friendship

Nine lessons and three carols

Cuddles and William declare an uneasy Christmas truce

Cuddles and William: an uneasy Christmas truce

December 2015 will be a lean month for this blog of mine. At last my book has passed the 3/4 mark; writing it feels less like the psychological equivalent of self-flagellation than it did earlier in 2015. I must keep at it before the muse goes again. I’ve also had a piece accepted for Guardian Healthcare, plus a few talks and a couple of other projects on the go. The blog has slipped down the priority order.

But as I contemplate my 61st Christmas, I’m thinking of lessons learned from the previous 60. Painful and salutory, to me anyway. I’ve jotted them down. I’d welcome hearing yours.

1. Presents

We all know this, but Christmas is about retail. Shops and online sellers expect to do more business in one month than in the other 11 added together. Don’t be a mug. You don’t have to fall prey to them. I have, so many times, and it has never made me happy. Instead, make stuff. If you don’t have time, or your efforts really wouldn’t be appreciated, give to charity in someone’s name. Choose a second-hand book. Put a photo album together. Give away something of yours that you know the other person likes. Or give a promise – a plan for coffee with a friend on a miserable January day gives you both something nice to look forward to and lasts longer than at item bought at vast expense from a retail giant.

2. Cards

Getting all your Christmas cards written and sent is not a competition. If you like doing them, that’s lovely. But telling people yours are all posted can sound boastful, especially if they are having a hard time. Also, try to not to be annoyed at what you perceive as one-upmanship when you get the email from x who is donating money to something for Syria instead of cards this year. Be grateful for their kindness instead.

3. Getting drunk

A bad idea on any day, especially as we get older and alcohol seems only to have negative effects. But on a day so loaded with emotion, it can be disastrous. I once spent Christmas afternoon and evening asleep after overindulging at a neighbour’s Christmas morning do. Steve took the children for a walk on the beach and we had pasta for dinner because I couldn’t face turkey. Eventually I gave up alcohol altogether. You don’t have to be so drastic. But sparkling elderflower or a nice cup of tea will give you a merrier Christmas.

4. Fresh air

Houses got steamy at Christmas with all that cooking and hot air. Plan a walk. It will blow away feelings of resentment or sadness if you have them and lift your mood even if you don’t.

5. Worship

When Tanya Gold  told her rabbi she didn’t believe in God, he replied “You think he cares?” I’m unsure about God myself. My mother believes, so when she stays with us at Christmas, I go to church with her. We try a different one each time. We are like Michelin Guide visitors for the Church of England. (Nice sermon, shame about the vicar’s surplice.) This year, she’s with my brother. I will go down to the beach instead and give thanks for nature and human kindness. Worship anything you like. Except money.

6. Food

In the past I’ve fallen prey to Good Housekeeping Christmas cookery guides and spent many stressful hours producing a groaning table of rich food which no-one really wanted. You don’t have to buy into anyone else’s plans of what to eat at Christmas. Cheese on toast can be nice.

7. Hopes for the day

Spending too much on presents and listening to Alyd Jones on the radio won’t change anything. Only you can do that, by thinking about things that are important to you. As Maya Angelou said, if you don’t like something, change it. If you can’t change it, change your attitude. I’m working on mine.

8. Hopes for the future

As for the day

9. Everyone else is happy

No they aren’t. And the ones who tell you how happy they are, are probably the unhappiest of all. If you must read articles in Hello about how celebrities spend their Christmases, do it with a massive pinch of salt. The way to happiness is not via designer houses or even another person. It is only when you have learned to love and accept yourself that you can truly be happy and then be in a position, should this arise, to love someone else unselfishly.

Away in a manger

People tend to go on about children at Christmas, and for those yearning for parenthood, this is an added unkindness. All I can say is, if you have babies, yes, they are amazing. But they also bring havoc, anxiety and fear. Imagine being a refugee parent? If you are lucky, they will grow up safely and turn into friends.  Being a wise auntie or uncle to real or pretend nieces and nephews brings parental joys without quite so much of the heartache. The real heroes for me are the people who help other people’s children through charities. And by fostering and adoption. Thank you to all such people everywhere; you rock.

