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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

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.

 

When I’m 94…(to the tune of When I’m 64 by the Beatles)

When the NHS was created in 1948, 64 was considered elderly. Both my grandfathers died during the 1940s aged 50 from what we now know to have been smoking related illnesses, having served in the WW1 trenches. My maternal grandmother died aged 65. My other grandma managed to last a bit longer; she died in December 1982 aged 79. 3 out of 4 died in their own beds at home.

I was born in 1955, a child of the NHS. I have worked in it since aged 18. The NHS was set up to improve the extremely poor health of the nation after World War 2, with clinics providing advice and free milk, vitamins, orange juice and cod liver oil, as well as weighing and measuring children, hearing and eye tests, free dentistry, and checking for lice, nits, scabies and rickets. A mass free screening and vaccination programme began for common killer diseases such as smallpox, diptheria, tetanus, polio and TB. Going to the clinic with my mother and younger brothers was fascinating and memorable. Providing care free at the point of delivery to people who were sick or injured was a massive bonus for the public, but its wasn’t intended to be the main aim of the new NHS.

Despite these wonderful founding principles, the NHS quickly began to increase its focus on treating sickness. The status of hospital medicine has always been greater than public health or primary care; this continues today. Radical health promotion initiatives such as the Peckham Experiment sadly closed down before they had a chance to prove themselves.

I trained as a health visitor in 1978, having been inspired during my hospital nurse training – in 1975 I went out for the day with the local health visitor. As well as admiring her cream Morris Traveller and adorable spaniel puppy, I will never forget one visit. In a tiny cottage in a village outside Cambridge, we called on an elderly lady. I remembered her in hospital after a massive stroke, lying with her face turned to the wall. Back home, despite needing two sticks and very limited speech, she ushered us into her cosy kitchen, all smiles, and made us tea and biscuits while her cat snoozed on the sunny windowsill.

Community services (those outside hospital that either help people to stay healthy or look after them at home when they are ill or dying) and mental health services have always been the Cinderellas of the NHS. Never more so than in the last few years, when they have experienced unprecedented cuts in order for commissioners to continue to pay for increasingly sophisticated physical hospital interventions.

Today I have a lovely gig: joining 100 or so folk from the NHS and social care system in Kent, Surrey and Sussex, all of whom want to improve care for older people. It is organised by the KSS Academic Health Science Network. Life expectancy in Kent, Surrey and Sussex is the highest in the UK. Were it not for pockets of significant deprivation along the Kent and Sussex coast, and the appalling fact that people with serious mental illness live 20 years less than the population average (25 years less than the KSS average), it would be even higher. It is common for acute hospital wards to be entirely populated by people in their mid 90s and above. The people attending the event know things have to change. Medicalising old age is cruel as well as extremely costly.

It is, fortuitously, Dementia Awareness Week and Dying Matters Awareness Week. I know from the research of my brilliant ex-colleague Professor Sube Banerjee that only 18% of people who have dementia only have dementia. The majority have between 2 and 7 other significant health conditions that seriously affect their lives. The way we run the NHS is simply not serving their needs, despite very elderly people being its majority users. I also know from the wonderful work of organisations such Dying Matters that these days, most people die in hospital despite very much preferring to be cared for at home.

Today, we will be encouraging the people at the event to face this enormous challenge together. We have to do things differently. It says so in the Five Year Forward View. The attendees at this event are to some extent, like those involved in the vanguard sites across the country, the converted. But even they will have to throw away beloved ideas and think the unthinkable.

I am indebted to @HannahTizard on Twitter for this lovely infographic about tall poppies.
image

Tall poppies may experience meanness from others because they are full of ideas and are not afraid to challenge the status quo. They are always thinking about how to do things better and are not prepared to accept mediocrity, especially when it harms others.

I will be using this lovely infographic today to encourage the people at the event, who I think of already as tall poppies, and giving them a link to this blog so they have a reference to keep.

I hope you find it helpful too. Please be a tall poppy; challenge the status quo if you think the care you provide or commission isn’t what you think you would want yourself when you are 94 or even older.  And do something right now to start making things better for every elderly person who wants fewer tubes up their bottom and down their throat, and more time to enjoy their latter days with somebody kind to sit with them, help them to have a drink and hold their hand.

Meanwhile, as I intend to live until at least 94, I’m off to read Sod 70! by the indomitable Dr Muir Gray, to help me continue to treat my body hard but well, and How to Age by Anne Karpf, from the School of Life series, to help me manage my (sometimes fragile) psyche and approach old age with equanimity and joy.

Do please join me.

Post script: 11 hours after posting this, I’ve already had lots of feedback. One person feels I’m generalising and that the research quoted doesn’t support my view that older people would prefer to avoid unnecessary investigations. I agree that we must ask people and really listen carefully to their answer before subjecting them to invasive tests. Over 100 seem to like it so far.

