Time to Change

Open dialogue

I went to a conference in Nottingham yesterday to learn about a technique called Open Dialogue. I wanted to know more because of how it has revolutionised the care of people who are in crisis in parts of Finland and the US, reducing demand on mental hospitals and transforming lives.

I care deeply about mental health services, although I don’t run them any more. These days I campaign to make them better. I volunteer in suicide prevention. I chair the Time to Change mental health professionals project. And sometimes I need help from services myself.

I wish you could have been there too. Some massive pennies dropped, not just for me but for everyone who hadn’t already appreciated the possibilities. We learned that Open Dialogue is about being with people rather than doing something to them. And we realised that here was a way to mend things that previously seemed unfixable.

Let me explain.

There are some who say that the NHS is broken. And that mental health services are badly broken.

I’m not sure that broken is a helpful way to describe things. I prefer to think of them as badly wounded. And when someone is wounded, you take care of them.

I believe that people in highly influential positions do care about mental health. They are just unsure about what to to do, other than saying they care. They know that mental health services around the country are buckling under the strain of increasing demand. Referral rates have never been higher. And continue to climb. Services find it increasingly difficult to discharge people because there is nowhere for them to go. Staff are overwhelmed, and there is a growing recruitment and morale crisis.

Added to which, successive governments say one thing about the importance of mental health but allow the opposite to happen regarding funding. Despite the fine words and promises in the response to the Mental Health Taskforce report published in February, we heard just a few weeks ago from NHS Providers that mental health trusts are not seeing the promised investment and some are reporting funding cuts in 2016 – 2017. Parity of esteem? Actions speak louder than words.

How might Open Dialogue help?

Firstly, it isn’t simply a technique for listening really carefully to people who experience trauma and distress AND their families so that together they can work out their own solutions, with support. It is also an extremely respectful way for people to relate to one another, in teams, across teams, organisations, health care systems and society. Even the NHS.

Secondly, Open Dialogue is the antidote to what is sometimes called the biomedical model, when doctor knows best and patients are compliant. This works when there is a fairly simple problem and solution. For example, a broken leg. It doesn’t work for the vast majority of health conditions in which people need to become the expert themselves if they are to lead fulfilling lives. And it certainly doesn’t work in mental health. Mental health professionals know this. But we organise and regulate mental health services as though we were fixing broken minds instead of legs.

Open Dialogue builds on what some call the Recovery Model, based on hope and fulfilment rather than simply diagnosis and treatment. It provides a method to apply a recovery-based approach, involving the whole family and team. It is the antidote to outpatient clinics and ward rounds.

Thirdly, Open Dialogue provides the basis from which to challenge many of the perverse incentives and restrictive practices that have grown up in mental health care out of fear of incident, media criticism or what a regulator might say. Such as staff spending more time documenting care than in giving care. The absolute adherence to risk assessment even though successive independent investigations show it to have limited predictive value. And risk management, which taken to extremes means that those who might possibly pose a risk to themselves or others, are cared for in inhumane conditions with no privacy or dignity, no sheets, cutlery, shoelaces, phone chargers or indeed any other item that someone somewhere has said might pose a risk. And yet we know that ligatures and weapons can be fashioned from almost anything. And that people who are ill, frightened and alone can be driven to do increasingly desperate things. The greatest risk management tool available is compassionate, skilled attention. Open Dialogue offers high quantities of that.

Open Dialogue is being used in a growing number of services in the UK. A research bid has been submitted and passed the first round of scrutiny. If successful, it will explore human, clinical and cost effectiveness, as well as developing a model that is scalable and sensitive to local circumstances.

I want to thank everyone at the conference for opening my eyes. Including Tracey Taylor, Simon Smith, Pablo Sadler, Lesley Nelson, Jen Kilyon, Russell Razzaque, Mark Hofenbeck, Julie Repper and Steve Pilling.

And to Corrine Hendy, who I first met at an NHS England event about putting patients first last year: Your journey from being locked in a mental hospital to becoming a skilled mental health professional, public speaker and highly effective advocate for Open Dialogue, is more inspirational than any you will hear on X-Factor. I want to repay the inspiration you have selflessly given.

I’m going to do what I can to spread the word.

