thank you

Watching my privilege

Trustees of the Mary Seacole Trust (from left) Jean Gray, Lisa Rodrigues (vice chair), Karen Bonner, Dawn Hill (President), Trevor Sterling (chair), Roxanne St. Clair (treasurer), Jermaine Sterling, Ros Trennick, Steve Marsh (secretary), Raf Alam.

In 1973, aged 18, I joined the NHS. My first job was at a learning disability hospital. It was a backwater for patients. And also for staff, 50% of whom were Black, Asian or other ethnic minority (BAME) backgrounds. Since its inception, the NHS has recruited internationally in order to meet staff shortages in less popular parts of the service. That hospital relied on nurses from Ghana, Nigeria, the Philippines, Mauritius,  Sri Lanka and the West Indies to look after some of the most vulnerable people I have ever met.

Three months later, I left my new BAME friends to start nurse training at the prestigious Hospital for Sick Children, Great Ormond Street (GOS). Here, things were different. Of the 150 student nurses who started in 1973, 150 were female, almost all were middle-class, and every single one was white.

There were of course BAME staff at GOS. They worked in the kitchens and cleaned the wards. They served us in the canteen. There were a handful of black and Asian nursing assistants, and the occasional agency nurse. And there were BAME pupil nurses, doing a shorter, less academic course than ours, who would eventually become State Enrolled Nurses, a second-class role which precluded them from promotion to becoming a staff nurse or sister. I cannot recall a single black ward sister. 

This is not a criticism of my alma mater, by the way. Things were the same across all the London teaching hospitals. 

41 years later, we discovered that not much had changed. In March 2014, the year I retired from the NHS, Roger Kline published his excoriating Snowy White Peaks report. We learned that whilst 70% of the NHS workforce was female, and 20% BAME (30% BAME amongst nurses, and 40% BAME amongst doctors), the top of the NHS was almost totally white and predominantly male. 

This stinks. It is institutional sexism amd racism. I have written about it before, and how Mary Seacole can help us challenge such shocking stigma and discrimination. 

On Thursday 29 June 2017, 1 year minus a day since Mary’s beautiful statue was unveiled outside St Thomas’ Hospital, we launched the Mary Seacole Trust at the Black Cultural Archives in Brixton. Our aim is to use Mary’s legacy – compassion, creativity, dynamism, entrepreneurship and most of all, never giving up – to inspire people of all ages to achieve their best in whatever walk of life they choose. You can read about our first two programmes and a bit more about us on our new website. Plus a lovely 5 minute film made by one of our trustees, Jermaine Sterling. Do take a look – it’s great!

But when I was asked by our chair, Trevor Sterling (who left school at 16, yet is now a renowned lawyer and partner in a prestigious law firm plus one of the funniest, nicest and most effective people I have ever met) if I would be the new charity’s vice chair, I had to think hard. I felt the need to challenge myself about whether such an honour was deserved. I have had my share of difficult experiences, but I have not experienced racism. White people like me have to take care to avoid cultural misappropriation. We have to watch our privilege.

So I talked to my BAME friends, including some of the other trustees. And they said this. They reminded me that we are all part of the human race, brothers and sisters under the skin. And they welcomed my support because making sure everyone achieves their best is not just their fight. It is our fight. 

So I said yes. I promise them and all of you to use my talents, such as they are, plus my experience and connections to help inspire people of all ages to achieve their best, based on merit, passion and hard work. Not what school they went to, who their parents are or the colour of their skin. 

Just like Mary Seacole. Mary had to fight many fights. She never gave up. And nor shall we.

To sign up as a member of the Mary Seacole Trust, or just to learn more about us, click here. 

Thank you. 

 

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Social media meanderings from Saltaire

Image by Dan Bailey

Saltaire

By the time you read this, I will have given what has been billed by my Twitter chum @PGTips42 at Bradford District Care Trust as a Social Media Master Class. 

In fact you would have to look hard to find someone who is less of a social media master than me. If they were paying me, the 60 attendees would by now have asked for their money back. Luckily, I am doing it for free. This gives me a chance to explore some recent thoughts with them and to visit the beautiful model village of Saltaire in West Yorkshire. The legacy of Sir Titus Salt could teach us a thing or two about philanthropic investment in social capital and infrastucture for the good of everyone, not just the richest.

Back to social media. One of the promises I made to myself when I retired from the NHS was that I would accept speaking engagements only when they were about something that really interested me, and that I would never again use Powerpoint. I’ve stuck to this for 2 1/2 years and it has served me pretty well. I did think about breaking the second rule for this session, as some screen grabs from Facebook and Twitter would have been nice, especially if they included kittens. But I decided against it.

