friendship

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.”

 

Why do you blog?

I’ve been collecting questions and comments about blogging recently. Here are some of them, with my thoughts. I’d love to hear yours.

1. Why do you blog?

This is a bit like asking why do you breathe. Because I have to. I’ve always used writing to explore ideas and work out what I think. And I’ve always shared it. Blogging is just the latest way to do this. There will no doubt be others.

2. I don’t know how you find the time

Writing a blog doesn’t take as long as you might think. Also, I no longer have a full time job – although I found it helpful to write a weekly blog even when I did. Nowadays, there are other things I don’t do as much of as perhaps I should. Such as finishing the book I am writing…

3. There are so many blogs. I don’t have time to read most of them

No one expects you to. There are also many millions of books, articles and other forms of writing. Some of us have voracious appetites for reading. Others are more choosy. Both are OK, as long as you don’t only read things you know in advance you will agree with. Reading is meant to broaden the mind. And make you think.

4. How do you know if people read your stuff?

This is why blogging is so great. Back in the day of articles appearing in print only, you might know how many people had bought the newspaper or journal. But you’d no way of knowing who had read your piece. With online blogs and articles, at least we now know exactly how many have opened it, even how long they have lingered there. Although whether they actually read it remains their private business!

5. What if no-one reads your blog?

That’s OK. I have had blogs that were looked at by 1,000 people within a few hours, and others which struggled to reach 200 people over a whole week. It can be hard to work out which will be which in advance. It helps to consider whether the title is appealing, and also whether I am saying something original or even interesting; sometimes only clear with hindsight! The ones that seem most popular tend to be when I write about something that other people might have wanted to say, but were too scared to. Or where I talk about my personal experiences of difficult stuff, and what I have learned.

6. I’d like to write an opinion piece but I’d hate to get some of the horrible feedback I’ve seen you getting

This is interesting. At first, the online mauling of people like me who express their views can be distressing. There is something about the ability to be anonymous or apparently unaccountable that makes some people behave in destructive, even vicious ways. I heard Stephen Fry on Desert Island Discs say that he now tweets but never reads the tweets of others.  That is really sad. I’m similar to him in two respects: I experience depression from time to time. At those times, there is nothing anyone can say about me that is bad as how I view myself. And when I am well, I have in the past found it almost unbearable when people have criticised me. But…If you ignore negative feedback, you miss learning something.  I’m slowly improving at rolling with the punches, and just tuning out the most obviously horrible responses. Increasingly I see myself as an incomplete project that I need as much help with as possible. This makes everything about being alive so much easier.

Also, my wise friend @AlexYLDiabetes tells me that the 80:20 rule should apply, i.e. at least 20% of people should actively object to what you are saying. If they don’t,  you are being bland or populist. Thanks Alex,  as you know that has been a stunningly helpful insight. Particularly as my next blog after this one might be quite contentious…

7. I’ve been told I should blog but I’m anxious about getting started.

No-one should tell you what you should do. It is your decision. But given that you might want to try blogging, I will just say this. All new things are scary. I have had palpitations just before pressing the Publish button on quite a few occasions. This was one and this was another. It is when you stick your head above the parapet and say what people might not be expecting that you will get the most reaction. I like it when I manage to articulate what others have been thinking but haven’t got round to saying yet. And I like it even more if I can help people to formulate their ideas. If you think you might like these things too, please do have a go.

8. How does blogging make you feel?

Mainly happy. I honestly love it. As I do discussing ideas face-to-face, reading and hearing what others have to say, finding my thoughts shifting, and finding ways to explain what I think through the powers of story-telling.

And I love online conversations, especially on Twitter, which is made for ideas. As well as pictures of cats.

William in the garden

William in the garden

Please don’t walk by on the other side

Suicide is one of the last taboos. So much so, that some internet service providers (ISPs) block websites that name it, for fear they are pro-suicide or that just mentioning the word may somehow encourage it. Even my little blogsite has been affected. Thanks to those who told me about two ISPs who were blocking me, and to BT who fixed it fast. And thumbs up to Virgin Media whose initial excuses were unimpressive, but who sorted it out eventually.

I was thinking of the taboo of suicide when I met some wonderful people in Devon recently. Some had been directly affected by suicide, such as the couple who lost their 18 year old son in 2011 and now campaign to raise awareness, and promote a young people’s helpline and two excellent training courses, Safe Talk and ASIST via suicide prevention charity Papyrus. Some were like me and experience suicidal thoughts from time to time. And some were just good, kind people who help others in their chosen careers or as volunteers. They are all part of the South West Suicide Prevention Collaborative.

