Thinking more about killing oneself (further thoughts on the Terminally Ill Adults [End of Life] Bill)

But it's not a matter of killing only oneself. "No man is an island entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as any manner of thy friends or of thine own were; any man’s death diminishes me, because I am involved in mankind" (John Donne, former MP, in his most famous sermon). 

The euthanasia juggernaut has been gathering momentum through the western world. In this country it appeared as the Voluntary Euthanasia Society, to be later rebranded as the richly endowed Dignity in Dying. It’s been beavering away for decades, with well publicised personal stories and legal cases which have been very effective in persuading general opinion that dying is frequently nasty and that we should have the right to choose when and how to die. That organisation resisted using the term ‘suicide’, which is what they advocate, realising that it opens up the accusation of devaluing life. So I’m not surprised that MPs have after an impassioned debate by a narrow majority eventually given way to the pressure.

A fortnight ago I had my annual check-up at the MND Clinic and subsequently received the GP letter. 
“Date seen 02/06/2025…  Diagnosis (this visit) Primary Lateral Sclerosis…  Symptom onset 2000”.

I well remember the year 2000, my voice deteriorating, my balance starting to fail me, resulting finally a year later in the consultant’s verdict, “You have a Motor Neurone Disorder.” Well, I knew what that meant as at the time Diane Pretty, backed and publicised by the Voluntary Euthanasia Society, was fighting through the courts as far as the European Court of Human Rights for the right for her husband to take her to commit suicide in Switzerland in the Dignitas “clinic”. It was frightening time to receive an MND diagnosis. It still is, as the normal progression of the conditions that come under that label is both swift and relentless. However “in the majority of cases, death with MND is peaceful and dignified” (MNDA). 


At that time I could have been depressed; I could have known how much care I would need, how much it might eat into our savings; I could have feared the physical and emotional toll it would take on my wife; I could have been desperate about the future. Certainly I was vulnerable. Fortunately I was of an optimistic nature and had plenty of reasons for living. But it could easily have been otherwise. I might well have panicked and opted for a doctor to help me die, if the law debated in the Commons  was in effect. Then I wouldn’t have seen two sons getting married nor grandchildren being born and growing up. I would have missed out on twenty years of an increasingly restricted but paradoxically fulfilled life. Of course you might argue that I’m ‘lucky’ to have, as became clear over the years, my exceptionally rare and slow form of MND, but I wasn’t to know that, as indeed none of us do despite our doctors’ best predictions. Indeed I am lucky to be alive.

However it was my experience that brought me face to face with the fact of my own mortality and the issue of assisted dying. There seemed to me to be four main drivers. First, the desire for autonomy; second, the insistence of independence; third, a sort of compassion, and fourth, finance. There were two further factors: fear of death and fear of being “a burden”. 

It’s a modern western concept that humans are by nature autonomous beings, meaning that choice is an inalienable right. I once co-wrote a book with the title, I Choose Everything, based on a quote of Therèse of Lisieux. It was from a childhood incident, but it did not mean she reserved the right for total autonomy, but rather the opposite. As she later wrote, “I fear only one thing: to keep my own will; so take it, for ‘I choose all!’ that you (God) will!” Absolute choice is not a virtue. Choosing where to drive your car is not a virtue as it can endanger other road users. There are many limitations on freedom or taboos that protect others in a society. Taking someone’s life directly or indirectly is a universal one. Individuals submitting to a higher authority holds a community and a nation together.

Another related modern heresy is the ideal of independence. How utterly fatuous this is! None of us is born independent. We’re born relational. All of our lives we are interdependent. Being cared for is not to be lacking in dignity. Being 100% dependent does not deprive someone of their human dignity. Even the most disabled person is a human being made in the image of God. It is a dreadful thing when a society regards the disabled, the dependent, the different, the mentally deficient and the declining as inferior and potentially disposable. Of course the advocates of the Bill would vehemently deny that they or it implied any such thing. Yet the history of the twentieth century bears witness to how subtly a society can be seduced by the pernicious philosophy of eugenics. 

It is a modern paradox that medical advances have contributed to the illusion that death is to be feared. Yes, death has always been the last enemy and, yes, we hope it will be peaceful. But we shall all die. Contrary to received wisdom, the compassionate response to that fact of life is not to “put someone out of their misery”; compassion (literally suffering with) means to be with them in their suffering. This is what good palliative care provides, making the end of life dignified, worth living and even pain free. As Gordon Brown pertinently asked, “When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?”

