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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 be kinder about obesity

Fat-shaming is a recent phenomenon. People who do it include doctors, NHS managers, politicians, journalists, comedians and ordinary folk like you and me. I write as one who has done it as well as had it done to me.

I always liked the beach

I always liked the beach

Here’s me as a baby. Fully breastfed, I was bigger than my tiny mother almost before I could walk. I take after my father. I am robust. I love my food.

Humans are built for survival. Some are wiry and can run fast for long distances. Others have staying power. In an emergency situation, chunky people like me can cope with cold and hunger because we can survive on our fat stores. We are the polar bears and the Arctic seals of the human race.

Our modern Western world has played havoc with these survival characteristics. As long as you have money, food is plentiful. But the least nutritious, most fattening sorts of food are often the cheapest. And the combination of sugar, fat and salt in many processed foods such as cakes, biscuits, chocolate, ice-cream, crisps, milkshakes and even bread is, apparently, addictive.

This Ted Talk is enlightening. It helped me understand why losing weight is so hard. When you have gained weight, your body quickly adapts to being bigger, and adjusts your metabolism accordingly. Resetting the metabolic rate is extremely difficult. Once you have lost weight, you will probably have to eat fewer calories for the rest of your life to maintain your reduced size, even with regular, vigorous exercise. So you are fighting not only an addiction, but also your own nature.

And there is another factor. Many modern medications, particularly those used to treat various sorts of mental illness, have the unfortunate side effect of increasing one’s appetite. People taking them find they feel hungry all the time, and not surprisingly they eat more. I finished my antidepressants six months ago. Yet I have at least half a stone to shift, and despite extensive motivation and knowledge, it is proving a struggle. I know from chatting to others how distressing it is to gain four or five stone very quickly, with all the disability and stigma that goes with being overweight to add to the burden of the mental illness for which you have to keep taking the medication that leads to the weight gain.

I know people who have been to the doctor and been encouraged to lose weight. And then they go to the shop next door to buy a newspaper and are told that if they also buy a cheap monster size bar of chocolate (which contains more calories than they need to eat in a whole day but no protein, vitamins or roughage) the newspaper will be free. If this were cigarettes or drugs, we would be horrified.

Given the cost to the NHS of obesity, with its links to heart disease, strokes, Type 2 diabetes, cancer, arthritis and other long-term disabling conditions, not to mention depression, anxiety and agoraphobia associated with body image and self worth, you would think that investing in prevention and effective treatments for obesity would be the place to start.

I don’t like the term obesity epidemic. Obesity isn’t catching. Nonetheless, 60% of us in the UK are now either overweight or clinically obese.

There is mention of this in the NHS Five Year Forward View. But until this week, there has been no systematic appraisal of the best ways to help people achieve and maintain a healthy weight, nor a coordinated, evidence-based commissioning approach to weight-loss and healthy weight maintenance services. Public Health England have produced a report about sugar, but we have just learned that it has been withheld.

Who knows what the real story behind this is? I don’t really care. I just know that leaving obesity to individuals to tackle is unfair, ineffective and helps no-one but those who sell us all that stuff we don’t need.

Our current attitude to obesity is bizarre. Let’s tackle the food giants who push processed junk food at us from every direction. Let’s publish the public health report into sugar and do the economic appraisal that will prove beyond all doubt that helping people rather than criticising and lecturing them would in the end save a lot of money and even more unhappiness.

And most of all, let’s stop blaming people for doing what comes naturally.

This is an update on a blog I wrote earlier this year. I’m reprising it because of the fuss this week about Public Health England’s report into obesity and the Prime Minister’s apparent refusal to consider a possible tax on sugar.

 

Here’s to kindness

My friend Sara said yesterday that I seem to mention kindness a lot in my blogs. She’s right. I’ll explain what kindness means to me.

