compassion

Respect

Lisa oval

With growing frustration, I watch how friends who are “experts by experience”* are increasingly being treated by the NHS and the various bodies tasked with inspecting and improving it. Such as being invited to be part of an inspection as an equal member of the team. But being paid many times less than anyone else, possibly even less than the living wage. Or being asked to join a group to produce guidelines or develop a new treatment or service change, bringing knowledge, skills and experiences that no-one else around the table can possibly have, for nothing or for a fee that is so close to nothing as to be insulting. Or being invited to speak at a conference but being told that “we have no budget for speakers” when clearly the conference is a commercial event AND the other speakers are being paid either by virtue of being in full time employment or a handsome fee.

I had an NHS career spanning 41 years, including 13 as a chief executive. My career as an expert by experience only began officially in 2013. But I have the benefit of an index-linked pension, which allows me to live well (although not as well as some might think because of decisions made when I was young and poor). Plus I can still earn money doing other things. So I can make choices about how I respond to people who invite me to speak at their events or otherwise draw on my experiences.

But many of my friends do not have that luxury. Opportunities to develop careers have been fractured by illness, disability and arcane, terrifying benefit rules which are themselves disabling. Their earning potential is therefore limited.

And my friends find that their generosity, goodwill and desire to help others is increasingly being abused. Despite rhetoric about patient centred care, co-production, peer-learning and a whole load of other worthy aspirations spouted by leaders in and around the NHS, those very same organisations are showing an increasing lack of respect and value for the only people who can truly help them achieve their improvement aims.

I’ve done it myself. Years ago, when I saw the size of the budget allocated to service user involvement on an important capital scheme, I knew it would be the first place I would have to go to make savings, should any be needed, despite it being a pittance compared with the professional fees being paid to architects, quantity surveyors, lawyers and the like. I did it, and at the time I rationalised it because I felt I had no choice. Looking back, I feel ashamed.

Why do we, as a society, place so little value on what matters most? Why do we pay the person who cares for our loved ones when they are dying barely enough to cover the rent on a pokey flat, whereas a man running some oil company gets £14 million a year? And why we do only see success in terms of earning potential, rather than the gifts a person brings to other humans and the planet?

I can’t change societal values. But I can make an impact on what we do in the NHS. I am lucky to have a voice. And I’m going to use it.

Wise managers understand this:

  • If you can save money and achieve the same outcomes, that is a cost saving
  • If you spend the same amount of money but do something better, that is a service improvement.
  • If you spend more money to achieve a better outcome, that is a service development
  • If you spend less money and achieve less, that is a service cut
  • But if you spend less money and pretend you are doing it to make an improvement, that is usually a lie and a cop-out

So to the people who say that they’d love to pay experts by experience what they used to pay them, or even anything at all, it’s just that the money is really tight and it’s getting even tighter, I say this. Please think again. What else are you spending that public money entrusted to you on? What really matters to you? And if you must make draconian savings, why not try being as parsimonious with your auditors, your bank, your staffing agency, all your other contractors for professional services, your regulators. Even your directors and your staff.

And let’s see what happens.

And to my expert by experience friends I say this: we have something that the NHS should treasure, our personal intellectual property. Let’s continue to be generous and compassionate in how we share it.

But let us also expect respect.

*Post Script: I understand that the term “expert by experience” is of itself problematic. It implies that all the person brings is their experience of a condition and the treatment for that condition, rather than a much wider set of skills and attributes that, almost certainly, will bring richness and intelligence to the debate and from which those who work in the system will benefit in ways they had never envisaged. If, after conversations with wise people, I can work out something useful to say on this, I will. For now, I apologise about the paucity of the term.

Post Post Script: It is less than 48 hours since I posted this blog. It has been looked at 700 times, stimulated over 500 responses via Twitter, and comments such as the ones below. It seems that I have touched a nerve both for those affected by the things I have written about, and for those working in organisations that describe one thing in their values but seem to act in a different way. That was the purpose; there is no point blogging if there is no subsequent debate.

I am grateful to all of the commentators, but especially Alison Cameron @allyc375 who helped me over the terminology and with whom I am hopefully going to be doing a double act soon on this very subject – watch this space. To Dr Shibley Rahman @dr_shibley whose original thinking brightened my Saturday evening. And to David Gilbert @DavidGilbert143 who reminded me that Patient Leadership is a useful way of thinking about this. He kindly agreed to me referencing this series of articles co-written by him and Mark Doughty @markjdoughty which I would urge anyone who wants to think more deeply about this to read.