Of course palliative care costs more than facilitating patients to take their own lives. According to the Daily Mail “Legalising assisted dying would save the taxpayer £10million in NHS costs in its first year, rising to £60million after a decade, according to grim new estimates published by the government.” The estimates are indeed grim, but also attractive to politicians straining to balance the national budget. Yet they raise the fundamental question: do we want to live in a society which values money over life? 

Which is the most fundamental of all the issues: the sanctity of life has been a core principle central to all the Abrahamic faiths, which undergird our culture and way of life. In the words of Job on hearing of the death of all his children, “The Lord gave and the Lord has taken away.” The start and end of life are not ours to determine. We lack the wisdom of God.

Apparently the majority of our parliamentarians have decided to place that prerogative into the hands of suggestible and distinctly fallible humans beings. However the juggernaut has an insatiable appetite. We or our children shall, I fear, reap the whirlwind. 

Ian Birrell in his clearly argued opinion piece in the i newspaper puts it well: "Westminster seems far more focused on helping people to die instead of delivering the chance to ensure every British citizen can live their fullest life from birth to death."

 

[Blog based on my article in Seen and Unseen, where Graham Tomlin's article is worth reading: "What will stop the culture of death that libertarian Britain has embraced?"]  

On Assisted Dying - a letter to my MP

On 7th October I sent my newly elected MP a letter:

Olly Glover MP                
House of Commons
SW1A 0AA
 
Dear Mr Glover
    

 First, may I congratulate you on your election as our MP.  It was the first time in my memory that someone I voted for has been elected - and I’m now 75!  So I was delighted.  You got my vote not only from a desire to oust the rotten Tory government, but also because of Sir Ed Davey’s obvious concern for the vulnerable in society, like his son, and for their carers.
    You see, I have Primary Lateral Sclerosis, the rarest and slowest form of MND, and my wife has been my sole carer for the last twenty-two years.  As you’ll appreciate, looking after an increasingly disabled aging husband is no small burden, and being increasingly and incurably incapacitated is no joke — and yet we have a remarkably fulfilled life, even if physically circumscribed.  For example we were able to celebrate our golden wedding with a long weekend with our four children and their families this summer.
    The reason for telling you this is that, as you’ll understand, I’ve had a long time to think about assisted dying — not least as my own end approaches.  MND is one of the classic conditions which Dignity in Dying teaches us to fear.  Well, it is a cruel disease from which at the moment there is no escape.  However, the MND Association is actually reassuring about dying (and they should know): ‘The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working… Specialist palliative care supports quality of life through symptom control, practical help, medication to ease symptoms and emotional support for you and your family... In the majority of cases, death with MND is peaceful and dignified.’  So I’m under no illusions about the complexities of end-of-life.
    And I do realise it’s far from a simple issue — and in a way I’m glad it’s going to be discussed thanks to Kim Leadbeater’s early day motion.  But may I ask you to bear in mind when you consider the pros and cons some of the following.
When I was diagnosed as having ‘a motor neurone disorder’, it would have been very easy for me at that point to have assumed the worst and ended it all, had there not been the safeguard of the 1961 Suicide Act.  Prognosis in many conditions (including cancer — remember the Lockerbie bomber?) can only be an approximate art.   
    Not being depressive by nature, I’m lucky, but even I have my dark moments when I wonder how much longer….  For those more prone to depression the temptation to suicide must seem irresistible even though family and friends would be devastated by their loss and they themselves could miss out of more years of real fulfilment.
    I do understand why friends of mine have asked their palliative care doctors not to prolong their lives, but relieve both their symptoms and their pain, and why the professionals have agreed.  That seems to me both right and caring.  There’s a difference between not officiously prolonging and deliberately shortening; and the difference is intention.  
    Life is precious.  I don’t believe it’s our possession; but we are a part of life.  When it lets us go, we should go gracefully; but until then we shouldn’t dispense with it.
The pressure to end one’s life when in my situation is more internal than external, though no doubt there are some unscrupulous families who would wish their ailing or disabled relatives gone.  I remember early in my disease meeting an old lady in a supermarket car park who told us she was just a burden and would be better off dead.  I can now understand her sentiments, but surely the answer is greater valuing and care for every individual.
    I wonder whether the Prime Minister’s enthusiasm for legalising assisted dying has been in any way bolstered by the £20 billion black hole the government has ‘discovered’ in the national coffers, as it would a much cheaper way of taking ‘care’ of us as we approach death than palliative care.  I’ve no doubt that consideration is not what is motivating Ms Leadbeater.  However I’m sure you would agree that living in a society which valued money, or indeed anything, over life would be a desperate thing.
    Reflecting on today’s anniversary (Holocaust Day), I have read again Elie Wiesel’s 1986 Nobel lecture, as he considered how events can take on their own momentum, only to be perceived in retrospect.  ’And yet real despair only seized us later. Afterwards. As we emerged from the nightmare and began to search for meaning. All those doctors of law or medicine or theology, all those lovers of art and poetry, of Bach and Goethe, who coldly, deliberately ordered the massacres and participated in them. What did their metamorphosis signify? Could anything explain their loss of ethical, cultural and religious memory? How could we ever understand the passivity of the onlookers and – yes – the silence of the Allies?’