Instead, I will have meandered through some personal insights, drawn from this blog and the references herein, and even better, found out what the attendees think.

My personal approach to using social media is how I tend to approach most things – I jump in and have a go, ignore wise advice and instead work out the rules as I go along. This isn’t the wrong way, but nor is it the right way. It’s just my way. But however you choose to get started, putting yourself out there via social media is undoubtedly scary. It is important to take care. I do highly recommend this very well constructed article by Annie Cooper and Alison Inglehearn. It will help you stay safe.

Once you have chosen your preferred social media platform – such as Facebook, Twitter, Instagram etc (and this can feel like a Betamax v VHS choice), here are an updated set of rules I shared in a previous blog that might help a social media novice get started.

  1. Do it yourself.
  2. Listen twice at least twice much as you speak.
  3. Don’t rise to the bait or post when angry or under the influence of dis-inhibitors.
  4. Share opinions but remember they are only your opinions. Others are allowed to disagree!
  5. Where possible, stick to facts and values.
  6. As in face-to-face conversation, seek common ground.
  7. Don’t believe everything you read.
  8. Don’t only talk to people you know you will agree with. Some people describe those who do as living in an echo-chamber.
  9. There ARE trolls out there. But not as many as you might be led to believe.
  10. Be kind, always – to yourself and to others.

It is possible, and great fun, to crowd-source a seminar, as I have now done a few times. Yes, it takes more time than the usual approach. (And it doesn’t finish on the day. It is important to thank people properly who have made the effort to help you.) The benefits are the potential to engage many times more not only with your direct audience but also with others via social media. And to widen your own learning in ways you could not have imagined. Most of what you see here has been achieved with the help of my social media friends. 

Given my passion about mental health, I must mention the impact of social media, which can either be overlooked or understated, in my experience. I thank my friends for reminding that social media is only a very small part of the world. It can be a source of solace and support, as I have sometimes found.  But it can also cut you off, if you let it. And it can be vicious, self-righteous and damaging. People can hide behind anonymity, so bad behaviour is invariably worse, goes more unchecked and can be more intrusive than in face-to-face interactions. I wrote this blog about Twitter  in 2014 which you might find helpful.

Blogging is not compulsory. If you like sharing thoughts in writing, you will probably enjoy blogging and learn to do it well. Like everything worthwhile, it takes practice. And if you don’t, you won’t. 

I would also mention that, however much you like the blog site you have chosen, unless someone (i.e. you and/or your readers) are paying for it, you and they ARE the product. The same applies to all social media platforms and indeed all publications, such as “free” newspapers. If we want original, independent writing to thrive, we MUST pay for books, journals, newspapers, even blog-sites. Otherwise it won’t be long before the only things available are products sponsored from a commercial or otherwise partisan perspective. And that is a very sinister prospect. 

Some people use social media platforms such as Twitter for swift repartee, and blog about more considered and complex thoughts.  I would argue that blogging can help us to work out what we think. And that we can use Twitter and other chat sites for this too. After all, there is no point getting involved in conversations if we have already made up our minds about something. Here is a bit more about why I write a blog.

Just to show that I have been thinking about social media for a while, here is something I wrote for the HSJ in 2012.

This slide deck on the role of social media in health is the extraordinary Dr Helen Bevan, @HelenBevan on Twitter. Helen is a genius in improvement methodology and practice as well as new ways of working, including using social media. 

And I thank another wonderful friend @AnnieCoops for introducing me to this lovely video poem about the social media imprint we leave behind us. Like all good things on social media, it will make you think really hard. Which is the best sort of thinking. 

Here are some of my new friends at Bradford District Care Trust. They were AMAZING!!!

And given that I mentioned kittens, here is William to wish you all well for 2017.

Blessings

books

Books that have inspired me this year by @Suzypuss @jamestitcombe and @molly_speaks

 

 

 

 

 

 

To keep depression at bay, it helps to count one’s blessings. My Twitter friends are a very big blessing. Here are some thank you messages for 2015:

