MND Musings - formerly Diary of a Donkeybody - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I've found a dancing joy nonetheless.
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
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.”
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
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 (http://www.happyvalleyfestival.co.uk/) - 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.
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:
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
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?
… 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?
and I think over the years you do, you become a bit more immune to it.
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
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
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.
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
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.
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
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
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 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.
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
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
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
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)