    As Liz Carr’s BBC documentary reminded us, introducing assisted dying from the most compassionate of motives has scarcely, if ever, remained within its original limits.  I think we all need to be aware of unintended consequences, which history teaches us can be far-reaching - which none of us can predict.
    May I respectfully suggest that for Parliament a potentially more constructive consideration of end-of-life care could be (a) to invest much more generously in palliative care. - Isn’t it the case that hospices rely largely on charitable giving? - and (b) to protect the medical profession better when they are faced with the dreadfully difficult decisions around the end of patients’ lives.  
    Thank you for reading this letter, and may I assure you of my best wishes when you face this very complex and sensitive issue.

Yours sincerely

After a month Olly replied with a much more considered and longer response than one normally receives from an MP. I think he was suggesting that the subject should be exhaustively debated. "With these concerns in mind, I am worried that introducing this measure as a Private Members’ Bill will not allow for full debate and scrutiny of all the relevant provisions.  For that reason I have put my name to a letter to the Prime Minister and Leader of the House, recommending they bring forward a Bill in government time, in order that it has sufficient parliamentary scrutiny and to ensure public confidence in such an important decision." 

I hope my MP's letter is heeded, and that Gordon Brown's proposal for a commission on palliative care is adopted as a better way forward.

In praise of physiotherapists

Dedicated to Emily

I'm fortunate to have had excellent physiotherapists, starting of course with my lovely wife (MCSP [distinction]). Then in addition for many years the specialist neuro physio, Lesley, who last year passed me on to Emily. When you've been used to someone, there's always uncertainty when you have to transfer to a new professional; but I needn't have worried. Emily is brilliant. How lucky am I!

To give you a small example: I have been finding walking round the house with my rollator (zimmer frame on wheels) increasingly difficult and slow. My legs have been tending to cross over and my feet land on each other. Every now and then I had to call Jane to untangle me. Emily suggested a free metronome app on my phone might help. She set it at 42/60 - not fast but my sort of average rate. It has transformed my walking. The reason is, I think, that walking is now no longer a reflex action but I have consciously to move each leg. ie I have to concentrate on each step. Before the metronome, my brain, willy-nilly, would wander down its own wayward neural pathways. Now the metronome calls my brain to attention every beat and doesn’t let it  wander.

I now have a heavy cold and am feeling unduly sorry for myself, but still the metronome dragooned me from the lift to the breakfast table. As Jane commented when I had sat down without much fuss, “You’d never have been able to do that before the metronome.”

Of course that’s not the only thing Emily sorted out. I have a whole sheet of exercises to stop me going utterly flabby, including boxing (!), stretching and pedalling. I’m having time off, pleading sick leave, at the moment, but the prospect of a phone-call when she’ll check up on me should be sufficient to keep me at it! I’m so grateful for the NHS through whom I receive such skilled treatment – as well as from my dentist, doctor, OTs and hospital clinic. May they never be privatised!

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 17^th 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.

Don't screen us out

There are so many things on my mind at the moment, from academy schools and benefits to the simple joys of spring. There was a very good programme just over a week ago on the BBC called The Battle for Christianity, presented by Professor James Beckford, who pointed out the frequently proclaimed demise of faith in this country has been greatly exaggerated. A very informative programme.

