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)

Tuesday, 22 November 2016

'Tis most ignobly done

Very reluctantly, I return to a subject about which I have blogged a few times before. I'm provoked to do so by a Sunday morning disturbed by BBC4's Sunday programme. The final item was an interview with a senior bishop and the general secretary of GAFCON (which stands for Global Anglican Future Conference). I gathered that the latter organisation, a sort of international conservative ginger group, had produced a briefing paper for the Church of England bishops who are meeting this week to talk about the Shared Conversations which have been held over the past year and a half to talk about the Church's attitude to same-sex marriage and thus to members of the LGBT community. From the radio interview I learned that this paper had been widely publicised and it named gay clergy and non-clergy and those who were deemed to have transgressed against Lambeth resolution 10:1, a statement about teaching and practice of sexual ethics within the Church.

By now I sense my non-church readers saying, "You what? What are you going on about?" Which I understand. To put it politely it seems arcane and irrelevant. In the end, I forced myself to look at the GAFCON document, and to my mind it is arcane but also distasteful. To put it simply, it creates an easily accessible and well advertised list of gay men and women serving the Church. It is true these folk don't hide their sexuality, but it is the clear intention of the document to expose them to condemning conservative eyes. The Church of England is a surprisingly tolerant church. For example many clergy on the conservative end of the spectrum often failed to wear the prescribed clothes for taking services or to observe the rules about saying services every day in church. But they didn't get into trouble as a result. Church rules change - usually because custom has changed, or because society has changed.

I gather that by the time I read the document its numerous inaccuracies had been corrected or footnoted. Even so, in one footnote about which I knew something the original inaccuracy had merely been amended into an innuendo starting "According to some reports...". A simple look at the organisation in question's would have been enough to confirm its pastoral and supportive nature. I hesitated about whether I should say anything and in the end decided to write to some bishops, in order to make it clear that although my background and theology is, I suspect, near to the tradition of GAFCON, not all of us feel the same about this issue.

Some of what I wrote follows:
"Personally I no longer hold the view I once maintained, I’m ashamed to say, that homosexuality is a sin against nature and against God.  I believe that arose from a too simple reading of the Bible out of its context.  Having witnessed the pain and alienation of LGBT friends both within the family of the Church and on being forced to leave, I don’t believe it was right.  I’m grieved that, having led the way in the decriminalization of homosexuality in the last century, the Church of England nevertheless persists in inflicting its own form of punishment on its homosexual members, I suppose in God’s name.  The damage done to such people (including my friends) is generally severe in its effect and unloving in its intention. 

"I trust you as bishops will dismiss the GAFCON document.  It seems to me inappropriately political, not becoming of a Christian conversation.  It also seems unacceptably personal.  The excuse of it being “evidence” or already being in the public domain is disingenuous.  It appears that even the journalistic courtesy of informing people was not observed.  The speculation concerning individuals’ private lives was far from Christian.  Indeed the whole document seemed above all to lack that most excellent gift of charity.  (I’m aware by the way that lack of charity has not been a one-way street, and appreciate the Archbishops’ wisdom in resisting the impatience of pressure groups from both sides.)

"I simply want to make it clear that not all conservative evangelicals agree with the line which GAFCON represents.  I would like to celebrate, both personally and as a Church, genuine lifelong vows of commitment of heterosexual and homosexual couples.  I want to affirm Christ-like self-giving love."

Let me add my usual final caveat. I am not a theologian. Don't be persuaded on this or any other issue by me. Listen to the still small voice within. It is entirely possible that I may be mistaken, but not, I believe, in upholding the overwhelming imperative of love.

Wednesday, 26 October 2016

A nightmare versus a dream

The fact that the Conservatives won't oppose Zac Goldsmith in the by-election for Richmond Park says it all. What more eloquent testimony could there be for their lack of conviction that "this is the right thing for the country", as Chris Grayling, Secretary of State for Transport, has adopted as his mantra? If it is, then make the case so persuasively that the residents of Harmondsworth, Harlington, Sipson, Longford, and Richmond vote for you. See how those directly affected by the environmental pollution vote. They might agree.
Photo : Premier

The project will apparently generate employment for thousands and billions of pounds of national wealth. What's not apparent is why this proposal would generate more than any others - except perhaps in demolishing 950 homes and resettling their occupants, presumably in places not of their choosing, and bulldozing an ancient church and village green. As too often with current governmental decisions, the public rationale is financial and not human. Value for money is elevated above quality of life. There is the implicit accusation of selfish nimbyism. "Take a hit for the rest of us" has been the political philosophy of the past couple of administrations, addressed to the most vulnerable within society - the easiest to target.