I shared some of my personal story with them and why I believe now more than ever that preventing suicide is everyone’s business. It is definitely not just the responsibility of staff who work in mental services, who can get blamed for not keeping someone alive, rather than praised for all the times that they have. Staff need support at such times because they feel devastated at the loss of a patient who they care about deeply. How can we expect them to be compassionate to others if we treat them with so little compassion?

Actually, this applies to all of us. Telling people who work in public services to be more compassionate while treating them without dignity, respect or kindness is the ultimate irony. And yet it is played out in many places every day. Including much of the media.

I said something at the event that isn’t currently fashionable. I don’t think it is is possible to prevent every death by suicide. But I do think that we can do very much more IF we make suicide prevention the business of families, friends, neighbours, schools, workplaces, all public services rather than just the obvious ones, the media, shops, cafes, bars, the voluntary sector, faith groups, social groups, sports clubs…everyone. And if we talk about it with more understanding and less rush to judgement, I believe we will gradually lose the taboo. But we still have far to go.

It isn’t just those of us who experience mental illness who think about killing ourselves. Death of a loved one, job loss, other sorts of loss, crippling debt, loneliness, isolation or an overwhelming sense of hopelessness about the future can all be causes. One of the people at the Devon conference spoke bravely about the corrosive impact of the downturn and benefit changes on those who are least well-off.

Only those who have been directly touched by suicide can possibly know just how raw and awful it feels. It is a grief like no other, because of the guilt and the shame that is still associated with it. I don’t get cross about those who still describe the act as “committing” suicide. They usually mean no harm. Suicide hasn’t been a crime since 1961, but we have some way to go to incorporate that change into our values, attitudes, behaviours and language.

I have spent a lot of my life being ashamed of having occasional suicidal thoughts. I was lucky to learn about Samaritans via an article in Reader’s Digest when I was 15, the same year I saw my first psychiatrist. Their kind, wise volunteers have helped me several times in the past. I even became one myself for a while in my early 20s. But I was going through a rough patch and left without explaining why.

Now it’s payback time. I’m doing a big bike ride to raise money for Samaritans. Apart from a handful of staff at their HQ, all Samaritans are volunteers. Like the two lovely women who spoke at the Devon event about the work they are doing in local schools to raise awareness and offer support in the event of a death by suicide. I am donating my £500 fee from the event this week towards my fundraising target. Every penny I raise will go to keep local branches across the country running and to pay for the calls desperate people need to make. I have a big birthday in August. I’m asking my family and friends to make donations in lieu of presents. I can’t think of a better way to celebrate reaching 60.

We can all help one another. That man sitting on the station platform all alone? How long has he been there? Could you get over your reluctance to appear interfering and take a moment to ask him how he is? What about the elderly neighbour whose partner has recently died and who hasn’t been seen for a while? The young person at work who takes frequent days off? The friend who has been made redundant? Even the chief executive who has apparently made a mistake and is getting a mauling via social media. We can all do our bit to be kind, because that is all it might take to save a life.

And as we say at Grassroots, the wonderful suicide prevention charity in Sussex of which I am a trustee, here’s to life.

It could be you

I’ve had a mixed week. Yesterday I was in Leeds with people who mainly work in the local NHS, voluntary sector and local authorities and share an interest in helping vulnerable people. The conference was called #puttingPeoplefirst. It was enlightening and uplifting. I observed a groundswell of support for a different way of being at work, where people bring their whole and unique selves to bear on issues that matter, where failure is seen as an opportunity for learning rather than a weakness to be vilified,  and where treating patients/clients/service users with deep and real compassion is underpinned by working with love and compassion with one another.

Sounds a bit wooly and Buddhist for you? Then listen up. There is an increasing body of evidence that staff, from cleaners to chief executives, who are encouraged to operate with integrity and openness provide better, safer, kinder care. And this stuff isn’t new. Thank you @jackielynton for reminding us of our old friend Donabedian, who wrote wisely about improving quality before anyone else had thought of it, and said that it started with love.

If you don’t already follow @johnwalsh88 on Twitter or read his Yes To Life blog, and you like the sound of the conference, I’d encourage you to do so. I cannot thank John enough for inviting me. Or to the other organisers and speakers and to everyone there who was so honest and kind, including when they challenged one another.

