thanks

Sussex will never be the same. But we stand together

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

 

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

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.
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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