I’ve also realised that I’ve been channelling the #HulloOurAimIs campaign from NHS Change Day led by my lovely Twitter and real life chum Alex Silverstein @AlexYLDiabetes. So I wanted to mention it. Alex is the tallest of poppies and despite being less than half my age, has taught me loads. Go Alex and thank you xxx

 

 

Are you feeling sad about the election?

The exit polls turned out to be right. And whilst Conservative and Scottish Nationalist supporters are ebullient, I’ve lost count of the number of people who have remarked on social media that they feel really depressed.

For the majority saying this, the feeling they are experiencing isn’t depression in any clinical sense. It is disappointment, sadness and loss. It is a normal grief reaction to something shocking and unexpected, which dashes hopes for the future. And it re-introduces and even expands fears that people who were hoping for a better result for Labour, the Lib Dems, the Greens and even UKIP had overcome, albeit just for a short while.

The five stages of grief model described by Dr Elizabeth Kubler-Ross was not intended to be prescriptive. It was an extremely well-received description of how people who are terminally ill get used to the idea of their own impending death. The stages of grief described are Shock, Denial, Bargaining, Anger, and Depression, better described perhaps as deep sadness. This, in time, leads to Accommodation/Acceptance. Depending on the nature of one’s loss, grief has to run its course. It is possible to get stuck at any stage, and for stages to have to be repeated. Trying to avoid the anger or sadness phases by keeping busy and pretending to be OK can be psychologically damaging; I have form on this myself.

There will be people today who will undoubtedly be at the start of a significant grief cycle, including the 3 party leaders who have resigned, those who have lost their livelihoods, and those closest to them. For the majority of the population, though, the cycle will pass quite quickly.

Some people are already into the angry phase; this is can be when blame gets sprayed about and bad decisions made. It is a time when we are advised not to make big decisions.

It is also important not to get stuck at the anger phase. Those who have learned to attribute responsibility for bad things that happen to them to others can waste huge amounts of energy re-traumatising themselves and failing to realise their own power to effect positive change.

Some people who experience mental illness get annoyed about the misuse of the term depression to describe feelings they see as relatively trivial compared to the self-hatred and hopelessness of clinical depression. I used to be one of them, but these days I am less fussed. As long as people understand that one word can have many meanings, I am more than happy to share it.  But I do want everyone to understand that there are no such things as happy-pills. If you aren’t clinically depressed, anti-depressants won’t make things better. Only you can do that, by getting to know yourself, and being kind and compassionate to yourself and to others.

It is tough advice, but as Maya Angelou said:

If you don’t like something, change it. If you can’t change it, change your attitude. 

The brilliant thing about our democratic system, apart of course from actually having one, is that MPs may only be elected by some of their constituents. But they are there to represent all of them. Occasionally they just need reminding.

I’m consoling myself about the the loss of the rainbow coalition I fondly imagined by thinking how to keep mental health on the agenda of the Conservative government, as they promised us during their election campaign. We have to make the business argument that investment in mental health treatment and support saves money in the long run. As well as the compassionate one about saving lives and making those lives worth living.

It is wonderful that there are millions of us who care enough to do the same.

 

 

 

Please take care, Twitter can be cruel

I love Twitter. But it can be a cruel place. Personal attacks and even threats of death are not uncommon. Sue Perkins and Jack Monroe are the latest high profile quitters following unrelated horridness – in Sue’s case, she was attacked for being (wrongly) tipped as Jeremy Clarkson’s replacement on Top Gear. Jack’s was about supporting the Greens on the election. Death threats for this? There are no words.

I’m nowhere near their league, but I’ve had my share of online nastiness, and it continues. It can be overwhelming when you are under an onslaught from many directions. And unless you reply and risk even worse, other more measured folk won’t know what’s happening, because the vile stuff won’t appear in their time line.

I am of the “Whatever we wear and wherever we go, Yes means Yes and No means No” generation. I don’t see why bullies should frighten us away from places that belong to us all. But I’m also concerned for my own wellbeing and that of others.

It is good that Twitter are cracking down on abuse – better late than never. Meanwhile, here are my tips for staying emotionally safe and still getting the best from Twitter.