Time are indeed tough. And in tough times, it helps to know who our friends are, and whether the values they tell us they espouse are really their true values.

I send loving kindness to everyone reading this.

 

What mental health means to me

I took part in a Twitter chat recently on the above topic. Thanks to @AnthonyLongbone for encouraging me to join in. Below are some thoughts I shared in advance.

What does mental health mean to me?

  1. Mental health is the most important part of health. And it is integral to physical health. You can’t look after your body if your mind is in a poorly way.

  2. Mental health is a continuum with optimal wellbeing at one end of the spectrum and mental illness at the other. Some people seem to be able to take good mental health for granted. For others, maintaining our mental health requires almost constant vigilance and care.

  3. Facing up to my tendency to depression has been the most important self-help step I have taken in my life so far. I’m hopeful I won’t ever sink as low as I did in 2013. But I’m not making any assumptions. And I do not plan to judge myself negatively if I do experience another bout either.

  4. Judging myself – or indeed others who experience mental illness – is the least helpful thing any of us can do. Who knows why I or anyone else has this tendency? What does matter is what I do from now on to help myself and allow others to help me. Which includes understanding my own triggers and warning signs.

  5. All serious illnesses require some degree of courage, so that we can face the pain and the treatment required to help us get better. But mental illnesses can be harder to bear than physical illnesses . They mess with your head.  They make you believe bad things about yourself and others. They take away your hope and they affect your judgement and even your personality. They make you isolated and afraid. Some people hear the voices of others telling them bad things. In my case, I only hear my own voice. When I am poorly, my internal voice is harsh, judgemental and cruel. It tells me I am worthless and evil. I am still learning how to notice that voice when it starts whispering to me, and how to answer it.

  6. Since I decided to be more open about my own experiences, I have made some extraordinary friends. Our mutual support during rocky moments via social media undoubtedly saves and enhances lives. I love the equality and the loving kindness of these relationships. We all have something to bring.

  7. It’s because of all this that I know how amazing other people who experience mental illness are. How courageous, funny, honest, thoughtful and kind – hearted.  And this is how I know, beyond all reasonable doubt, that people who have had such experiences have assets that should be applauded and sought by others. Rather than deficits to be pitied or avoided.

…………………………………………………………

After the chat, I felt a bit overwhelmed. The people who joined in were just amazing. Brave, honest, intelligent, thoughtful, generous and kind. I am in awe of them. They have far more of merit to say than I do.

In conclusion, what mental health means to me is being part of a group of wonderful people like the ones I was talking with tonight. They are helping me to become the best version of myself, which includes being kinder to myself. Through this, I can become kinder to others and do my tiny bit to help them too.

And I’m really grateful to be on that journey.

The ones who matter

Lisa oval

It was nice that 12,500 people read my two recent blogs on the mental health angle of a current The Archers storyline.

But it wasn’t all good. I am a sucker for positive reinforcement, including WordPress stats. And I doubt I will ever again get 4,500 views in a single day.

And that’s the thing about maintaining one’s mental well-being if you are one of the 1:4 people like me for whom it is sometimes a struggle. I’ve been a bit down since those two blogs. I’ve questioned whether I’ve got anything interesting left to say. And yet I know I need to write about stuff to work out what I think.

Here’s what I’m thinking about today.

Someone said to me recently, with real sincerity, that the tide is turning on the stigma of mental illness. They said they thought that the battle had been won because people like me can stand up and say that we sometimes need help from mental health services. And not be judged.

But I thought hmm.

Because it doesn’t feel that way. Not to me, nor the friends I’ve made through social media and in real life. Especially not those who haven’t been as fortunate as me and are forced to grind out an existence on state benefits juggled with occasional paid work. The positives from such work are overshadowed by arcane, dis-empowering rules of which it is almost impossible not to fall foul. Nor does it feel that way to those who live in fear of losing their homes, or who haven’t even got a place to call home. Current government policy feels deeply discriminatory and the exact opposite of therapeutic for those already experiencing the potentially crippling challenges of mental illness.

It doesn’t feel that the stigma has gone away for the people who can’t get the right mental health treatment, or even any treatment at all. As a wise person recently said, imagine telling the parents of a child with early stage cancer that they have to wait until things seriously deteriorate before they can see a specialist. And even then, the care will be rationed and probably not what is recommended. That’s the reality in many parts of the UK, for children and adults too.

