Thursday, 6 April 2017

The infinite variety of creation

Photo: Butterfly Conservation
Last weekend we had the fun of having our grandchildren and their parents to stay. When one’s surrounded by news of bereavement and illness it’s easy to be overwhelmed by sadness – and to forget that there’s much to enjoy. For example, just this minute a yellow brimstone butterfly has settled on the mini cauldron of deep mauve violas which have been flowering non-stop since some good friends gave them to Jane last autumn. Now it has bounced away over the garden in the spring sunshine, while a wren sings with its surprising piercing trill on our fence. I wonder whether this year it will complete its nest in the eaves of our neighbour’s garage. I think the males build a number of nests – and last year this one wasn’t used.  
Observer's Book of Birds

And yesterday evening we were at my favourite coffee shop, Cornerstone in Grove, with some good friends. We watched a three-minute video clip, which Tim described as the macro and the micro. It’s called Cosmic Eye. It starts with a girl, Louise, lying on a lawn in Google headquarters in California, and pans out fast through the universe and beyond to the limits of our knowledge and then reverses the process into her eye until it reaches the opposite limits of our knowledge to quarks and beyond, before bringing us back to the human being lying on the grass. Some of us understood it better than others. The big unanswered question, according to Tim, is what’s the unifying theory bringing the cosmic and the quantum together. Being a simple non-scientist, I was left with a sense of awe at the extraordinary diversity of existence.

I’m reminded of the most memorable lectures I went to in Cambridge, which were given by Professor Donald MacKinnon, not about my subject, English, but about philosophy. Besides his eccentricity and the gripping intensity of his engagement with the topic, I particularly remember one phrase of his, “the infinite variety of creation” or maybe “of nature”. I remember I thought at the time, “Yes, that’s the excitement of being alive.”

Tuesday, 28 March 2017

Hot air, much wind and cool sense

Oh dear, oh dear! I’ve been looking back at the start of this blog. What a boring old fart I’ve become since then. My posts have increased in length and in grumpiness. I’m surprised anyone reads them any more. I know some people do. Probably my family….

Anyway, here I am today, sitting in my favourite Cornerstone café admiring the new kitchen in the children's corner, that Sarah the manager raised money for, by going without sugar throughout February. The sun is shining and all’s well with the world.

On Saturday we had the local branch MNDA AGM. As usual it was a friendly time. We did the business bit, and after lunch had a talk about the NIHCE Guidelines on MND. Wow, it’s a weighty tome! And I suppose GPs and Health Commissioning groups are meant to have a grip on scores of similar documents…. We also heard about the Happy Valley Festival, a seriously cool one-day music festival in aid of MND on 17th June ( - tickets on sale tomorrow.

I asked one of our local MND experts what I could expect dying to be like. The answer was compassionate and honest: “The hardest part of MND is the living with it, not the dying. As the muscles weaken, the oxygen level drops, carbon dioxide rises. Usually people die in their sleep.” Or words to that effect. Reassuring. Confirmed my view that dying with MND is no more distressing for all involved than any other death.

Monday, 27 March 2017

Care - what's it worth?

Yesterday I happened to hear an interview conducted by Anna Magnusson on BBC Radio 4's Sunday Worship. It gave me an insight to the vocation of nursing:
"One of my nieces is a newly-qualified Staff Nurse. Ellie’s 23, and works in a vast London hospital. She’s in the kind of job which gives her insight and maturity beyond her years. Every day, she looks after strangers. We sat down together one afternoon to talk about caring, and giving back what we receive. And what the story of Jesus washing the disciples’ feet means to her:
It’s the son of God; it is the most holy person saying, 'I don’t care if you’re homeless, I don’t care if you’re the scum of the earth, I am here to serve you.'  It’s just throwing every ideal we have out the window that you have to be the most rich, you have to be clean, you have to be good at your job – as long as you are a person, that’s what makes you valuable, and I am looking past anything other than you being a human – you are a human so I am going to serve you.
As a nurse you do have to do that, you have to say, I don’t care if you’re a drug-dealer, I don’t care if you’re a criminal, I don’t care if you’re a nun – I am going to treat you exactly the same because I have a duty to serve every person that comes through this door.