  1. Kindness is a gift we can each share with other humans, however rich or poor we are. It is remarkable that those with the least material wealth, such as people I know in Pakistan, are often the most generous to strangers as well as family and friends.
  2. Kindness means listening to another person as they seek meaning, understanding and eventually accommodation in bad things that have happened to them.
  3. I used to think kindness was about other people. Recently, I’ve learned that to be truly kind to others, one has to start by being kind to oneself. This is harder than it sounds. And it takes a lot of practice.
  4. Kindness includes going to an event, a leaving do, even a funeral, not because you necessarily want to, but because it would mean a great deal to someone else to have you there.
  5. Kindness is about reaching out to someone who is lonely, low or appears to be in need of help, and not minding if you are rebuffed.
  6. Kindness helps you to offer genuine congratulations to someone who has worked hard to achieve something admirable, even if you aren’t feeling great yourself. You may notice that their positive reaction will make you feel warmer and more contented.
  7. We saw great kindness in Sussex on Saturday, as thousands came to pay their respects to the 11 who died in the Shoreham air crash. By laying flowers on the footbridge, observing a minute’s silence, lighting a little candle or wearing a black armband, people showed love to the bereaved and to one another. Their kindness has made a terrible time feel slightly less terrible.
  8. I’d like to think that in the UK, we might extend our kindness to the desperate people currently queuing at Calais, being smuggled in containers or risking their lives in tiny boats to cross the Mediterranean. The so-called “migrant” crisis is actually a humanitarian crisis. The people fleeing torture, war and starvation from troubled parts of the world are not “benefit – cheats”. They come from all walks of life. They are doing what any of us would do in similar circumstances. And Great Britain is not really “full-up.” Compared with them, we have great riches, including plenty of room and resources. And if helping makes things a little bit less comfortable for some of us for a while, then so what? If we were in a lifeboat, would we prevent another person from climbing in, just because we liked our own space, and leave them to drown? I hope we wouldn’t.
  9. In Buddhism, kindness is named explicitly. But as a matter of fact, kindness is the fundamental feature of all world religions, including humanism. The parable of the Good Samaritan in the Bible, after which Samaritans are named, is about kindness. People who volunteer to help others enrich our world with their kindness.
  10. There are many people who write about kindness. The blog I’d most recommend is by @johnwalsh88. Here is a link to his latest. And here is the philosophy of the author.

In the 35 years that Sara and I have been friends, she has led by example and taught me a great deal about kindness. Everyone who knows her will understand what I mean. I will be forever grateful to her for this.

This will be my last blog for a while.  I’ve a book to finish and blogging, while good practice, is too easy a distraction.

I’ll be back. Meanwhile, let’s put pressure on our government. Let’s no longer feel ashamed of images of drowned people on the shores of seas close to our green and pleasant land.

Here’s to kindness. In the end, it is all that we have to give.

 

Nobody said it was easy…

My last blog was about the launch of the Time to Change project, working alongside two volunteer mental health trusts to tackle the stigma within mental health services. It got lots of positive comments. And a few negative ones.

In the interests of improvement, I thought I’d share the latter, see what I can learn from them and also offer my response.

The comments fall into three broad categories.

1.People who do bad things need calling out. That is the essence of accountability. This project ducks the issue.

I understand what you mean. And I agree. If someone has done something wrong, they should account for their actions. That is what any fair and just system is based on.

But…We are talking about attitudes. And it isn’t possible to change these by telling people they are wrong. And shaming or even punishing them. It doesn’t work. It can actually entrench those attitudes.

The Truth and Reconciliation Commission in South Africa recognised this. It sought to use compassion and forgiveness to build bridges between groups who had done terrible things to each other. Archbishop Tutu used the learning from this work to build his worldwide Tutu Foundation, which teaches mediation to troubled nations and groups. Underpinning it all is his belief that people are made for goodness.

Time to Change has worked on this basis since 2007. They use facts and compassion to help change attitudes. They have had significant, measurable success. This project is no different. Facing up to what is wrong is not ducking the issue. It is honest and truthful and has taken huge courage. Changing things requires sensitivity and compassion. And that’s how we will be working.

