compassion

What Recovery Means to Me

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

  1. Some people think that recovery is about getting better and then doing everything possible to forget that you were ever once unwell. But that would be a complete waste of the experience.

  2. Our minds are like our bodies. They never forget being hurt or ill. If we let them, they will incorporate the scars from our experiences and use them to make us stronger and better people.

  3. Recovery is about celebrating everything that has happened to us as an essential part of who we are, even those things that we may prefer to forget. This knowledge will help us as we face challenges in the future.

  4. There are no sudden or miracle cures for psychological ill health. Recovery is slow, often unsteady, and at times very painful. That is why we should celebrate those who have achieved it as much if not more than those who have borne and overcome physical illness.

  5. Sometimes we must go backwards in order eventually to go forwards, for example during therapy when exploring painful memories or damaging patterns we find ourselves repeating. And as with physical wounds, we cannot truly heal if we try to bury bad feelings deep inside ourselves. They have ways of getting out and causing harm at unexpected moments.

  6. The word Recovery has nicer connotations than Rehabilitation. But they mean essentially the same thing. Recovery does not mean that everything is the same as it once was. That would be impossible. Even the healthiest and luckiest people encounter loss and pain from time to time. Recovery means harnessing the lessons we can learn from life events, however terrible, and incorporating them to make ourselves wiser, kinder but also more vigilant of the triggers that cause us pain or are the warning signs that we need to take care.

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

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

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

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

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

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

Let’s keep on keeping on

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

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

Frustration

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

Love and gratitude

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

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

Responsibility

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

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

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

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

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

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

Go us xxx

 

Happy World Mental Health Day, NHS

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

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

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

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

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

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

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

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

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

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

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

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

Here’s to kindness

My friend Sara said yesterday that I seem to mention kindness a lot in my blogs. She’s right. I’ll explain what kindness means to me.

  1. Kindness is a gift we can each share with other humans, however rich or poor we are. It is remarkable that those with the least material wealth, such as people I know in Pakistan, are often the most generous to strangers as well as family and friends.
  2. Kindness means listening to another person as they seek meaning, understanding and eventually accommodation in bad things that have happened to them.
  3. I used to think kindness was about other people. Recently, I’ve learned that to be truly kind to others, one has to start by being kind to oneself. This is harder than it sounds. And it takes a lot of practice.
  4. Kindness includes going to an event, a leaving do, even a funeral, not because you necessarily want to, but because it would mean a great deal to someone else to have you there.
  5. Kindness is about reaching out to someone who is lonely, low or appears to be in need of help, and not minding if you are rebuffed.
  6. Kindness helps you to offer genuine congratulations to someone who has worked hard to achieve something admirable, even if you aren’t feeling great yourself. You may notice that their positive reaction will make you feel warmer and more contented.
  7. We saw great kindness in Sussex on Saturday, as thousands came to pay their respects to the 11 who died in the Shoreham air crash. By laying flowers on the footbridge, observing a minute’s silence, lighting a little candle or wearing a black armband, people showed love to the bereaved and to one another. Their kindness has made a terrible time feel slightly less terrible.
  8. I’d like to think that in the UK, we might extend our kindness to the desperate people currently queuing at Calais, being smuggled in containers or risking their lives in tiny boats to cross the Mediterranean. The so-called “migrant” crisis is actually a humanitarian crisis. The people fleeing torture, war and starvation from troubled parts of the world are not “benefit – cheats”. They come from all walks of life. They are doing what any of us would do in similar circumstances. And Great Britain is not really “full-up.” Compared with them, we have great riches, including plenty of room and resources. And if helping makes things a little bit less comfortable for some of us for a while, then so what? If we were in a lifeboat, would we prevent another person from climbing in, just because we liked our own space, and leave them to drown? I hope we wouldn’t.
  9. In Buddhism, kindness is named explicitly. But as a matter of fact, kindness is the fundamental feature of all world religions, including humanism. The parable of the Good Samaritan in the Bible, after which Samaritans are named, is about kindness. People who volunteer to help others enrich our world with their kindness.
  10. There are many people who write about kindness. The blog I’d most recommend is by @johnwalsh88. Here is a link to his latest. And here is the philosophy of the author.

In the 35 years that Sara and I have been friends, she has led by example and taught me a great deal about kindness. Everyone who knows her will understand what I mean. I will be forever grateful to her for this.

This will be my last blog for a while.  I’ve a book to finish and blogging, while good practice, is too easy a distraction.

I’ll be back. Meanwhile, let’s put pressure on our government. Let’s no longer feel ashamed of images of drowned people on the shores of seas close to our green and pleasant land.

Here’s to kindness. In the end, it is all that we have to give.

 

Nobody said it was easy…

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

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

The comments fall into three broad categories.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No them and us. Only we

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

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

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

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

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

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

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

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

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

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

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

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

Because there is no them and us. Only we.

 

Lisa’s ten mental health rules

Rules are made to be broken. And anyway, these days we have far too many of them. Those who work in public services have little hope of remembering them all.

Despite all that, I wrote this list in tribute to the wonderful work of @nurse_w_glasses. And Moses. It applies as much to regulators, commissioners, leaders in NHS trusts, local authorities, private providers and charities as it does to frontline staff.

And all humans.

  1. Thou shalt always remember that the mind and the body are intrinsically linked. There is no health without mental health. And mental health is everyone’s business.
  2. Thou shalt always present a positive image of people who need help with their mental health. It is nothing to be ashamed of.
  3. Do not take the name of people who experience mental illness in vain. Never use terms such as nutter or psycho, even in jest. We may pretend we get the joke, but inside we weep.
  4. As with religious practice, working in mental health requires humility. Do not be dogmatic or rush to judgement of others. Instead, practise acceptance and loving kindness.
  5. Honour the people who choose to work in mental health, whatever career you personally have selected. They have not chosen the easy road.
  6. Killing other people is illegal. Killing oneself is not, but it carries huge stigma and casts a terrible shadow over those left behind. Learn how to help prevent suicide. And never condemn those who might consider it. They need your understanding if they are to seek help.
  7. Mentally ill people can be trusting and vulnerable. They may lack inhibition. Never abuse a position of power physically, sexually, financially or psychologically.
  8. Never treat people who experience mental illness with anything other than compassion and patience. If they make you feel angry or mean, get some help yourself.
  9. Try to tell the truth about mental illness and the current state of services. This is neither easy nor straightforward. They need serious attention and investment in the UK. There are no quick fixes. But relatively little will go a long, long way.
  10. Be hopeful about mental illness. Those who experience it from time to time can lead full and rewarding lives, with just a bit of love and support.  Like me.