Tell me a bit about feet, though – what kind of feet do you encounter in your work?
Ooh … They come in all shapes and sizes, all lengths of toenails and smelliness and grottiness.  We’ve got patients who come off the streets, who are homeless.  And sometimes it can be quite horrible! 

But clearly you can’t allow yourself to be squeamish because that’s your job; it involves a lot of putting your hands on people, on giving intimate help?
Yeh, and I think over the years you do, you become a bit more immune to it.
I remember one of my patients, he had come off the street and he had this massive beard which he said he never used to have, and he was quite stinky, so I scrubbed him.  And you could just see the dirt all falling off.  And then goes, ‘Oh, I really want to have a shave!’.  So I chopped off all of his beard with some scissors and then I got the shaver out.  And I shaved his whole beard.  And he just couldn’t thank me enough, it was great.  And it was such a lovely bonding time between us, because I asked him about his life, I was able to find out what he was like when he was younger, and when he left he just couldn’t stop shaking my hand.  Because it’s one small thing that makes such a big difference, and I think everyone would want, I think people would want to do that, to give a tiny bit to someone and for them to receive so much from it...."

She added another insight into the folly of our policy of squeezing more and more out of the resource which we deliberately limit financially. We can't expect the time and level of compassion we'd like, when we understaff the NHS because we underfund. Time is money - and money provides time. 

"One of the main reasons I love nursing, and especially when I was a student – I was able to give more of myself to them because I wasn’t pressured by being a staff nurse; I had that little bit of extra time take the effort to make sure that it’s done in the most lovely way, to say, 'No, don’t rush this, this is someone, this is your grandma, this is your mum, take the time to make this as nice as it can be – even if it’s just 10 minutes, giving someone a little bed-bath in their hospital bed.' And then very quickly you’re getting a picture of their life.  So I never view them really as strangers."

In the same programme Anna Magnusson related,
"I’ve a friend in London who used to work for a home-care service.  
The allocated time for each visit was 15 minutes, and it was never enough.  She couldn’t allow herself to leave someone soiled or half-dressed, so she would over-run. Then she had to rush off to the next person, always behind schedule, always distressed over what she could not do to help. 
She was paid peanuts and, in the end, she couldn’t continue and care for her own family as well.
She trained as a bus driver instead, and was paid a decent wage."  

We know that's true - and yet it seems that as a society we are not willing to pay the price of providing care to those in need at their point of need. And then we, led by the media, have the gall to complain at waiting times or cursory treatment. And politicians find it convenient to collude in the blame game - to deflect our attention away from the fact that they don't have the courage to face themselves and us with the truth that care costs. Care is worth paying for. The NHS is worth paying for. And that means nurses and those in the care professions deserve rewarding.

Monday, 20 March 2017

Let the teachers teach

I’m sorry to report this, but I spent a depressing evening last week in a group discussing religious education. Among those there were two parents, one foundation governor and other interested people, all, I guess, grandparents. I was the only one who confessed to having been a school teacher. 

We listened to a podcast from the “Beyond Belief” series. The impression left by the BBC conversation was, as someone said, “dire”. Poor teaching, non-specialist conscripted teachers, confused aims. Well, that’s not my own experience in secondary schools where I taught and where my children went. Of course, inevitably, in primary schools teachers are in effect non-specialist in all subjects except their own. They are on the whole experts in bringing out the best in children.

However what depressed me most was the wholesale buying into the widely peddled myth about state education. That narrative goes that our state schools and their teachers are generally failing children. The truth is that it is politicians who have long failed schools. In my lifetime I remember only one Secretary of State for Education who was any use, and that was Estelle Morris, who held the post for barely a year. Her great qualifications were 1) that she had taught in a comprehensive, and 2) that she worked to improve schools, not to change the system. Every other Education Secretary from Margaret Thatcher onwards used the state school system to advance their own political career, by leaving their mark on it. One can hope that Justine Greening will prove to be an exception.