  1. Be yourself but think really carefully about how much you share. Social media is still a relatively new medium. Some are already regretting earlier openness. I’m thinking particularly of people like me who experience mental illness from time to time. Talking with others who have similar experiences really helps, because with diseases of the mind, unchecked irrational thoughts about ourselves can snowball and be really bad for us. But sharing also makes us vulnerable. Only a handful of people have accused me of psychological weakness, attention seeking or of using my depression as an excuse for past failings. Even fewer have defaced my image, called me vile names, and traduced my appearance, intelligence, morals, motivations and career. I have forgiven but I cannot forget their words. On a bad day, I imagine that others may feel the same way about me. On a really bad day, I may even agree with some of this shit. So please, take care.
  2. Be wary of individual tweeters who follow few people themselves. They may say interesting stuff, but they are unlikely to be interested in an online conversation with you. Maybe you don’t mind just reading their views? It’s a good way to start, especially if you are shy. But most of us are on social media because we want to exchange thoughts, share experiences and ideas.
  3. Don’t just follow those you know you will agree with. It might feel cosy to be in a cocoon of like – minded folk, but it won’t stimulate or enlighten. If it weren’t for Twitter, we wouldn’t know the odious extent of the views of, say, Katie Hopkins on people seeking asylum. What better spur to get the previously disaffected to vote than the thought of people like Hopkins (who always vote, by the way – they know their rights) getting more of a say than us non neo-Nazis? We need to know these things.
  4. Take the plunge and join in conversations when you haven’t got a view or are still making up your mind. Some people think that being open – minded, even undecided, is feeble or wishy-washy. I disagree. Just be sure that when you in one of these discussions,  everyone is treated with politeness, including you. Be prepared to walk away if that doesn’t happen.
  5. Join in with conversations that are happening at the time you are actually on Twitter. Prepare yourself so you don’t feel too hurt if people whose views you admire don’t respond. Just move on and chat to someone else. Don’t assume people are being rude; they might be but that really isn’t your problem. Easier said than done when you desperately want a reply, I know!
  6. Try not to get involved in those angry ding-dongs where an increasing number of @names get added, until in the end there is no space to say anything. If you get copied in, these are best ignored, in my experience.
  7. Don’t be heavy – handed with the Block button. Some people collect blocks like trophies, and will proudly list you as a person who lacks empathy along with others you may prefer not to be associated with. And you won’t know about this if you have blocked them. Save blocking for porn sites, annoying bots and people who are genuinely harassing you. And for the latter, do also report them. Twitter are rightly upping their game in dealing with online harassment. If you are being repeatedly harassed by someone, you may also need to check if they have other profiles. In my experience, these are relatively easy to spot. And do also report them to the police. They definitely do take action when serious threats are made.
  8. My thoughts here are aimed at people like me who are able to tweet as individuals. The freedom we enjoy compared to those in public positions cannot be underestimated. I’ve been in one of those jobs, and written about use of Twitter from that perspective here. It is great if such people can share something personal of themselves, but it is a big ask, given what can happen and the impacts. Which leads me to my final point.
  9. Don’t rush to judgement of others. No-one knows what it’s like to sit where they are sitting, other than they themselves. Be kind, always. Never, ever make remarks like James May did recently about those who made death threats towards Sue Perkins. He only made a bad situation worse. If you can’t be kind, walk politely but firmly away.

I’ve blogged in the past about forgiveness. If you haven’t seen it and are interested, here it is.

I’m still practising by the way.

 

I think we are pretty amazing

I didn’t sleep much last night. I’d agreed to go on the Today programme at 07.40 to give my perspective on this week’s coverage of the terrible plane crash in the Alps, particularly the implications that it was caused by someone with depression.

I only came out about my own experiences of depression a year and a half ago, even though it has come – and gone – since I was 15. I’m not unusual; 75% of mental illnesses start before the age of 18. I’m also not unusual to be shy about sharing. There is still massive stigma. Including self-stigma, in which I am an expert.

Very gradually, things have become easier for the 1:4 people who experience mental illness, through campaigns such as Time to Change. Or so we thought.

I’m not going to repeat how disgracefully the majority of the print and even broadcast media have behaved this week. Others including Matt Haig, my 17 year old Twitter friend Stella and Stephanie Boland have done so much better than me.

And deepest thanks to Paul Farmer, CE of Mind, Sue Baker, Director of Time to Change and Professor Sir Simon Wessely, President of the Royal College of Psychiatrists for being so quick off the mark and setting the record straight. They have done a stunning job.

What I want to say is that, every time I have an opportunity to speak about the stigma that still affects people like me, I feel a little more nervous. It is an increasingly heavy burden of responsibility. For some, the impact of their mental illness means they lack the voice and opportunity to speak for themselves. They have to rely on others. And that means those of us who can must act with great sensitivity and respect. Including towards those who have lost someone to suicide, anorexia or lack of self-care.

Mental illnesses, by definition, mess with your head. They make you believe horrible, negative things about yourself, question your worth and the very point of your existence, and cause you to feel hopeless about the future. In some cases, people lose touch with reality. They hurt themselves, either deliberately or by failing to take due care. It is rare that they hurt other people. Far more rare than people who are NOT mentally ill hurting others.

There are other illnesses that carry stigma, but mental illnesses are in a class of their own. The media coverage this week may have set matters back.

But what gives me hope is that after speaking on the radio, I have heard from hundreds of people I didn’t previously know via social media. Many are like me, timidly but courageously speaking up about their own experiences in order to encourage people who are ashamed of their mental illness to seek help.

Together, we can metaphorically hold hands, step forward together and show that we aren’t murderous monsters. And that, with love, support and most of all our own courage, we can make a creative and compassionate contribution to the world.

Thank you to all my old and new friends. I think we are pretty amazing.