I heard a senior commissioner say the other day that they would love to invest more in mental health, but the evidence just isn’t strong enough (my italics). What planet are they living on?? True, spending on mental health research is woeful. But there is nonetheless masses of really good evidence about what works. And it starts with intervening early via properly funded local services delivered by highly trained, well-supported staff.

What also doesn’t help reduce stigma is the almost constant service redesign and reconfiguration. Indeed, the billion pounds of “new” money announced by Jeremy Hunt after the Mental Health Taskforce Report was published is not, in fact, new at all. It has to be achieved through efficiency savings. I know from experience that such initiatives rarely achieve all that is promised. And they almost never take account of the collateral damage to staff well-being.

Not to mention competitive tendering, which mental health services face at disproportionately greater levels than other parts of the NHS. Plus the drip-drip reduction in mental health funding and the erosion of national data collection so that it takes the skills of investigative journalists to uncover the ongoing cuts that have been made over the past 6 years despite government rhetoric about parity of esteem for mental health.

And what adds further to the stigma is that the media rarely mention mental illness or mental health services except when something appears to have gone wrong. Where are the motivational stories like the ones about people who have “beaten” cancer? Even when no mistakes have been made, the finger of blame gets pointed. Imagine how this feels to staff who work in these services, being pilloried for doing a job that most people couldn’t begin to contemplate because they don’t have the skills, patience, courage and compassion needed to work in mental health. They should be lauded and supported, not ignored and criticised.

So no, the stigma of mental illness is not a thing of the past. It is ugly, cruel, destructive and ever-present. Like racism, sexism and homophobia, it will never truly go away. We have to be vigilant. And we have to keep working at it.

Despite the job I once did, it took me until I was 58 to get over my own self stigma and admit that I experienced clinical depression from time to time. Coming out about it was the hardest but also one of the best decisions I ever made. I take my hat off to others who have got to that point sooner than me. You are braver than anyone who hasn’t been there will ever know. Showing the world that people who experience mental illness have hopes and ideas and other wonderful human assets to share is the best way there is to make others want to join us and change the way things are.

Writing about mental health and The Archers was fun. Writing this piece was harder but far more satisfying. I will try not to care how many people read it.

Because the ones who do are the ones who matter.

 

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. 😎😎😎

One day mental health stigma will be a distant memory

Back in 2014, the team at Time to Change held a round table event that forced those of us who care about NHS mental health services to face an unpalatable truth. Which was that 1 in 3 people who used services experienced lack of compassion and even stigma from where you would least expect it, those working in those very same services. This finding has been repeated several times, and featured again in last week’s Mental Health Taskforce Report.

In August 2015, I wrote about how this made me feel and about the Time to Change project I volunteered to chair here. And about the negative reactions it initially invoked here.

Now it’s time to pop my head above the parapet again.

Along with some amazing people, including 4 experts by experience and senior colleagues from our 2 pilot sites Northumberland, Tyne and Wear NHS FT and 2Gether NHS FT, we have carried out some action research directly with NHS staff to explore what gets in the way of compassionate care and the shifts in attitude that are needed.

It hasn’t all been plain sailing. But we have learned a lot, especially about what works. And this week we are launching a campaign within 6 volunteer mental health trusts, which include our 2 pilot sites plus 4 others. From the early work with our pilots, we know that staff value time out in a safe place to talk about attitudes and values, and to discuss why sometimes they fall short of providing care to a standard they aspire. The materials are being made available online via Time to Change across the whole NHS.

I want to make a few things clear from a personal perspective. We won’t shift attitudes by finger pointing and blame. The people at Time to Change know this. Their approach is positive, supportive and empathetic. They know what they are talking about. They have achieved measurable, sustained success in shifting public attitudes over 7 years of work. Our project with NHS mental health professionals builds on the same approach, tailored to local circumstances.

We are acutely aware that staff who work in mental health services are under greater pressure than ever before. We know this from the hard-hitting findings in last week’s Mental Health Taskforce Report. Our project doesn’t deny this. But we are operating in the real world. And we have to start where we are now.

Stigma is an ugly word. And the stigma of mental illness is deep-seated and far-reaching. It manifests in the way mental health services get side-lined. Two weeks ago, my old boss Lord Nigel Crisp published his report about access to mental hospital beds. With charm and precision, Nigel ticked off Nick Robinson on the Today programme for trying to change the subject to the junior doctors’ dispute.  Nigel pointed out that it was illustrative of the very problem mental health services face, lack of sustained attention. And whilst the Mental Health Taskforce Report got top billing on the day it was published, we also know that it will disappear without trace unless we all stop talking and actually do something to turn mental health into a priority.