Whether it was changing the exam system, raising the school leaving age, introducing more and more testing and school league tables, introducing academies and free schools, changing inspection regimes, fast-track entry, there has scarcely been a minister that has not introduced a new pet scheme, while at the same time effectively talking down the teaching profession. If they refrain from overtly criticising teachers, they fail to respect their expertise and reward their hard work. Hardly ever have I heard a minister defending the long hours of overtime that teachers put in or praising their skill in communicating the excitement of a subject to a class of variously motivated teenagers. More often, as I’ve indicated, Secretaries of State will complicate the teacher’s lot by introducing yet another innovation for her or him to grapple with. And when you examine those politicians’ qualifications, they are usually nothing but having been a school and university student themselves. When they have a bright new idea, they would do well to listen to David Hare’s plea, in a different context, in Racing Demon, “Don’t do it, Charlie – it’s not fair.” Bishop Tom Butler quoted this on Thought for the Day (8thJanuary 1992) in a well-directed plea to politicians to leave teachers alone. “Continuous revolution,” he commented, “is not necessarily a helpful hallmark of an educational system.”  Well, teachers have been living with it for over 25 years now.

When I was learning to teach, there was a great little book called The Craft of the Classroom by London headteacher, Michael Marland. It is full of advice about to structure lessons and inspire pupils. It ends, “"The craft won't work without a spirit compounded of the salesman, the music-hall performer, the parent, the clown, the intellectual, the lover and the organiser, but the spirit won't win through on its own either. Method matters. The more 'organised' you are, the more sympathetic you can be. The better your classroom management, the more help you can be to your pupils." I don’t know whether the book is put in the hands of new Education Secretaries. It ought to be. If they would only allow teachers to develop their craft and hone their skills without constant interference, they would be surprised at the results. 

There are two teaching tips which ministers (and all managers, for that matter) would do well to heed. One is that you need to earn your students respect (and you do that by respecting them). The other is that they respond better to encouragement than to criticism.

Sunday, 5 February 2017

How did you spend your day?

Peter, a good friend of mine, who’s had PLS (the same sort of Motor Neurone Disease as me) for five or so years longer than me, not unnaturally gets tired and fed up with it. We try to cheer each up with jokes and encouraging stories.

Last week he sent me this short conversation.

Wife: “So, what did you do today?”
Husband: “I changed a light bulb.”
Wife: “And that’s all?”
Husband: “Yes – and I had a drone film it.”

Then comes a YouTube clip. It’s a film taken by a drone of an engineer climbing a 1500 foot high communication tower to replace the light bulb at the top. 

It’s worth a viewing. Click here to see it.

It occurred to me that it is quite a good parable of what life is like with MND. A simple job becomes a massive task. Some tasks become impossible, despite your skilled support team of carers, physios, OTs, nurses and doctors. For example, getting to the toilet is a major and potentially hazardous operation. Eating a meal is hard concentrated work. Not that I’m looking for sympathy. Like the engineer at the top of his 1500 foot TV mast, a task completed brings great satisfaction, and sometimes a view can be breathtaking.

This of course is not only true for people with MND. I have friends with ME for whom any exertion comes at great cost. And I'm sure it's also true for those who suffer from depression. Climbing from the black pit is more than they can bear. Surely you deserve a celebratory video when you make what others might regard as a minor achievement, your own "light-bulb moment"! Perhaps we should share them as well.

(This post is dedicated to my friend, Peter.)

Wednesday, 1 February 2017

The Oxygen of Publicity

Recalling Margaret Thatcher's speech to the American Bar Association in 1985, I find it hard to understand why the media gives Mr Trump so much “oxygen of publicity” which is his meat and drink.