  • To campaigning journalists @andymcnicoll and @shaunlintern for supporting underdogs including mental health care and people with learning disabilities. Please never stop.
  • To Adam and Zoe Bojelian who lost their dear son @Adsthepoet in March 2015 but keep his legacy alive via Twitter. You are in our thoughts as you face a first Christmas without your wise, beautiful boy. We will never forget him and what he taught us.
  • To @JamesTitcombe who lost his baby son and has courageously campaigned for greater openness over mistakes in the NHS, despite some vile online abuse. I treasure my copy of Joshua’s Story. And I thank James for all he continues to do to make the NHS safer for patients and their families.
  • To all who bravely act as patient representatives, such as the indomitable @allyc375, and remind regulators, commissioners, managers and clinicians what the NHS is actually for. Only they know the cost of speaking up. Go Ally, @anyadei @ianmcallaghan @DavidGilbert43 and others who’ve earned the right to call themselves patient leaders.
  • And to @HSJEditor for taking a risk and running the first HSJ list of patient leaders. Thank you Alastair. I think it was a game-changer.
  • To those who’ve grasped one of the most feared conditions and are making life better for those living with it. I mean you, @dementiaboy and @dr_shibley. To you and others like you, thank you for refusing to leave dementia in the too-difficult box.
  • To @Liz_ORiordan who is generously sharing her experiences of breast cancer care, which for a breast surgeon is a pretty massive deal. And for some other stuff.
  • To @EastLondonGroup, who introduced many of us to a group of previously little known landscape artists from the early 20th Century. Sunday Morning, Farringdon Road has become a landmark of my week.
  • And to @penny_thompson, for pointing me to ELG and for always being true to her values.
  • To poet @Molly_speaks for painting pictures with words in her lovely new book Underneath the Roses Where I Remembered Everything
  • To @HPIAndyCowper, for his excoriating, original analysis of the NHS, and for his support to me in my scribblings.
  • To @clare_horton for running the excellent @GuardianHealthCare and even including some of my pieces. This meant so much.
  • To @seacolestatue @EAnionwu @trevorsterl @thebestjoan @pauljebb1 @joan_myers and many others for plugging away in the face of seemingly impossible odds. The Mary Seacole Statue will rise in 2016 as a permanent memorial to someone who showed how, if something matters enough, we should never give up.
  • To @nhschangeday @PollyannaJones @helenbevan dani_ellie @jez_tong @LydiaBenedetta @cjohnson1903 @WhoseShoes @fwmaternitykhft @DaniG4 @damian_roland and so many others for including me in NHS Change Day 2015. I was meant to be helping you but I gained many times more than I gave.
  • To @TimetoChange @suebakerTTC @paulfarmermind @carolinewild @danbeale1 @2gethertrust @NTWNHS @rethink @mindcharity and a whole raft more for being a major part of my life this year, working together to tackle the stigma that still exists within the NHS towards folk who, like me, experience mental illness from time to time but are so much more than our diagnoses. Here’s to you.
  • To @nurse_w_glasses @anniecoops @drkimholt @gourmetpenguin @AlysColeKing @DrUmeshPrabhu who show by words AND actions that compassion is alive and kicking amongst health professionals
  • To wonderful women leaders such as @SamanthaJNHS @BCHBoss @JackieDanielNHS @ClaireCNWL @CharlotteAugst @KMiddletonCSP @Crouchendtiger7 @DrG_NHS @VictoriBleazard @JaneMCummings @CarolineLucas @juliamanning @TriciaHart26 @clarercgp who stick their heads above the parapet and make the world a better place
  • And folk like @NHSConfed_RobW @ChrisCEOHopson @cmo @profchrisham @ProfLAppleby @WesselyS @nhs_dean @NHSE_Paul @ScottDurairaj  @stephen_thornton @jhazan @rogerkline  who prove that leaders on Twitter don’t have to be women to be fabulous
  • To bright, bubbly new leaders like @anna_babic and all those I’ve met via @NHSLeadership, who fill me with hope for the future. And to @Alannobbs @kirsti79 @NoshinaKiani and all the other great folk at the NHS Leadership Academy. You do stunning work.
  • To @GrassrootsSP and everyone who works to prevent the long shadow cast by suicide. Thank you.
  • To everyone who supported me in my bike ride for @samaritans in the summer. Especially @NurseEiri and @JackieSmith_nmc. They know why.
  • To @Suzypuss whose book The Other Side of Silence has inspired me to get on and finish mine.
  • To wise owls @johnwalsh88 @TelfordCC @KathEvans2 @gracenglorydan @timmkeogh @RecoveryLetters @profsarahcowley for being beacons when the world feels a bit too hard
  • To friends who also experience mental illness from time to time and who share their thoughts and feelings so generously. Thank you @BipolarBlogger @Sectioned @BATKAT88 @annedraya @clareallen @corstejo @schizoaffected @rabbitsoup_zola and many, many others. On a not-so-good day, yours are the tweets I look out for. You bring me hope.
  • If I could, I would add everyone else I’ve chatted with on Twitter this year. To everyone I follow and who follows me: Twitter is 97.5% good for my mental health, and that’s because of all of you. Thank you all so much. I wish you all much love for 2016. You rock :mrgreen: :😎💃❤

 

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.

 

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

 

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.

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.”