However, that's not first on my mind. I recently saw a title I liked, "From Conception to Completion", which to my mind means that we should be concerned about life from its beginning to its end. This post is concerned about its beginnings. I wrote to my MP on 18th March:

Dear Ed

Monday is World Down's Syndrome Day, I gather, so I hope you won't mind my writing to you on a matter of personal interest to me.

My goddaughter's (now in her 40s) older sister was born with Down's Syndrome and is still living a fulfilled life.  Much, I'm sure, is due to the care and hard work that her parents devoted to her in her early years.  In my view and in theirs it would have been tragic if she had been screened out before birth.  Ultimately she has enriched their lives.  I think there is a real danger in pursuing the trend to eliminate prenatally any babies who do not conform to our standard view of what is "healthy".  I suspect it was this sort of policy that led to the dangerous rise of eugenics pre-war.

The UK National Screening Committee (UKNSC) has recommended that a new technique, 'cell free DNA' (cfDNA), is implemented into the country's Fetal Anomaly Screening Programme (FASP). This is an antenatal  programme by which pregnant women are given tests to detect whether their unborn babies are disabled through initial blood tests, and on the basis of the probability these give, the choice of more invasive prenatal diagnostic (IPD) tests.

IPDs carry a risk of miscarriage and a small minority of women do miscarry due to them. The cfDNA technique meanwhile, is a non-invasive prenatal test (NIPT) that works by genetically analysing fetal cells in the mother's blood for signs of fetal anomalies. The UKNSC believes that introducing cfDNA as a secondary test, would reduce the numbers of women that go onto IPDs, and thereby reduce the miscarriages that are caused by them.

A pilot study that the UKNSC themselves commissioned, however, concluded that if implemented, cfDNA would lead to 102 more Down's babies being detected every year.

The latest figures (http://www.binocar.org/content/annrep2013_FINAL.pdf) tell us that 90% of babies who are prenatally diagnosed with Down's syndrome are aborted. Much of this is due to the pressure that parents feel to abort their baby due to some bias in the system, and the profound lack of information or support offered to them. If then, as the UKNSC pilot study predicted, 102 more babies with Down's syndrome would be detected due to cfDNA implementation, 92 of these would be aborted. Based on the most recent figures for Down syndrome births (2013), this would mean a decline of 13% reported live births of babies with Down's syndrome.

This would have a profound long-term effect on the population of people with Down's syndrome in the community and enable a kind of informal eugenics in which people with certain kinds of disabilities are effectively 'screened out' of the UK population before they are even born. Implementing cfDNA at this stage would effectively mean introducing a worsened form of informal eugenics into our culture than already exists.

Would you please consider talking to Jeremy Hunt MP, asking him to halt cfDNA implementation and provide medical reforms that will bring support to people with Down syndrome  and their families and alleviate the discrimination that they commonly experiences.

If would like to read more on this, please visit the campaign site www.dontscreenusout.org.

Thank you.

Yours sincerely

Down's syndrome children face extinction

I confess that the meat of this letter was borrowed from the admirable Don't Screen us out charity, but it is something about which I feel strongly, as I believe many people with disabilities do. They see the tendency by "normal" people and politicians to view their lives as not worth living, and therefore better to eliminate before birth. Whereas I, having lived an active "normal" life before my MND, understand now in a way I hadn't fully seen before that living with disability or "abnormality" is by no means an inferior sort of existence. Indeed only yesterday I received an email from a fellow MND patient who said that she felt she was a "stronger and better person" now. Too easily do those who pass laws for us assume that they know the answer; too often, I fear, they are led by economic convenience rather than by human understanding.

We should not forget that the Nazi pogroms had their roots in apparently benign eugenics.

Anyway I had a reply from Mr Vaizey - which contained, to be honest, pretty much what I had expected, the standard government-speak statement.

Dear Michael,

Thank you for contacting me about non-invasive prenatal testing (NIPT).

I understand your concerns and I recognise that with the correct help and support, most people with Down’s syndrome are able to lead healthy, active and more independent lives.

The NHS Fetal Anomaly Screening Programme (FASP) in England offers women choice in pregnancy. Screening is described as an option, not an inevitable aspect of routine antenatal care. The screening programme is careful to explain that choosing not to have the test is a valid option for a woman. Women are invited to make an informed choice based on their own values and beliefs about whether to participate, and regarding options following receiving their results.