“And we must try to find ways to starve the terrorist and the hijacker of the oxygen of publicity on which they depend. In our societies we do not believe in constraining the media, still less in censorship. But ought we not to ask the media to agree among themselves a voluntary code of conduct, a code under which they would not say or show anything which could assist the terrorists' morale or their cause while the hijack lasted?”

However, I do understand the need to speak truth to power.

I realise that Mrs Thatcher was talking before the era of social media which is the preferred means of communication of both Donald Trump and ISIS/Daesh – interesting that, isn’t it? They both present a slanted or selective view of reality through Twitter or Facebook. But that all the more emphasises the need for the media to exercise restraint in what they broadcast and commit to print. It needs to be as objective and factually accurate as is possible. They need to avoid the lure of the populist and sensational story over the important.

Photo ; Democracy Now
For example, how shaming it is that the preoccupation of the West’s media with the new president of the USA has diverted our attention away from the massive continuing tragedies of Syria and of the huddled masses of refugees facing intolerable cold and hunger, or the triumph in Gambia of an elected president replacing a dictator of twenty years! I am not denying that Donald Trump’s election was a major news story and that his presidency will have a massive impact for good or ill on both the United States and the world. But I am questioning whether, at this stage, it is wise to pander to his apparent vanity. He clearly enjoys being seen to be “doing”. It may be that reproducing White House photos of every executive order signing is counterproductive in making for what is surely to be desired, a leader who consults and considers.

Meanwhile how about the media going off piste, and telling us more about what’s happening in Burundi, Myanmar, Yemen, Cyprus or the Philippines? Help us to lift our eyes above our customary self interest and in the words of the BBC’s origins, “inform, educate and entertain” – aims which in the case of television at least seem to have been turned on their head. I believe this reversal has contributed to a parochialism which is potentially dangerous.

Across the Western world we are witnessing a rise in nationalism. Although often bracketed together patriotism and nationalism are not the same. While patriotism, love for one’s homeland, is a virtue, nationalism is a perversion of patriotism. Nationalism is seeking the nation’s self-interest at the expense of every other. It says, “My country first!” As an aim of government that is evil and we don’t have to look far back in history for the proof. The true aim of government, as of humanity, should be to do justice, love mercy and act humbly, because ultimately we are not answerable solely to ourselves.

"Let me die - naturally" The Future of the NHS - a patient's eye view

Recently the news has been full of stories concerning health.  On 6th January Noel Conway’s application for a judicial review of the Suicide Act hit the headlines briefly.  In the following week the Red Cross described the situation in the NHS as being a ‘humanitarian crisis’, which the government vehemently denied and characterised as hyperbole.  Then Mrs May effectively told GPs that the stress on A&E departments was their fault for not having more weekend opening.  It seems to me that, intended or not, there is the makings of a perfect storm here.

I cannot but sympathise with Noel Conway.  He has the most common form of Motor Neurone Disease (ALS) and is seeking a judicial review of the 1961 Suicide Act on the grounds that it infringes his human rights.  ‘I have a right to determine how and when I die, and I want to do so when I have a degree of dignity left to me.’  I too have a form of MND; mine is Primary Lateral Sclerosis, a very prolonged form of the disorder.  I can utterly understand his fear of increasing dependency, becoming ‘entombed’ in his body and dying.  However I have long argued that legalising assisted dying is fraught with dangers and not the way society should go, no matter its attractions.  The success of its implementation elsewhere in the world is utterly debatable.

My purpose here is not to re-enter the debates which have been exhaustively rehearsed in both houses of Parliament and in all the courts in the land over very recent years, nor to quarrel with Mr Conway’s decision.  I should prefer to step off the carousel of fear to which Dignity in Dying chooses to give an occasional push, and ask, ‘Could there possibly be a different way forward?’ 

I want to explore a radical alternative.  In fact it is a rethink of our society’s priorities and is intimately related to the deluge of health related stories.  Like many industrialised nations we are sitting on a demographic time-bomb.  The baby-boomers are beginning to draw their pensions.  The number of us over 85 is forecast to have doubled by 2030, creating an increasing ‘burden’ as age-related illnesses necessitate more intensive and extensive care.  It all costs money. 