2.Teaching staff about mindfulness and compassion is bollocks. It doesn’t work. There is a “happiness industry” out there ripping public services off and laughing all the way to the bank.

I use mindfulness myself, and am proud that my ex-colleagues at Sussex Partnership have been offering mindfulness-based CBT and mindfulness meditation to patients and staff on an increasing basis for the past 5 years. It does work. There is a large evidence base.

But I agree it is not a panacea. Nor does it work for everyone. Mindfulness doesn’t fix poverty, a housing problem or unkind treatment from someone else. What it does is enable you to control your emotional response to such challenges and not allow them to define you.

Our project will use a range of methods to help staff bring their whole, most compassionate selves to work. It won’t duck from identifying the cultural, organisational and external factors which affect the delivery of compassionate care. And this won’t be easy. But we are determined not to paper over problems.

3.Someone like you (me) who has had an occasional bout of depression has no idea about the stigma of serious mental illness. Thinking you are helping by disclosing your own experiences is self indulgent shit.

You have touched one of my rawest nerves. I shared your view for many years, which was why I kept my depression to myself. Added to that, I truly didn’t believe what I experienced from time to time was depression. I thought of it more as my own moral weakness and laziness. Words like self-indulgent were designed to perfectly describe me.

But now I’ve had some really effective therapy. I’ve learned that I’m not a bad person. And that my response to distress and dissonance is to turn in on myself with self-hatred that is greater than anyone else can ever feel towards me. I become my own worst enemy. This is a major aspect of my depression.

It is true that I don’t have the longterm effects of an illness such as schizophrenia to contend with. But just because I’ve managed to muddle through my life and have achieved a few things despite not infrequent bouts of depression doesn’t mean it has been easy. Judging me for not being more disabled is pretty sick, when you think about it.

So I’m going to continue being open about what I do to try and stay well, which I am at the moment, and about what it’s like when I’m not. And I’m going to listen to the thousands of people who have told me that coming out has helped them be more open. Rather than the handful who judge me as self-serving.

At least, that’s what I will try to do.

I’m looking forward to sharing these thoughts with members of the project working group and to hearing their own experiences and challenges. I’ll keep you posted on how we are doing.

And my final thoughts? Nobody said this project was going to be easy. But nothing worthwhile ever is.

Lisa’s ten mental health rules

Rules are made to be broken. And anyway, these days we have far too many of them. Those who work in public services have little hope of remembering them all.

Despite all that, I wrote this list in tribute to the wonderful work of @nurse_w_glasses. And Moses. It applies as much to regulators, commissioners, leaders in NHS trusts, local authorities, private providers and charities as it does to frontline staff.

And all humans.

  1. Thou shalt always remember that the mind and the body are intrinsically linked. There is no health without mental health. And mental health is everyone’s business.
  2. Thou shalt always present a positive image of people who need help with their mental health. It is nothing to be ashamed of.
  3. Do not take the name of people who experience mental illness in vain. Never use terms such as nutter or psycho, even in jest. We may pretend we get the joke, but inside we weep.
  4. As with religious practice, working in mental health requires humility. Do not be dogmatic or rush to judgement of others. Instead, practise acceptance and loving kindness.
  5. Honour the people who choose to work in mental health, whatever career you personally have selected. They have not chosen the easy road.
  6. Killing other people is illegal. Killing oneself is not, but it carries huge stigma and casts a terrible shadow over those left behind. Learn how to help prevent suicide. And never condemn those who might consider it. They need your understanding if they are to seek help.
  7. Mentally ill people can be trusting and vulnerable. They may lack inhibition. Never abuse a position of power physically, sexually, financially or psychologically.
  8. Never treat people who experience mental illness with anything other than compassion and patience. If they make you feel angry or mean, get some help yourself.
  9. Try to tell the truth about mental illness and the current state of services. This is neither easy nor straightforward. They need serious attention and investment in the UK. There are no quick fixes. But relatively little will go a long, long way.
  10. Be hopeful about mental illness. Those who experience it from time to time can lead full and rewarding lives, with just a bit of love and support.  Like me.

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