Meanwhile, in another part of the forest,  a senior public servant has selflessly stepped down from a job they openly loved despite having done absolutely nothing whatsoever wrong, and indeed a considerable amount right, in order to meet the political ends of people who appear simply to be throwing their weight about. And is being vilified online for it. What does that say to the thousands this person leads? Are they at similar expedient risk?

And in yet another part of the forest (I do like that saying, please tell me if I overuse it) senior people who should know better have been talking about “Never Events” as if by giving something a threatening – sounding name, it will stop it from happening. Actually, what it does is make staff very, very scared. And scared people are less creative and more likely to cover bad things up and to go off sick with stress. Or worse, come to work when they aren’t psychologically fit enough to care for themselves, never mind others.

Here’s a precis of what I said at the conference about authentic leadership:

  1. Bad things happen. Good leaders look after their people at such times. We live in a blame culture so this is very, very hard.
  2. The more rules and procedures you impose, the less creative and compassionate your people will become. Resisting the external demands to introduce even more is also very hard.
  3. We performance manage and inspect individual organisations at the expense of the good of the collective system, and the patients who struggle across the bits of the system. Moving to a more collective approach is a goal we could all agree on. But what about accountability, comes the cry. Or, who would we blame when things go wrong?
  4. There is a leader in all of us, whether we are a patient or family member, work on reception or sit at the board room table. Work hard, if needs be against the grain, to be defined by what you do best, not by what scares you most.
  5. Bring all of you to what you do. It took me far too long to learn that being all of me, including the bits I was less proud of, even ashamed of, made me a more authentic leader. Don’t try to hide your imperfections like I did. It’s an added burden when things are hard enough already.
  6. Many people are privately saying that everything now isn’t right, and some things intended to improve care are actually conspiring to make it less compassionate and safe. If you agree, find the courage to speak truth to power, which is what I am trying to do in this blog.

If you are in a leadership role and you see a colleague who is having a tough time, please don’t metaphorically cross to the other side of the road as though they had some toxic disease you might catch. And please don’t believe the shit you read online or even join in the anonymous bear – baiting that passes for acceptable comment these days. Instead, offer them your genuine support.

Because you never know, one day, it could be you.

 

What goes on at conference doesn’t stay at conference

This week, NHS folk (patients, policy makers, clinicians, managers) gather in Liverpool for the NHS Confederation Conference. I’ve been to quite a few in my time. Here are my tips for getting the most from this annual NHS jamboree.

  1. Treat the event like a great art gallery or music festival. Don’t try to see and do everything. Be choosy, and give the things you choose your undivided attention.
  2. Travel with an open mind. Be prepared to learn new things and to unlearn old ones. If you only seek out sessions or speakers that you think will confirm your views, you will waste your time and the money of whoever has paid for you to go.
  3. Some people need no encouragement to network. But if you aren’t confident about bounding up to Simon Stevens or Jeremy Hunt with an outstretched paw, don’t worry. Practice by saying hullo to people who look like you feel – perhaps a bit lost or lonely. And remember what Dale Carnegie said: You can make more friends in two months by becoming interested in other people than you can in two years trying to get other people interested in you.
  4. When meeting new people, try to be neither boastful, facetious or enigmatic. If they ask you what you do, tell them. Self deprecation is good, but only if you mean it.
  5. Dress for comfort AND style. These are not mutually exclusive. And ladies, remember that hobbling about in heels that may be causing you permanent disability is not a good look.
  6. Don’t be a killjoy. If you get invited, go to the conference dinner. This is where you will get to mingle with very senior people once the pudding has been served. I’m expecting some serious selfie action from NHS management trainee chums.
  7. Burn the midnight oil if you must. But never forget you are at work. Even if someone makes you an offer you feel you cannot refuse, say No. What goes on at conference does NOT stay at conference.
  8. Take breaks. Go for a walk. Have a rest in your room. Do shopping or emails or visit Tate Liverpool or watch triathletes training in the dock. Drink coffee. But stay focussed on why you are there. The NHS is in desperate need of radical change. We are relying on people like you to work out the two or three things that will make the most difference, and then to deliver them. So you need to be in good shape.
  9. Be kind. You may see folk who you know are having a hard time. Please don’t avoid them. Some of us older hands worry that, despite all the talk about compassion, the NHS has become less compassionate, with considerable focus on inspection, compliance and performance but insufficient attention to recovery, development and improvement. And we have jettisoned most of the architecture that helped senior people to step aside with dignity when circumstances required this. The best you can do is say hullo to people working in very tough places, and listen if they seem angry or frightened. You never know, one day, this could be you.
  10. Bring back stories. I remember one year Roy Lilley started his session with the sound of an unanswered phone ringing while he did a voiceover about being a worried relative. He went on to demonstrate an inadequate vacuum cleaner, dropped it off the front of the stage, introduced us to a new bagless vacuum cleaner, and brought on then little-known James Dyson to chat about quality. He ended with a duet with his brother on keyboards. It was fabulous. This year I highly recommend Alison Cameron at 9.30 on Friday morning. I will be watching online as she reminds confetence why we all do what we do.