Not all journalists are guilty of stigma. I thank Shaun Lintern at HSJ, Andy McNicholl of Community Care and Michael Buchanan at the BBC for their sterling work uncovering swingeing cuts over the past four years, which some still deny despite the evidence laid bare.

Stigma exists amongst some politicians and parts of the NHS. The rhetoric of parity of esteem has been trotted out whilst at the same time commissioners, faced with unpalatable choices, are allowed to disinvest in those services people are least likely to make a fuss about, i.e. mental health. And not just in the NHS, but also the third sector, where much vital provision has been wiped out in recent years and is at least in part the cause of the current mental health bed crisis besetting most of the country.

The unkindness I experienced many years ago from a nurse in A and E is repeated across acute hospitals and other parts of the NHS daily. I recently heard an acute trust chief executive say this: “These people don’t belong in A and E.” (My italics).

So who exactly are “these people”? They are people like you and me. And people like him think we are undeserving. And many, including him, still believe being mentally ill is somehow our own fault.

Our Time to Change project isn’t aimed at tackling everything at once. We have to eat this elephant together, in bite size chunks. Working with Time to Change and supported by NHS England, I know we can succeed.

Lisa Rodrigues CBE

Writer, coach, mental health campaigner. And a recovering NHS Chief Executive

This piece also appears today in the Health Service Journal

Cock-up or conspiracy?

Blogging can be addictive. I try to limit myself to one a week. But after the Secretary of State announced yesterday that a pay “settlement” will now be imposed on junior doctors, given that extended negotiations have so far failed to reach a conclusion satisfactory to all parties, I feel I have something to say.

I know many junior doctors, including the daughters and sons of friends plus those I meet directly through ongoing contact with the NHS. These young people, who hold other people’s lives in their hands on a daily basis, are sensible, bright, compassionate, committed and driven. I don’t understand how a Secretary of State who was brought in to settle down the NHS after the mess the previous one created can have allowed himself to get into an intractable dispute with so popular and articulate a group of NHS staff.

But nor do I buy into conspiracy theories about privatisation by stealth; there would be better ways to achieve this than by alienating an essential section of the workforce. It is far more likely to be a cock-up. Someone probably advised him that the existing contract was, as most senior NHS managers including senior doctors know, overly complicated and no longer fit for purpose. (If indeed it ever was. This is not the fault of the junior doctors, by the way.)

And so he decided to immortalise his legacy as a moderniser by spearheading the introduction of a new contract. But because he isn’t a manager himself, he set out without understanding that the only way to change the contracts of any group of public sector staff, especially doctors who have possibly the most effective union in the country to negotiate for them, is to improve on their current terms and conditions. There is nothing that upsets people more than attempts to introduce changes that significantly worsen their position. And at the heart of the dispute is the fact that for everyone else in the NHS, Saturdays are not part of the core working week. And although there is little choice for the majority but to work on at least some Saturdays, doing so incurs additional payment. (That people in shops and restaurants don’t get paid extra for working on Saturdays these days is of no relevance.)

The Secretary of State also fell into a communications trap by talking about a 7-day NHS, when the group he was targeting already work shifts across 7 days. He chose the wrong example. To get a true 7-day service, he needs to persuade all other NHS staff who don’t already do so to work shifts over 7 days. And to find considerably more of them because spreading 5 across 7 just makes a thinner spread. And that would cost a great deal of money, which he doesn’t have.

What I know from my junior doctor friends is just how difficult it is to get onto a training programme that takes account of personal circumstances. These young people are already in their mid – late 20s. They have slogged away for 10 years plus to get to where they are now. Only the most elite get the pick of training jobs in university teaching trusts; everyone else is bundled around the country with little choice on short placements that have to be filled, because they are the medical workhorses of our NHS. This plays havoc with personal relationships and family life. So they are not a group for whom losing what little control they had over their Saturdays was ever likely to go down well.