Little donkey, or puppy or kitten

Lovely but messy. Unlike a child, you can take them back but you will break their furry little hearts and risk permanent guilt yourself. Offer to help out at an animal shelter. You will then make a better decision about animals in your house.

We got Cuddles, one of our rescue cats, just before Christmas 1999, and almost immediately I went down with flu. She spent her first week with us sleeping on my bed thinking she had come to live with a bedridden elderly lady, which is a pussy-cat ideal billet. When I arose, she was indignant. She died aged 17 in 2012. We still have William to keep us company. Unlike us, he doesn’t miss her at all.

In the bleak midwinter

If you get depression, winter can be peak time. Two years ago, I was coming out of my most sudden, worst ever bout. Christmas was the most casual we have ever had. There were no expectations and so we just had a nice time. I never again want to feel like I did during November and December 2013, but I’m trying to replicate the low-key Christmas that resulted. It was a gift I had not anticipated, all the more precious for it.

If I don’t have a chance to say it again, happy Christmas. May yours be filled with what really matters to those you care about. And to you.

 

Please do this and please don’t say that

Since coming out about my on-off relationship with depression, I’ve lost count of the number of people who’ve asked me stuff and told me things. Some have been extremely helpful, some not so much.

Here’s my handy guide on what not to say to someone like me:

  1. Please don’t ask “So why do you think you get depressed?” If I knew that, I’d fix it. I’m trying to find out, but it’s a work in progress.
  2. Please don’t say “Have you thought about exercise?” You bet I have. And now I’m in recovery, I’d love you to come for a walk or bike ride with me. And see if you can keep up.
  3. Please don’t say things like “When I retire, I’m worried I might get depression like you did. How can I avoid it?” I don’t know! What I do know is that depression isn’t caused by one thing. If you’ve got to this stage in life without experiencing it, chances are you never will. But I can’t make any promises.
  4. Please don’t say “When I get depressed, I always…. (insert favourite pastime/exercise/indulgence.)” Thanks for the information, but you haven’t had depression. Or you wouldn’t say that.
  5. Please don’t say ” Do you think talking/writing about your depression might make it worse/bring it on?” No I don’t. Sure, exploring this stuff is painful. But psychological wounds are like physical ones. They won’t heal if you simply cover them up. They will fester. To heal properly, wounds need sunlight and oxygen. Being open is the antidote to the nasty old stigma which makes people who don’t experience mental illness feel embarrassed about it and people like me who do feel ashamed.
  6. Please don’t say “I never thought of you as the sort of person to get depression. I always thought you were so strong.” Yes. And that’s part of the problem. If you read Tim Cantopher’s Depressive Illness: The Curse of the Strong, it will help to invert your thinking about depression. As it did mine.
  7. If I’m not on medication, please don’t tell me that I should be taking it. If I am, please don’t pass judgement, or ask if I have thought about talking therapies instead. And please don’t call antidepressants “happy pills”. People with physical illnesses such as cancer or heart disease don’t need well-intentioned, uninformed amateurs to opine on their treatment. People with mental illnesses are the same. It is neither good nor bad to take medication. It is just sometimes an essential part of getting better or staying well.
  8. Please don’t say “You seem too jolly/optimistic to get depression.” Again, do read Tim Cantopher. Depression is rarely a permanent state. For me, the stark contrast between how I feel when depressed and my state when well is close to unbearable.

Depression isn’t the same thing as sadness. In my case, it is a combination of self-loathing and emptiness. But we are all different. See my letter to you for further info. It includes the details of the book I mentioned above.

Having listed some Please Don’ts, here is a precis of what I have found, through experience, really helps.

Do please:

  1. Hold my hand when I need it
  2. Be patient
  3. Listen carefully and don’t overreact
  4. Resist judging
  5. Encourage me to seek professional help if I seem to be going round in circles
  6. Tell me you won’t allow me to let this thing define me
  7. Avoid defining me by it yourself
  8. At the same time, allow me to incorporate it into my life.