You can prepare by following some great NHS people on Twitter. I’ve already mentioned @allyc375. Here’s a few more: @WhoseShoes, @NHSConfed_RobW, @NHSE_Danny, @ChrisCEOHopson, @Saffron_Policy, @HPIAndyCowper, @Crouchendtiger7, @HSJEditor, @SamanthaJNHS, @antonytiernan, @anna_babic, @DrBruceKeogh, @JaneMCummings, @helenbevan, @jackielynton, @DrUmeshPrabhu, @JamesTitcombe, @NHS_Dean, @KarenLynas2012, @yvonnecoghill1, @2020Health, @Damian_Roland, @BCHBoss, @nickyruneckles, @paulfarmermind, @KMiddletonCSP. Of course there are many more wonderful NHS folk on Twitter, but the ones on this list are definitely at the conference this year. Please seek them out and say hi, and send best wishes from me. And expect a warm welcome back.

I recommend that you follow the conference chair @tweeter_anita. I hope she will mention her stunning new book Sophia, the biography of a forgotten Indian Princess who became a suffragette. It has reminded me that keeping quiet and toeing the line never got anything important done. And causes me to wonder how it can be that in 2015, with NHS staff being 70% women and 20% BME, Anita was left to interview 6 white men who are, collectively, in charge of NHS commissioning, public health, regulation and training. I’m not criticising the incumbents, just the system that perpetuates this shocking lack of diversity at the top. All the more reason to dig deep and support the statue Mary Seacole, which will commemorate not only Mary, but all women and BME people who have dedicated their lives to caring for the sick and wounded.

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Please support the Mary Seacole statue appeal http://wp.me/P4ZnZz-3Y

So listen hard, make some noise, have fun and be kind. I hope you have a wonderful conference.

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With thanks to @MarkAxcell for the lovely poster.

 

You’ve got a friend

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Dear Friend

I saw the above from Stephen Fry a few days ago and loved it. It made me think how much I have to thank you for.

  1. Thank you for standing by me when I did things that later I came bitterly to regret. You never said  “I told you so” but you were there to help me pick up the pieces.
  2. Thank you for recognising that we are different, and for not sitting in judgement of me or the paths I choose to take.
  3. Thank you for keeping in touch during times when I “go quiet” and for not seeing my lack of effort as a personal slight or a sign that I am a rubbish friend. Even though I am.
  4. Thank you for listening to me, for only giving advice when I ask for it, and for not minding when I inevitably fail to take it.
  5. Thank you for being worried about me when I have done things to hurt myself, and for reminding me, despite how I sometimes feel, that I am worth caring about.
  6. Thank you for being there to celebrate my successes and for knowing the personal cost of these achievements.
  7. Thank you for the times when I couldn’t speak and you held my hand and told me you would always be there.
  8. Thank you for once sending me a postcard I will always keep which says “Blessed are the cracked, for they let in the light.”
  9. Thank you for understanding my need to be liked and needed, even though you are much more sanguine and self-contained. And thank you for letting me help you sometimes; I am so glad that I can.
  10. Thank you for never asking me why I get depression. Sometimes you know better than I do about why. And sometimes it just happens.

My life is a bit of a roller coaster. It has taken me nearly 60 years to learn that, no matter how much I try, I can’t completely change that, although I am at last learning to recognise my triggers and be kinder to myself and thus to others. You help to make the ups less scary and the downs a tiny bit less grim.

With my love and thanks to you for choosing to become and to stay my funny, kind, wise and very dear friend.

From me xxx