How are you doing today?

I love talking about mental health. What could matter more? This blog is drawn from ideas I have developed (and squirreled) while thinking about well-being at work for a slot I did at the Health at Work Conference in Birmingham last week, and in advance of an NHS Employers webinar on staff well-being yesterday. I used an earlier version of this blog to give my talk, and I warmly thank everyone who contributed. Your questions and comments were wonderful and you will be able to see that i have made some changes because of them.

And what an exciting day yesterday was. Because the Girl Guides Association announced their first mental health badge. It has been developed with the excellent charity Young Minds. It uses theories about emotional literacy and resilience to help young people take care of themselves and help others. If only they had done this 48 years ago was I was a Girl Guide. And wouldn’t it be great if such an approach could be rolled out across all schools and colleges and youth groups? What a brilliant start this would give young people facing the world.

At the conference last week, we heard from companies large and small who are putting employee wellbeing front and centre of their investment strategies. And this isn’t because of any sense of duty or even kindness. They know that it pays. They want to know the best ways to help staff achieve optimum health and how best to work with employees who have physical or mental illnesses to manage their conditions and get back to work quickly and well.

If we consider the NHS as one employer, it is the largest in Europe, many times bigger than even the largest multinationals at that conference. And yet we seem slow to follow suit. I say we…I don’t work for the NHS any more. But having done so over a period of 41 years, I feel deeply concerned for its staff. So I was very grateful to take part in the NHS Employers webinar.

Well-being and resilience are the new buzzwords. They are being used everywhere. I like them. But I also have a few issues with them. If we aren’t careful, well-being strategies can feel as if they place responsibility on the individual. And I see well-being as a partnership between the individual, their employer, their co-workers and anyone else they choose to invite to help them achieve their optimum health.

I like the Maudsley Learning model of mental health very much. It shows a series of steps and explains that we are all on a spectrum of mental wellness. I like the way it removes a sense of us and them.

But there are nonetheless inherent dangers in such models. Unless you have felt the terrifying symptoms of psychosis, clinical depression, an eating disorder or any of the other hundreds of mental illnesses, you might think that mental ill-health is merely an extreme version of the distress that anyone might feel when something bad happens. Using well-intentioned euphemisms like mental distress, intended to reduce stigma, can add to the isolation felt by people who experience mental illness. It’s important to say that most people won’t ever experience mental illness, just as most people won’t ever experience cancer or diabetes.

But 1:4 of us will. And we need skilled help from our employers if we are to go back to work at the right time and give of our best. The last time I was ill, I was lucky that I got the right help. Not everyone does. And that is why I do the work I do now, campaigning to improve things in the NHS and beyond for patients and staff.

I shared two specific insights at NHS Employers webinar. The first is that we separate mental and physical health for laudable reasons but at our peril. Obesity might get more sympathy if it were treated as an eating disorder; the most effective treatments combine diet with psychological support, including CBT techniques. Exercise is known to increase endorphins and improve mental wellbeing as well as physical health. People with serious mental illnesses die on average at least 20 years too soon, mainly because of associated poor physical health. And there is an increasing evidence base that people with chronic physical conditions such as cancer, heart disease and strokes have a greater tendency to experience clinical depression. Which comes first doesn’t really matter.

Employers should, in my view, use this knowledge of the inherent links between mind and body to devise their wellbeing strategies and make this explicit. Bringing the mind and the body back together needs to become the next Big Thing.

And secondly, I am increasingly of the view that people who experience mental illness, who are open about it and learn to live well with it despite the massive challenges it poses, can become even better employees than those who don’t have these experiences. I’m talking about people like many of the friends I have met since I came out about my own depression. Such people show extraordinary resilience, compassion for themselves and others, patience, creativity and highly developed social skills that would be valuable in any workplace. They are truly amazing. I try not to have regrets. But one of mine is that it took me far too long to realise that my experience of mental illness could become an asset, if I let it. So now I’m trying to make up for lost time!

I want to share links to my other blogs that I think might be helpful to anyone thinking about wellbeing at work.

This one is about taking the plunge and talking about your own mental health, perhaps for the first time.

This is my plea to be kinder about obesity, because what we are doing now simply isn’t working.