Like anyone who experiences any form of mental illness, be it lifelong or more fleeting, I am so much more than it. But it is also part of me. I am learning to accept this, as I hope you can too. Not for me, but for the 1:4 people who experience mental illness from time to time. Because this is the only way we will truly eradicate the stigma that so besets us.

Thank you for your kindness in reading this. It means a lot.

Happy World Mental Health Day, NHS

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

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

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

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

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

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

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

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

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

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

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

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

Welcome back

Hullo you.

So you’re back, are you? Please forgive me if I haven’t exactly laid out the red carpet. It’s just that the last time you were here, you caused havoc. It took me a year to deal with the consequences. You wore me out. My family and friends were extremely glad to see the back of you. My own feelings, as you well know, were more mixed. Because I recognised that you had, quite literally, become part of me.

What I can tell you, as you so cleverly insinuate yourself back into my life, is that I’m better prepared for you this time. I’ve done a lot of soul – searching. And I’ve had professional help. I have slowed down my thinking, and learned the painful lesson of sharing, with a few trusted people, that I’m not always OK, and in particular the devastating effect you can have on me if I don’t take care.

I’ve also made some new friends, who know you too, or someone like you. At great personal cost, they have developed ways of living in harmony with their cruel demon. I am indebted to the generosity of these new friends. I am even grateful to you, because, were it not for your last, most shocking visit, I would never have met these extraordinary people.

I have again only recognised your arrival with hindsight. A disapproving little voice whispering in my ear at my 60th birthday party, at the very moment I told those closest to me that I had finally got my mojo back, saying: have you? Have you really??

This makes me question myself. Was I pretending, all those months after I thought you’d left? Faking it till I baked it, as the saying goes? I don’t think so. Because faking is almost impossible with you around. My razzle-dazzle, such that it is, fades in your presence. My smile becomes less convincing when it is painted on. Plus, and this has been a very important lesson, pretending not only hurts me. It does damage to others.

This month, you appear a few times, in the small hours, when I should be turning over from the first refreshing sleep of the night and falling quickly back into the next slumber. Instead I become alert and watchful. At these times, you make me go over past failings, magnifying them out of all proportion. In the mornings, there you are again, a dank blanket, ready to spoil the day. Not every day, but enough of them to make me worried that soon, you might not be leaving.

Most wicked one, you mess with my head. You have ways of making me feel responsible for everything that has ever gone wrong that I have had remotely anything to do with, and for not doing enough to solve the ills of the world. You force to me go over and over stuff that makes me feel bad or sad, and guilty for my luck at any of the good things that have come my way. You tell me I am undeserving, selfish, lazy, intellectually weak, self-indulgent, tedious and evil.

And I believe you, to some extent, but not quite so much as before. Because I have learned about your psychological tricks. In a straight fight, I know you will always win. I need to listen to you, because occasionally you are right. After all, you are merely an extension of my conscience, aren’t you? I just mustn’t try too hard to placate you, or listen so much that I stop hearing others who speak more kindly to me.

As I’ve grown older, I’ve tried to take myself less seriously. To be less certain and to listen with greater care. And I’ve learned that to be kind to others, which after all is the whole point of having been put on this earth and being human, I must first be kind to myself. So I’m trying more of that now, mainly in my internal world, but also by sharing how I am feeling with those close to me and some of my newfound friends.

I’m not going to try to banish you from my life. I can’t; you are a part of me. But please don’t get big ideas. You are only a part. Despite your mean little voice telling me I don’t deserve professional care, I have again sought it. It is already helping. But in the end it’s up to me, and only me, whether I allow you to become my defining feature. I am determined that you won’t be. To achieve that, I must also never again pretend that you don’t exist at all. That is why I am writing this blog, for all to see. I will face you, and not allow you to win by making me feel ashamed of your occasional visitations. There should be no shame.

Welcome back, my friend. Today the sun is shining, and you are quiet. But I know you are still there, waiting for me in my weaker moments. And I’m ready for you.

I hope.

 

 

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.

 

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.”