compassion

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.

 

Sussex will never be the same. But we stand together

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

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

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

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

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

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

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

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

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

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

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

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

 

Nobody said it was easy…

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

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

The comments fall into three broad categories.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No them and us. Only we

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

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

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

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

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

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

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

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

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

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

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

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

Because there is no them and us. Only we.

 

If I ruled the world…

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

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

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

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

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

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

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

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

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

1. Suicide prevention

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

2. Mental health within the NHS

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

3. Integration

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

4. Public health

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

5. Making the business case

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

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

6. Research and improvement

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

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

 

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

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

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

Don’t be mean*

In my blog last week, I mentioned that my next one might be contentious. This is it.

Tonight, Health Service Journal (HSJ) have announced their inaugural list of Patient Leaders.

I am stunned to be on it. Plus a little bit anxious and also prouder than I have felt for a long time. Here’s why.

I’ve been on a few lists in my time. I remember the first one of influential women in the NHS. Some of us got a bit of stick for that, as did HSJ – “What about the influential men?” came the cry. Take a look at the top of the NHS, and you will see why there is a need for a list with just women on it. Even more so for Black and Minority Ethnic NHS leaders. Hats off to @NHS_Dean who has been open about changing his mind recently regarding quotas on Boards. It’s not too late to join him.

There are many other reasons why such lists can cause controversy. One is that they seem to include all the obvious people, who have reached positions of influence “just” by the nature of their jobs. Who have apparently been in the right place at the right time. Whose mistakes haven’t yet caught up with them. Or who are lucky enough to have a face that “fits”.

I’ve been there and even made such remarks. And I know that, although doing so might have made me feel better about not being on some list or another myself, it also introduced a tiny chip of meanness into my heart which I then had to work very hard to eradicate. Or it risked undermining me and any future good I might bring to bear.

To the people who are feeling mean about this latest list, I say this. Yes, some of the names on it may seem obvious to you. But only they know the personal cost of being there. And yes, there may be some, me included, who are relatively late entrants to the patient leadership world. But that doesn’t make them, even me, unworthy, nor does it in any way diminish the extraordinary contribution of those who have been doing this labour of love for much longer than the rest of us.

Being a member of an exclusive, perhaps even excluded club may feel good, especially one whose purpose has been to act as a ginger group. But patient leaders are doing work that is too important to remain on the outside looking in. One day, and I don’t think it will be all that long, we will see experts by experience appointed into paid leadership roles right across the NHS and care system, as a matter of course. We must of course protect their independence. But we must also stop seeing them as an optional, expensive, fortunate and patronised extra.

There is nothing I did throughout my 41 year NHS career that was harder than sharing my own experiences of mental illness, facing up to going back to work after my last episode of depression, and then retiring, I hope with dignity, to forge a new career as a writer and mental health campaigner. I know it will have been equally hard for others to have followed their personal, not always chosen, path.

So let us warmly thank EVERY patient and carer leader for the courage, wisdom, creativity and generosity they bring to improve our less than perfect, still beautiful, deeply precious NHS. And to all those on tonight’s list, here’s to you. I feel humbled to have joined your extraordinary ranks.

*With thanks to the extraordinary Kate Bornstein, whose philosophy on life is “Do whatever it takes to make your life more worth living. Just don’t be mean.”