This is about the things you can say and do to help a friend or colleague who is experiencing mental illness. And the things that really don’t help.

These are my ten commandments for working in mental health

This is a blog in which I thank people who have helped me in my journey of self discovery – still very much a work in progress.

And this is my Letter to You. Which you might want to suggest to someone who you think may be struggling.

Life is hard for most employees these days. Working in the NHS holds particular challenges. Stress at work doesn’t have to make people ill. But it can. Employers can make a difference. And so can co-workers.

Please take a moment to think about your colleagues, especially the ones who are having a tough time, seem a bit quieter than usual or not quite their usual selves. Ask them how they are. And really listen carefully to what they reply.

And if you are one of the 1:4 of us who experience mental illness from time to time, I say this: go us. Because we rock. 😎😎😎

Is it Rob or Helen who needs a psychiatrist?

Last night, some of us were tweeting about The Archers. Specifically, about the scumbag Rob Titchenor whose latest act of psychological warfare against his wife Helen was to hit her and then make her feel so bad that, by the end of the 13 minute programme, she had apologised for making him do it. He then delivered his coup de grace, that she was in need of psychiatric help.

As you can imagine, this generated much debate. Quite a few people said that it wasn’t Helen that needed a psychiatrist, it was Rob. They said he was sick. I believe they are wrong. And I want to explain why I think this.

Is Helen mentally ill? And if she is, could Rob have caused it?

Only someone who is clinically qualified can really answer this question. But as Helen is a fictional character and therefore unavailable for an assessment and formulation, we are entitled to make assumptions.

Helen has a tendency to depression, anxiety and problems such as anorexia in part because of her personality. She is someone who sets herself high standards and drives herself very hard. She has an overdeveloped sense of responsibility. She judges herself harshly and punishes herself for her own perceived failings. And she reacts badly to criticism from others.

She has some additional risk factors. She is, or rather was, a single mother. She has experienced several major losses: her older brother died in a farming accident when she was a teenager. Her last partner died by suicide. Also, her father was recently very ill. Her younger brother went missing for a year and her best friend felt betrayed by her.

All of this makes her vulnerable. So Rob hasn’t exactly caused it. But he has exacerbated it. And now he is using it against her.

Isn’t Rob also sick in the head?

Rob is also fictional. We only know what the writers have shown us. But again, we can make assumptions.

He certainly shows narcissistic tendencies. He cares a great deal about his own feelings, but little for those of others. He views the world as there to serve him. He constantly reminds Helen that she is Mrs Titchenor now, and that she must dress and act to please him. Henry must be “obedient”. The coming baby is “my son”. The house revolves around Rob . He is jealous and actively excludes those Helen is close to.

He also has a nasty temper, is untrustworthy and lacks morals. He hit the hunt saboteur and later lied about it. He cheated on his first wife with Helen, and lied to them both. There are suggestions he may have lied when he worked with Charlie. And there has been at least one occasion where he either raped Helen or was rough enough during sex to cause her bruising round the neck. She seems uneasy near him.

But these are not signs of mental illness. They are the tendencies of all bullies, cheats and those who get through life by using others. Rob has chosen Helen because she is vulnerable, and has resources that he wants – she has her own house, and will inherit half of the family farm business. And she can give him a child.

What about his mother? Is she mentally ill?

Aah, Ursula. She is a manipulator. She probably learned to behave like this as a small child herself because her own family was dysfunctional. Her relationship with Rob is deeply dysfunctional too. She wants to please him, and will go to any lengths to do so. She perceives Henry’s unhappiness as bad behaviour. She thinks sending him away to boarding school will help him. Her interest in Helen’s pregnancy, labour and other intimate matters such as Henry wetting his bed is prurient. I wonder whether she is a sex abuser. She gives me the creeps.

Why can’t Pat and Tony see through Rob and Ursula and why can’t they see their own daughter is so unhappy?

Because they are nice people. And they are deeply invested in Helen having made the right choice. They feel bad about not warming to Rob at the beginning. The truth for them is too awful to contemplate…at the moment.

What will happen to Helen?