With all this in mind, chief executives of trusts work to a bottom line, which is to deliver safe services within the money available. And 20 of them have found themselves in an invidious position.  These 20 were asked whether the latest offer being made was, in their opinion given the circumstances, fair and reasonable. Having replied in most cases that on balance, they felt that it was, they found their names being included in a letter from the chief negotiator to the Secretary of State in support of something about which they had not been asked, ie an imposed settlement. For the sake of the point I want to make next, it doesn’t matter whether this was a cock-up or conspiracy. (I suspect cock-up, because they are far more common. And we humans make mistakes.) The letter caused a massive flurry on social media. And these people had to decide whether to keep quiet, incurring the wrath of their own junior medical staff and others who support the doctors, or come out and say that they had not agreed to the imposition, potentially putting their own careers at risk. That the majority did the latter fills my heart with hope for the NHS.

And my key point is this. To be a leader in today’s challenging NHS, there are seldom going to be obvious right answers. You will frequently be faced with dilemmas of this nature. If you don’t have the nous to work out when to put your head above the parapet and when to stay quiet, plus the courage to do the former at the very time it seems most lethal to do so, you haven’t got what it takes.

In other news, the Head of Google, Europe told the Public Accounts Committee yesterday that he couldn’t remember how much his own remuneration package was. Either he really couldn’t, in which case he is an idiot and has no right to be in charge of anything. Or he dissembled because he knew it to be a sum of many millions, embarrassing with Google under fire for paying so little corporation tax. Chief Executives of trusts have their salaries published every year and get pilloried for it in newspapers like the Daily Mail. And they all know exactly how much they earn, which is a tiny fraction of the forgetful man from Google. And yet each carries many times more responsibility than he would have a clue how to handle.

My worry is that there is a scarcity of people with the right attributes and courage to do these NHS leadership jobs. And we really, really need them. As we do our wonderful junior doctors.

A bit of courage

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

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

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

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

Go us. Thank you.

The ones left behind

It’s been a month for losing people from the soundtrack of our lives. David Bowie, Alan Rickman, Mott the Hoople and Bowie drummer Buffin, and Glen Frey of the Eagles. If there is a heaven, may they rock on up there together.

But ….I’m also weary of gushing eulogies from people who never saw any of them live. Public outpourings of grief about people we have never met started to grow to excess after Princess Diana’s death. And social media has allowed this to multiply. There is even fear of criticism among those in the public eye if, on hearing about a death, they don’t immediately tweet a brilliant yet touching epitaph.

I remember being told at school that “empty vessels make most noise”. It’s not the kindest quotation from Plato. But there is truth in it.

Perhaps I’m feeling less sympathetic because my small family got even smaller with the loss of a dear relative over Christmas. She was a very private person. I don’t have permission to say anything about her or other family members. All I can say is that I have been very sad. Which is horrible, although better than depression because it a clean emotion and has a point. It also puts the sadness I feel about David Bowie et al into perspective. I miss them being there. But I am not bereaved by their deaths because I didn’t know them.

When someone we know dies, whatever their age, we can help by remembering them with love and by caring for those closest to them who are left behind. There is usually a flurry of activity at the time of a death. Phone calls and social media messages can all help. Even better are letters and cards that the bereaved person can read time and again. The right words may be hard to find, but they can bring great comfort. I know this.

What helps even more is keeping in touch with the person who is bereaved. The first few weeks and months are bewildering and lonely. Bereaved people may seem to shun others, but they desperately need social contact. Most people will at some stage go through a phase of feeling angry, sometimes for being left behind, sometimes even directed towards the person who has died. This is normal. The loss they feel is raw and cruel. They need an outlet, someone to hear and acknowledge their anger and allow it gradually to dissipate.

Later, when they can bear it, they will find that they yearn to talk about the person who has gone. To go through photographs and remember things they said and did together. The kindest thing you can do for them is to listen really carefully, to show true interest, and do nothing to stifle these reminiscences. They are vital for the gradual healing process.

Sometimes being bereaved can make you feel like a pariah. People seem to cross the road to avoid you. You may no longer be invited to social events where you were once welcome. I have heard those who are widowed and parents who have lost children speak of the added pain this can cause. And it is so unnecessary. Grief isn’t catching. What difference does it make to have an odd number at dinner, for example, or for someone to attend a birthday party even if they no longer have a child to bring?

I hope the families of David Bowie, Alan Rickman, Buffin and Glen Frey encounter kindness, and have friends who stick around for them over the coming months and years. The accolades of fans will offer some small comfort. But like any of us, the thing they will most need is love and support from those close to them.

There are many ways to be a good Samaritan. And the best one is by being there. I send love to all who have lost someone dear. May their dear souls rest in peace. And may those who are left behind find comfort and kindness from others as they grow accustomed to their loss.

 

Blessings

books

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 :mrgreen: :😎💃❤

 

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.