However, it's all very well to be negative. What better solution is there? The London airport commission, we are told, thoroughly examined the alternatives and ruled in favour of a third Heathrow runway. Clearly I've not read the report, but I strongly suspect that its overriding criteria were economic. Reluctant though I am to admit any merits in one of Boris Johnson's madcap dreams, I do in fact think that his Thames Estuary island scheme was the most visionary. A brand new hub airport with approaches over the sea and 21st-century infrastructure into London would of course cost more than building an extra runway, but as the Transport Secretary has been at pains to affirm it would be provided by private finance. And the human cost would be far less. Maybe it would impinge on the good burgers of Essex and Kent, were the flight paths badly delineated. Yet one could envisage an eventual reduction in the impact of Heathrow as it ceased to be the hub airport for London, the UK and the world.

I recall the days when there were soundings for a new London airport in rural Buckinghamshire (for example at Wing). Fortunately those were binned. Hopefully Heathrow's third runway will go the same way, and Boris Island will rise from the waves. Now that would be a small legacy to offset the disaster of Brexit.

Wednesday, 21 September 2016

An Olympic cautionary dose

When I was at school, we all knew that the most unjust type of sanction was collective punishment – you know the sort: when the whole class is kept in detention for one person’s misdemeanour. It’s the last resort of the ineffective teacher. “I know someone’s been smoking in here, and if they don’t own up in the next minute, I shall keep the whole class back after school until I get the name.”

I remember well the first time I was on the receiving end of this sort of sanction. I have no idea what the offence was. I was still in junior school and I remember the class being lined up at the top of the basement stairs, prior to being marched down to have the cane administered by the ex-army-captain headmaster. In fact, I’m ashamed to say, I was so scared I feigned sickness and avoided my fate and so was launched into a propensity to intelligent deceit. I did later get my fair share of rapped knuckles from Fido, the length of quadrant wielded by my moustachioed Maths teacher.
Graphic showing estimated civilian casualties in WW2, Memorial Civiles

When we were away on holiday in France this summer, we visited the moving Memorial des Civils museum in Falaise which records the civilian cost of World War 2. There was an exhibit there which listed something like 20 men from a village, taken to concentration camp, after German military trains had twice been blown up nearby by the resistance. One man came back. A pattern repeated thousands of time in war, no doubt. The museum reminded us that our Soviet allies lost 36 million civilians in the defeat of Nazism, far more than the rest of Europe put together. Which is, by the way, one reason why I consider our officially sponsored populist anti-Russian narrative so misconceived.

You may surmise from this that I rate collective punishment as a very low form of life. And I was sorry when the Olympic authorities, almost, and the Paralympic totally imposed a blanket ban on athletes from the Russian federation. It seemed to me a denial of natural justice. Whatever the rights and wrong of the McLaren report on state sponsored doping in Russia, it’s clear that some innocent athletes were barred from competing by the bans, and I suspect guilty ones from elsewhere competed, perhaps making intelligently deceitful use of TUEs (Therapeutic Use Exemptions).

Whatever the case, it seems that the whole affair was hurriedly and clumsily mismanaged – which of course worked to GB’s advantage. True, GB did wonderfully well in both Olympics and Paralympics in Rio, and their medal haul exceeded even the London Games. But then they would have won more, wouldn’t they, with their main competitor for second, third or fourth place removed from the picture? I wouldn’t want in any way to rain on their parades. They deserve our very great admiration, but let’s keep it in perspective and hope that by 2020 Russia will be back in the mix.

Saturday, 30 July 2016

Saturday 30th July 1966

Fifty years ago today, I was in Istanbul. I remember it clearly because we called in at the consulate there to hear the result of the World Cup Final from Wembley, before crossing the Bosporus to camp on the eastern side.

I was in my teens then. One brother was doing a gap year in Iran. Another was doing post-graduate studies in Jerusalem, and the third was mid-degree at Cambridge. At the end of the war my father, an RAF chaplain, had been posted in Palestine where he worked in the Moral Leadership School based in Jerusalem. During that time he had acquired a unique knowledge of Biblical topography. Among other things in her busy life my mother had been bringing up four boys in the post-war years. My Cambridge brother had the crazy idea for using his long vacation: how about the family in the UK driving overland to Jordan, meeting the other two in Jerusalem, and then returning via Israel and Greece?