Who knows? Only the writers. Perhaps her love for Henry will override her feelings for Rob, and she will confide in someone like Tom or Kirsty and they will help her to escape. Or perhaps she will be assessed by a mental health professional who will ask all the usual questions about things that are troubling her, and leave her enough space to express the doubts about Rob that we can already see lie just below the surface. Or perhaps she will continue to be terrorised by him until something even more awful occurs. This is what happens in real life. And even if they get away, women who have been abused like this may suffer from a form of post-traumatic stress disorder for the rest of their lives.

Why do I mind when people confuse mental illness with bad behaviour and say that people like Rob Titchenor are mentally ill?

Because badness is different from madness. You can have both. But they are not the same thing. And until people stop equating them, and the media stops using terms such as “paranoid schizophrenic” as a term of abuse, we have a very long way to go.

Of course we need to provide skilled intervention for those who abuse. They may have defects in their personalities (sometimes called narcissistic personality disorder, psychopathic personality disorder or sociopathic personality disorder) that cause them to lack empathy and feel compelled to hurt others. These terms are understandably helpful in forensic mental health services. But they should not be bandied about by the rest of us. Because this is skilled work. And also because, for people who have been diagnosed with a Borderline Personality Disorder, which has at long last been recognised as an extremely traumatic, treatable mental illness, being lumped together with people like Rob under the overall heading of personality disorders is distressing and adds to their stigma and alienation.

Time to Change is the national mental health anti-stigma campaign. Over the next five years, for which most of the funding is now secured, they will be tackling some of this harder, more intractable stuff with people who need more persuading. And people like me will be volunteering and writing stuff and speaking at events in support of their campaigns until we have achieved greater awareness, understanding and empathy for people like Helen.

The use of mental illness as an explanation for people who do abhorrent or otherwise inexplicable things is part of the stigma that those of us who experience mental illness face on a daily basis. Please try not to do it. Thank you.

PS: I’ve just noticed people on Twitter saying this storyline is affecting their mental health. Hmmm….It may trigger thoughts and feelings in those who have been abused and/or experience mental illness. But it won’t cause mental illness.

Anyway, people who don’t like it can always switch off. And watch Happy Valley maybe….

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 :😎💃❤

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.

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.

Ignore Russell Brand and vote for mental health

I start by declaring an interest. I really like The Right Honourable Norman Lamb. He knows his stuff on mental health. His values are sound, and he is an unassuming, witty and extremely kind man. He has also been dealing with distressing family issues and still managed to maintain focus on his job as Minister of State for Care and Support. Senior staff at NHS England such as Professor Sir Bruce Keogh vouch for him “holding our feet to the fire on mental health.”

Yet I became tetchy on reading the Liberal Democratic manifesto mental health promises yesterday. It feels a bit rich that a party that has been in power for a full parliamentary term, albeit as a junior partner in a coalition, should be making promises now after 5 years of not making these things happen.

My supporting evidence:

I:4 of us will be mentally ill in any one year, according to the Mental Health Foundation. Yet mental health services are still the poor relation within the NHS family, missing out on new money and bearing the brunt when public sector “efficiencies” are required, as they have been during the last parliament. Under the coalition, this imbalance has grown measurably worse. The funding promises made in yesterday’s Lib Dem manifesto will to some extent redress the balance – but only if they come to fruition.

I will need persuasion to believe that we will see this money, given the promises made in 2010 not in the last Lib Dem manifesto, but after the coalition government was formed. I was chairing the Mental Health Network of the NHS Confederation at the time, and was invited to speak at the launch of the coalition’s mental health strategy alongside Mr Lamb’s predecessor Paul Burstow. We felt excited and optimistic that parity of esteem between physical and mental health services was being promised at the start of the new parliament and ahead of any other health announcements. What happened?

Children’s mental health services, one of the top priority areas in the manifesto, are in a state of particular crisis. This is because of cuts to local authority funding of front-line services in schools and those provided by the third sector, reductions to NHS community services, substantial increases in referrals linked in part to the downturn but also modern pressures felt by young people. There has been near-chaos in the commissioning of these services arising from changes to the NHS and Social Care Act, which although a Conservative-led initiative which they now admit was a mistake, could have been halted or at least improved by the Lib Dems. One of the most troubling outcomes is that sick children now wait regularly in police cells while desperate clinicians and managers scour the country for a suitable hospital bed. Staff are overwhelmed, and parents are desperate. Given that 75% of mental illnesses start, as mine did, before the age of 18, and that early intervention is now known to make such a difference, this situation is not only cruel, it is also extremely short-sighted.

