitter and Facebook have been very active this week.

I’ve had many thoughts myself. And I’ve come to a decision. I have more to give. I’m going to look for new ways to continue to tackle the stigma that affects not only those of us who experience mental illness, but also the availability and capacity of services to be able to tackle problems early with effectiveness and kindness. Watch this space.

And in the meantime, here’s to everyone who does what they need to do to keep on keeping on.

Go us xxx

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.

Happy World Mental Health Day, NHS

Like the Booker Prize, World Mental Health Day seems to come round faster each year. Both are a time for celebration. In the case of World Mental Health Day, it is also intended to raise awareness on the importance of wellbeing, of not stigmatising people who experience mental illness, and of the links between how people are treated – at home, at work and in their communities – and the mental health of the population, which impacts on everything, including the economy.

I will write about literature and mental health another time. Of interest to me this year is another juxtaposition with World Mental Health Day. I’m talking about the belated announcement on the state of NHS finances for the first three months of 2015/16, and what Professor Keiran Walshe has described as the triple whammy:

Lack of adequate growth funding to match the inexorably increasing demand of an ageing population and the many new treatments which patients have grown to expect
Much higher expectations on standards and staffing from regulators and the public after crises such as Mid Staffordshire
Pressures on the NHS caused by increasing problems in funding and delivering social care

There have been a number of wise comments on what this means, none better than by Professor Chris Ham of the Kings Fund. Here at 07.10 on the Today programme, he explains that the Treasury has no option but to foot the bill in the NHS and social care, OR the government must come clean with the public about the unpalatable choices that the NHS will have to make in order to balance the books.

This has never happened before in my memory. And I am worried for my former colleagues. There are now so many trusts in “special measures” that the measures can no longer be considered special. The organisations whose role was to support troubled trusts, the Strategic Health Authorities, were reorganised out of existence under the reforms that some seem to have forgotten preceded the current crisis. There seems little possibility of NHS Improvement, the new body about to be formed from the independent regulator Monitor and the Trust Development Authority, being ready or able to act with the speed, depth and impact required to stop the multiple trains about to hit the buffers.

There have already been a few high profile dismissals/resignations. And there are increasing concerns about the demands placed on those prepared to run trusts these days. Knowing that everyone else is in a similar position is not much help when you are lying awake in the small hours wondering how you will meet all the bills and not run out of cash while juggling all the other demands that keep patients safe. Doing this while wondering whether you will have a job yourself by the end of the month does not help.

Rosebeth Moss Kanter wrote about the difficult “middles of change” in the Harvard Business review in 2009. She said:

Welcome to the miserable middles of change. This is the time when Kanter’s Law kicks in. Everything looks like a failure in the middle. Everyone loves inspiring beginnings and happy endings; it is just the middles that involve hard work.

It’s worth reading the whole article and reflecting on why it is that we ignore such wisdom in the NHS.

The NHS is at the start of the most difficult middle it will ever face. At such a time, it seems vital to me that NHS trust leaders, staff, commissioners, regulators and partners do a small number of things, and take great care to avoid some others.

Remember why you are there. Hold hard and true to those values
Get in the same boat with everyone else and start rowing together in the same direction
Give praise and encouragement frequently and generously. Remember that humans need on average a ratio of 12:1 praise to criticism. People give discretionary effort when they are heartened. When they are disheartened, they lose hope and eventually give up
In particular, avoid criticism which plays to the gallery, scores points, justifies your own position or for which there is not a readily applicable solution
When making difficult decisions for which there are no easy answers, ask what you would prefer to be pilloried on the front page of the Daily Mail for. Then do that
In a crisis, kindness is much underrated. Take care of yourself and be kind to yourself. Only then can you be truly kind to others

Happy World Mental Health Day 2015 everyone. I send you much love. Thank you for doing what you do. You are amazing.

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.

No them and us. Only we

Some people call antidepressants “happy pills”. I’m not keen on this description. In my experience, they slice the top and bottom from my emotional range and I feel neither happy nor sad. Instead, they bring a calm which is welcome but can leave me feeling blunted, even flat. I know others describe similar effects.