The UK National Screening Committee (UK NSC) advises Ministers and the NHS in all four countries about all aspects of screening policy. In January 2016, the UK NSC announced its recommendation that screening for Down’s syndrome using non-invasive prenatal testing (NIPT) be introduced as an additional test into the FASP, as part of an evaluation. This follows a full review of the published scientific and cost evidence relating to NIPT, following combined testing. A copy of the UK NSC’s review is available at http://legacy.screening.nhs.uk/fetalanomalies

Ministers welcome the UK NSC’s important recommendation on NIPT which has the potential to transform antenatal care. I know that the Government is currently considering whether this could be introduced as part of the NHS FASP.

Thank you again for taking the time to contact me.

Yours sincerely,

To give him his due, as well as being a minister of state, Ed Vaizey is a good constituency MP, and I believe he does give such ethical matters his serious attention. 

I just hope that we never reach a brave new world of standard model human beings.

One hot Friday afternoon

Having recovered from the tremors of the General Election and having found a replacement for my coffee-drowned laptop, I'm returning to my blogging. I'm not arrogant enough to imagine my pearls have been missed!

It was a somewhat strange afternoon yesterday. I'd been catching up with Question Time, which began with questions about immigration and the National Health Service. The discussion on the latter was about 24/7 doctors. Owen Jones made a fair point about GP training taking seven years and the government taking credit for an increase in their number. A woman in the audience was saying that private care was the solution to that. Then we had to cut it short to go to the MNDA Branch meeting at the Holiday Inn at the infamous Peartree Round on the north edge of Oxford.

As we approached the Oxford ring road, the traffic tailed back and on the ring road it was nose-to-tail stationary. We made the snap decision to drive through the centre of Oxford, which seemed wise, until we reached half a mile from our destination and yet another traffic jam. As a result we arrived a good quarter of an hour after the talk had begun. That means that the comments which follow may not be justified, but this is the impression I received. A private physiotherapist who had previously worked for the NHS was talking about how physiotherapists can help people with Motor Neurone Disease.

I suspect she had asked how many people knew about the Oxfordshire PDPS (People with Disabilities Physiotherapy Service), and I guess there was a sparse response. That may not be surprising: I for one had never heard it called that. But I had been referred to a specialist neurology physio immediately I'd been diagnosed 12 years ago, and all my friends in this area, dead or alive, also have had their physios. And, because it's easier to say, we call them neuro-physios. So I'm personally not so sure how much substance there was to her implication - which is where Jane wheeled me in - that people with MND were not referred to a physio and were poorly served by the PDPS. It's true that the neuro-physios in Oxfordshire are thinly spread and that we might have a wait to see one, but I am pretty sure that the excellent Oxford MND Centre would see to it that the physio service is alerted to the most urgent cases. My level of care from my physio has been above reproach. We must not allow the NHS to become a second-class service or to be regarded as one.

One thing I reacted against was the habit of both the private physios there to refer to patients as "clients". For some reason it seemed utterly impersonal and underlined that private medicine is more in the world of business than of care. There's a widespread preference in the MND community to be referred to as people, people with MND.

On the plus side, there were two carers at the meeting, both, I think, from abroad - part of this undesirable surge of immigration (sic, UKIP). The quality of their care and attention to the people they had brought was lovely to see. One of our friends whom we've known for years looked better and happier than when we first met - which considering she, like me, has a degenerative condition is amazing. Her carer is an EU immigrant, from Poland. She's employed by an agency and no doubt gets paid poorly, too little to attract carers of a similar calibre from this country. I doubt she'd be classed as a skilled worker - but she makes a world of difference to one person with a rather nasty disease.

As we drove home, without let or hindrance on the roads, I reflected how grateful I was for the National Health Service, what a benefit immigration had been to this country and how very careful we should be before we tampered with either. And how holding meetings on a half-term Friday in May might not be such a good idea!

Our two minutes of "fame"!

I must say happy though I am for the predictable recognition that Eddie Redmayne received on Sunday night for best actor at the Oscars - and the dedication he made to people with MND/ALS in his acceptance speech, I am disappointed that no recognition was afforded to Felicity Jones for best actress, portraying Jane Hawking. As I've commented previously his was a bravura performance of a bravura role. Her role was far from bravura and demanded a subtle contained performance, and that was exactly what she gave it: beautifully nuanced, tracing the patterns of shade and light in the highly condensed account of a relationship of more than forty years. I would have dedicated her Oscar to all the unheralded carers of us who have the disease in one form or another. As one of our friends whose wife had a frighteningly fast type of MND said to me after watching the film, "I thought it was brilliant but, oh, how painful it was to be reminded of that journey!"