According to W Edwards Deming, if you don’t measure, you can’t manage. Mental health services have been crying out for a commissioning currency so they aren’t expected to respond to infinite levels of demand under open-ended block contracts. They need national benchmarks, targets and some form of payment by results, otherwise bids for increased funding will continue to be trumped by those for diseases such as cancer or heart disease, where there are a wealth of measurements. This was promised by the last Labour government in 2005 and by the coalition in 2010. It appears again in this manifesto; if the Lib Dems help to form the next coalition, will we be third time lucky?

Here are Royal College of Psychiatrists’ President Professor Sir Simon Wessely and Time to Change ambassador Alastair Campbell explaining why in their view, when it comes to mental illness and mental health care and support, government actions speak louder than words.

It’s not just the 1:4 of us who experience mental illness who should carefully consider these promises and those made by each of the other political parties. 4:4 of us will be voting on May 7th, or rather, we have the right to vote that others have died to get for us. This will apparently be the closest election in a lifetime. We have the greatest ever diversity of candidates. If we don’t each exercise our democratic right, we risk allowing those more certain than us about matters as important as mental health to decide who will run the country.

According to pundits, the outcome of the election is likely to be another coalition with at least two parties. This time, whoever forms the new government, I intend to make a fuss right from the beginning about funding and evidence-based support for mental health services. The more of us who do, the more they will realise that we mean business.

The recent dog-whistle headlines about the aircrash co-pilot show that we have a way to go in tackling the stigma of mental illness. So please ignore Russell Brand and vote; being disenfranchised would be really bad for our mental health.

I think we are pretty amazing

I didn’t sleep much last night. I’d agreed to go on the Today programme at 07.40 to give my perspective on this week’s coverage of the terrible plane crash in the Alps, particularly the implications that it was caused by someone with depression.

I only came out about my own experiences of depression a year and a half ago, even though it has come – and gone – since I was 15. I’m not unusual; 75% of mental illnesses start before the age of 18. I’m also not unusual to be shy about sharing. There is still massive stigma. Including self-stigma, in which I am an expert.

Very gradually, things have become easier for the 1:4 people who experience mental illness, through campaigns such as Time to Change. Or so we thought.

I’m not going to repeat how disgracefully the majority of the print and even broadcast media have behaved this week. Others including Matt Haig, my 17 year old Twitter friend Stella and Stephanie Boland have done so much better than me.

And deepest thanks to Paul Farmer, CE of Mind, Sue Baker, Director of Time to Change and Professor Sir Simon Wessely, President of the Royal College of Psychiatrists for being so quick off the mark and setting the record straight. They have done a stunning job.

What I want to say is that, every time I have an opportunity to speak about the stigma that still affects people like me, I feel a little more nervous. It is an increasingly heavy burden of responsibility. For some, the impact of their mental illness means they lack the voice and opportunity to speak for themselves. They have to rely on others. And that means those of us who can must act with great sensitivity and respect. Including towards those who have lost someone to suicide, anorexia or lack of self-care.

Mental illnesses, by definition, mess with your head. They make you believe horrible, negative things about yourself, question your worth and the very point of your existence, and cause you to feel hopeless about the future. In some cases, people lose touch with reality. They hurt themselves, either deliberately or by failing to take due care. It is rare that they hurt other people. Far more rare than people who are NOT mentally ill hurting others.

There are other illnesses that carry stigma, but mental illnesses are in a class of their own. The media coverage this week may have set matters back.

But what gives me hope is that after speaking on the radio, I have heard from hundreds of people I didn’t previously know via social media. Many are like me, timidly but courageously speaking up about their own experiences in order to encourage people who are ashamed of their mental illness to seek help.

Together, we can metaphorically hold hands, step forward together and show that we aren’t murderous monsters. And that, with love, support and most of all our own courage, we can make a creative and compassionate contribution to the world.

Thank you to all my old and new friends. I think we are pretty amazing.

Lisa Says This

Using what I've learned to help others