There were a number of complications, although none as big as they'd be today. It was mainly a matter of getting all the necessary visas and not letting on that we were visiting Israel (as even then the surrounding Arab countries would not have let us through had they seen an Israeli visa on our passports). It was the year before the Six Day War. There was one big problem. We had the car, a shiny black Consul 375, a roof rack, a tent, a home-made awning which could be attached to the roof rack - but we had zero mechanical know-how between us. However we did have a good family friend, Peter, a post-graduate engineer, who knew more than we did, and although he couldn't afford holiday for the whole trip, he would accompany us on the outward journey. My brother from Iran would take his place on the return leg.

The car stood up to the journey pretty well. I think we broke down first on a German autobahn, then in northern Yugoslavia (as it was), had its exhaust replaced in Ankara (very efficiently) and lastly was driven into a ditch by a friendly local lad while we were walking through Hezekiah's Tunnel in East Jerusalem. In Yugoslavia our breakdown was enlivened by a local boy with a crewcut and big grin - perhaps barely eleven - whose conversation on finding we were English largely consisted of naming all the England football team, "Bobby Charlton (rolling the 'r'), Bobby Moore, Jacky Charlton, Gordon Banks...." He knew them better than us. We had no car radio, but we did discover England had reached the final, and so we made for the consulate on Saturday 30th July 1966, to discover that England had won.

There are many tales to be told of that eventful journey, but talking about it today with the brother who masterminded it we reflected how different, indeed how impossible it would be now. I think we drove through Holland, Germany, Austria, Yugoslavia (now Slovenia, Croatia and Serbia), Bulgaria, Turkey, Syria, Lebanon and Jordan to Jerusalem; and, having crossed to Israel, by boat to Greece, Yugoslavia (now Macedonia, Montenegro, Serbia, Bosnia & Herzegovina, Croatia and Slovenia), Italy, Switzerland and France. Bulgaria I remember as quite militarised, along with the ox carts. My brother was chatted up by a drunk Syrian "prince" when we were camping outside Damascus, our friend had his film confiscated after taking a photo of an Italian WW2 aeroplane in Lebanon and I was ordered out of the car at the Jordanian border in order to see whether my hair was too long. I still wonder if they would have given me a number one on the spot. Apparently I passed. But that was the sum of our difficulties. Oh yes, and we got soaked in Austria, eventually resorting to a hotel in Vienna, the Roter Hahn, who were understandably dubious about these bedraggled individuals dressed for camping rather than sightseeing. In the end they gave us a room. And then on the return journey crossing the Mediterranean rough enough for seasickness my father dubbed our converted coaster ferry, the Black Hole of Calcutta, with so many crammed in cabins and on the deck.

BBC Exodus : Our Journey to Europe
Jane and I have just been watching the BBC's moving trio of programmes called Exodus: Our Journey to Europe. The description read, "In 2015, we gave cameras to some of the people who smuggled themselves into Europe, to record where no-one else can go. The result is a terrifying, intimate, epic portrait of the migration crisis." Many of the places were where we had travelled 50 years ago. Through Europe borders are closed or manned by armed border guards, which to my memory only seriously occurred in the Middle East on our trip. Now central Europe is struggling to cope with the desperate migrants and the fear of terrorism. And of course after the coup Turkey is no longer the relaxed welcoming place we knew. No way would or could we cross Syria, that poor war-shattered country. What a mess we have unleashed! How different from the order of 1966!

And our discomforts were less than nothing when we watch the refugees ruthlessly exploited by the people smugglers, loaded into overcrowded inadequate boats to face the Mediterranean, trudging through all weathers for mile after mile, being refused entry to countries, struggling for survival in "The Jungle", fleeced by con men. What has happened to progress, to the optimism of evolution? When the media have not been preoccupied with Brexit and the turmoil of domestic politics, they have used the First World War to fill up spare hours and pages. "The war to end all wars". A hundred years on the world is as violent and war-torn as ever. 

So today, I'll not be madly celebrating what the BBC, in its customary hyperbolic style, this morning dubbed "the greatest day in British sporting history", but reflecting instead on the folly as well as the goodness of human nature.