On Sunday the BBC Songs of Praise team decided to base their programme round the Oscars. They interviewed Jane Hawking in Cambridge and filmed her singing in their church choir conducted by her present husband, Jonathan. She was great, very articulate and clear about her faith. Someone in the BBC had seen my previous post about the film, and thought that an interview with my Jane and me might fit in as an added extra. I suppose the parallels of my having MND like Stephen Hawking and our both having wives/carers named Jane worked nicely. So nine days previously, before we went on a short break, the film crew arrived with the presenter, Claire McCollum - loved her Ulster accent! - , and all their equipment. They certainly knew what they were up to. While Nick, the cameraman, Lindsey, the researcher, and Karen, the producer, worked away at setting up the equipment, removing the ticking clock (!), and arranging the shots, we relaxed and chatted to Claire. I suppose the actual filming took under an hour, mostly in one take - for which I was grateful as it's never easy to repeat exactly what you said (unless you're an actor, I suppose).

Anyway they soon packed up and zoomed back off to Media City in Salford, and next day we went off for a break in Devon. I put Songs of Praise on to record - of course. But we were actually able to watch it live, but it wasn't until half way through the programme that we were sure we'd appear. In what was a rather good programme over all, ours was, I think you might say, a cameo performance - being a minute or two long - but I must say I thought Karen had edited all my waffle very skilfully. As I've said elsewhere, there always things you wish you had added. When Claire asked me something about my strong faith sustaining me. My answer was something like, "I'm not so sure about it being 'strong'. Sometimes it feels I'm hanging on by a thread…". That's when I wish I'd said, "But I've discovered that God keeps holding on to me firmly."  However our bit ended positively with Jane talking about hope and then an upbeat contemporary worship song.

Afterwards it was fun following the Facebook comments which dribbled in that evening and the next day. One of the nicest comments, on Twitter, was from Claire McCollum herself:

"Feb 22: @mwenham you and Jane were just brilliant! So glad u enjoyed it. A pleasure to work on this one! Take care. Btw really enjoyjng ur book. C" (Which reminds me, you can get discounted copies of My Donkeybody by contacting me on michaeltwenham@gmail.com!) 

So I'm happy on this occasion both to compliment the BBC for a job well done and to congratulate the Songs of Praise department on a nicely crafted programme. And finally I must say how good the film crew were and of course how lovely Claire the interviewer was!

"Keep your mitts off my NHS"

Last week there was a speech at the Labour Party conference which, in my opinion, knocked the spots off any I've ever heard from a politician of any colour. I know politicians usually enter politics out of conviction, but they nearly all seem to get sucked into the slimy world of focus groups and spin. Power,  or the love of power, does corrupt. It was beautifully constructed and delivered by 91-year old war veteran, Harry Smith. He described his childhood in depressed Barnsley and the death of his sister of TB, as the family couldn't afford treatment for her. "My childhood was not an episode from Downton Abbey." Watch it here: Harry Smith on the NHS

I was reminded of this when I went to our local surgery on Monday. I wanted to ask my GP some things, and I needed a regular blood test. First it was to the phlebotomist (the nurse who specialises in blood tests). Not only did she take it to test my drug level and liver function, but "Why not do these others while we're at it?" she said. I lost count of them. Then she said to Jane and me, "Have you had your flu injections yet?" The answer was no, although Jane had had her letter. "Would you like me to do them now - get them out of the way?" And so she did.  And saved us an expedition.

Then we sat in the waiting room for a bit, until the doctor came and summoned me. The major question I wanted to discuss was about the pneumococcal vaccine. As I'd written to my friends who have slow forms of MND, "I've received a letter from my local surgery, headed 'Pneumococcal Vaccination'. It says, 'Our records show that in the last month you had your 65th birthday, congratulations!' Then it goes on to explain it's usually a one-off jab to protect against a number of infections including pneumonia. 'We would like you to be vaccinated now....' In the old days, pneumonia used to be called 'the old man's friend'. (As Net Doctor puts it, 'pneumonia is called the old man's friend because, left untreated, the sufferer often lapses into a state of reduced consciousness, slipping peacefully away in their sleep, giving a dignified end to a period of often considerable suffering.') I'm not sure whether I want immunity from pneumonia. I wouldn't mind dying sometime. I'm inclined to say yes to the yearly flu jabs, but no to a lifetime pneumonia one. I wonder what others think about this." My GP listened and heard exactly what I was saying. I don't imagine she had ever had a patient with MND raising that dilemma before. She didn't hurry to reply. In the end her answer reassured me. The vaccine doesn't give complete immunity and by the time I'm ready to pop my clogs it will probably be even less effective. In the course of our conversation we talked about whether I would want treatment and resuscitation at the moment, were I to get an infection - to which the answer was Yes. Life may be limited and frustrating, but it's definitely good, and I'd like to enjoy this gift while I may. There will no doubt come a time when I say, "Don't interfere anymore, thank you," - which, you will appreciate, is entirely different from, "Please have me put down."

