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.)

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?”

(http://www.margaretthatcher.org/document/106096)

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 6^th 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 20^th 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 11^th 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)