Antidepressants helped me go back to work very quickly after my breakdown in November 2013. Skilled care from my psychiatrist and GP, timely psychological therapy, and the kindness of colleagues helped even more. Plus an over-developed work ethic. For those lucky enough to have decent jobs, going back to work and feeling useful can play a big part in our recovery.

I mention this because I want you to understand my state of mind on 24th February 2014, 6 weeks after I went back to my job at the time, running a mental health trust. Going back to work was probably the hardest thing I have ever done; one day, I hope to feel able to share why.

Anyway, on this particular day, I attended a round-table event arranged by Time To Change. Had I not been on my medication, I might have felt the need to challenge what we were being told. Or wept. Because I and the other NHS leaders present heard stuff at that meeting that we desperately wanted not to be true. And yet deep down we knew it to be so. It was like learning about institutional racism. Only this time, it was institutional stigma and discrimination from the services we were responsible for towards people who use our services.

We heard that, despite the measurable shifts in attitude of the general public (published in July by Time to Change for 2015 and again showing small but significant improvement), attitudes within the NHS haven’t shifted. In some cases, they have got worse. And the places where they appear most entrenched, as reported by those who know, ie patients, are within mental health services. And it rang horribly true.

From this meeting was born a desire amongst a number of us to do something to change this. Five months later, at my retirement party, I listed some of the things I planned to do with my new free time. One of them was to offer my services to Time to Change to help tackle this intrinsic issue within mental health services. And although I planned to earn a modest living writing, speaking and coaching others, I wanted to do this work as a volunteer. I felt I had something to pay back.

It has taken time to set up the project. But now it is underway. Time to Change are working with two mental health trusts, 2Gether and Northumberland, Tyne and Wear. Like me, they are volunteers. The trusts were selected because they could demonstrate their readiness at the most senior level to address stigma within their own services with integrity, hard work and, most importantly for me, compassion. On the working group, which I chair, we have reps from the two trusts, four experts by experience, our full time project manager, senior colleagues from Rethink and Mind who together are responsible for running Time to Change, and two people from a social research company who are doing the work on attitude measurement.

You can read more about the purpose and details of the project here on the Time to Change website, including quotes from those taking part. And Community Care have published a piece about the project today.

Stigma towards those who need mental health support is alive and kicking within the NHS. It manifests itself with lack of empathy towards those who self harm or are otherwise in crisis, as described in the recent CQC report; low expectations from clinicians about future prospects for people who experience serious mental illness; lack of investment in research into new treatments; marginalisation of mental health in the way the NHS is planned and organised; and unfair treatment of mental health services by local and national commissioners in their expectations and funding decisions.

But I have high hopes. There is an absolute acceptance amongst those involved in our project that things need to change. And that instead of simply asking people who work in mental health to be more compassionate, that the change needs to start at the most senior level. We have sign – up for this work from the very top of NHS England, Mind, Rethink, Time to Change and at the trusts. And we agree that for staff to work respectfully with patients and treat them with optimism, expertise and compassion, they need to experience the same from their colleagues, including their most senior leaders, their commissioners and their regulators.

It was a long time ago that I was told by a nurse that I was a waste of space and that looking after me after I had hurt myself took him away from patients who were truly deserving of his care. At the time, I absolutely believed him. It took me many years to unlearn what he said. And it nearly broke my heart to hear, at that meeting back in February 2014, that such attitudes are still relatively commonplace today. The difference now is that we are talking about them. And acknowledging a problem is the first and most important step towards solving it.

Please don’t just wish us luck. Please join in and help us tackle stigma towards people like me and millions of others who experience mental illness from time to time. I’ve been off my antidepressants for several months now. I feel like the whole me again, which has one or two negatives but is mostly pretty amazing. And whilst I am doing lots of things to look after my mental health in my new world, who knows if I will need treatment from mental health professionals again one day?

Because there is no them and us. Only we.

Lisa Says This

Using what I've learned to help others