I also had three others things to ask her, including about respite care. At no point did I feel she was clock-watching. She was focused on me. We concluded at the end that I would have the pneumonia jab, and Jane had the good idea that I might have it then as well. So we asked the receptionist if there was a chance. And there was. She fitted me in with a nurse. Thus I left, after about an hour, having had blood tests, flu and pneumococcal jabs and a consultation with my GP. Now that's what I call service. And at the point of delivery, it cost me nothing. Of course I and my employers have contributed over the years. But it's worth it. That's the National Health Service. The practice, by the way, is Newbury Street Wantage.

I gather that one of tabloids had a leader comment today which started: "With dreary predictability, GPs’ leaders have raised objections to David Cameron’s hugely welcome plan to restore that most basic mark of a civilised society – the right to see a family doctor at any time, morning to evening, seven days a week...." Besides being transparently part of a policy of squeezing small practices out of existence - surely The Daily Mail looks back further than ten years to the golden days when one- and two-man practices were the norm? - , I reflected my elderly in-laws' experience over the past fortnight. Their sizeable GP practice lists 111 as its out-of-hours number. My mother-in-law has had resort to it three times in the past fortnight, and according to her the service has been excellent. It sounds as though it was in every way - keeping her informed, the doctors visiting, the follow-up and the quick coordinating with their GP. I recall receiving a visit from a lovely emergency doctor a few years back on Christmas Day. The system works now. I can see no way in which Mr Cameron's plan will not soak up any new money he offers - and more. Thus we shall end up with fewer resources spread more thinly, and worn-out doctors with even less time to spend with each patient.

As veteran Harry Smith ended, "Mr Cameron, keep your mitts off my NHS!" And that applies to all of you meddling politicians. Keep your mitts off our health service - and our education service.

PS I'm told I should have mentioned how nice our practice nurses are. They are very good. My second jab was quite pain free.

On a personal note

I'm sure I'm not alone among people with MND in being amazingly grateful on a significant day which after diagnosis I'd never expected to see. Our 40th wedding anniversary, which we celebrated a week ago, was one of those big days. All our family made it home for the big day. When we returned from church, there was a brand new pergola built in the garden awaiting us, with a rose and honeysuckle to go with it. A celebratory lunch with a rather fine wine followed.  

The week continued with a cream tea on Monday, a barbecue on Wednesday, and going to the ballet in London on Saturday. The last proved quite an adventure as we hadn't factored in an anti-Israel demonstration (no comment) which closed off all the roads from the A4 (which we were on) to Theatreland and created a tailback all the way to the Hammersmith Flyover (5 miles from our destination). Our satnav gave up the struggle, wanting us to continue the way we were heading, and so, with an hour and a half in hand, we made for the south - only to find Putney Bridge closed for repairs! 

The long and the short of it is, having crossed south of the river, we made reasonable progress and arrived at The Coliseum a mere half hour late! There, at last, we found ourselves treated wonderfully well, whisked into a box in time to see the tail end of Act 1 and all of Acts 2 and 3 of Coppélia, which was great fun and lovely music. I must say that the staff at the theatre were consideration personified - and the facilities first-class. The ballet's going on tour in the autumn (the English National Ballet) and, if that's your sort of thing, I recommend it. It's a very optimistic production, beautifully but not fussily danced.

One more recommendation if you're looking for somewhere to eat in the Trafalgar Square area, try the St Martin's Crypt - accessible, atmospheric, reasonably priced and not too crowded. Our good friends from Wimbledon took us there after the performance.

And in case you're wondering, the journey home was a breeze - well, for me. Jane of course was driving, and I have to say she's a match for any London cabby!