The NHS, if not in crisis, is undoubtedly in dire straits.  An exponentially rising demand on the national purse seems inevitable.  The cheapest solution would be to legalise euthanasia, voluntary or even involuntary.  However 20th century history should have taught us that this is an inhumane road, for example, leading to the deaths of 275,000 people between 1939 and 1945 under Aktion 4, based on ‘the idea that there is such a thing as a life not worthy to be lived’ (Leo Alexander, writing after the Nurenberg trials).  An easy solution but finally unacceptable.

My observation is this: Death is natural; humans causing death is unnatural. Our culture appears to proclaim that death is unnatural, to be feared and postponed at all costs.  Yet it is universally inevitable.  We will all meet it.  Frequently some medical advance or some public health campaign will be greeted as saving so many hundreds, or thousands, of lives, when the truth is it could extend those lives by a few months or years.  The temptation on the cash-strapped research community to allow such exaggeration is understandable.  Doubtless the dream suits the pharmaceutical industry, the illusion of virtual immortality.  However it is a dream, which would turn out to be a nightmare.

Is there a better way?  I believe there is.  First of all, let’s not be afraid of saying that death is part of life.  Instead of making it a fearful monster to be avoided, let’s admit it is a fact to be faced.  And then, as a nation, let’s seek to make the natural process of dying as pleasant – or at least not unpleasant – as possible, something to be celebrated.

Would it not be better if, instead of pouring funding and resources into officiously keeping alive, the national health budget was shifted to surrounding natural dying with comfort and dignity?  We pay lip-service to the importance of palliative care.  We are rightly proud of the history of hospice care in this country.  On average government funding accounts for a third of hospice income.  Charities such as Macmillan Care receive a tiny proportion of their income in grants.  In other words palliative care is predominantly funded voluntarily.  It is true that many people die in hospital (about 50%); it’s also true that most of us don’t want to.  Dying at home is the choice of 83%, a 2014 survey found .   Home care, where possible, is cheaper than hospital care. 

So I suggest a recalibration of the health and social care budget, designed to provide top-quality palliative care nationwide.  This would clearly involve a massive programme of specialist training as well as simple training in home care.  It would mean reversing the policy of cutting the district nursing service.  It would also mean that we rethink the treatments we, the public, automatically demand for every eventuality at every stage of life.  We might have to accept more often doctors saying, ‘I'm sorry that we cannot do anything to prolong your life but we can offer you excellent care for the time that remains to you.’  One doctor told me, ‘Where I believe there is a problem is in highly expensive treatments to prolong lives that are ebbing away either with chemotherapy or intensive care.  We have a clamour that the treatment that prolongs the process of dying for a few months in a trial should be available to all.  Such results are a stepping stone to more effective treatments but not a justification for implementation across the board.’  If the NHS provided better end of life care, then  charities or individuals could step in to plug the gaps in research and non-essential treatments. 

Undoubtedly the definition of ‘essential’ in this context is one for society to debate and law-makers to decide.  It would be intolerable for doctors alone to decide the fate of patients.  Their calling is to ‘tread with care in matters of life and death’, and ‘not to play at God’ (modern Hippocratic Oath).  In order to achieve the sort of end of life care that would mitigate the fear of the process of dying would undoubtedly cost money.  How such funds would be raised, whether through more rigorous rationing of other NHS treatment or through hypothecated taxation or somehow else, is beyond my competence and the scope of this blog.

My primary purpose here is, as a patient, to join calls, such as those made by the 75 leading health experts to Theresa May on 11th January, for radical solutions to the break-down of our health and care system.  It is not a problem for us that can wait for some utopian answer in 2020.  Let’s accept that we’ll die but avoid the unacceptable shortcut of the sirens’ road towards the cheap solution, euthanasia.

(A shorter version of this blog was first published in The Huffington Post on 20th January 2017)