Wednesday, 22 July 2015

Euthanasia - there is a better way

I talked to a professional carer a few weeks ago. She had been caring for someone with terminal cancer to the end. After that she had been on holiday, and had met another carer, a nurse, who'd worked in Switzerland, where assisted suicide is legalised. He too had been caring for a cancer patient. The doctor had prescribed lethal drugs for his patient but would not administer them. (Perhaps doctors' ethics prevented him.) But the nurse was compelled to do it, although it ran counter to his conscience. I presume the patient had requested it.

However the effect on the nurse had been catastrophic. Can you imagine being forced to kill someone when your whole conscience and all your convictions forbade the taking of life? How would you live with yourself? The answer for that nurse was to abandon his vocation and to drown his guilt in a cocktail of drink and drugs. It had taken him a long time to rehabilitate himself, and the scars and nightmares will never leave him, I imagine.

Such is one seldom considered effect of legalising assisted suicide. There are always others involved. There is always some impact on their psyches. It might inure them to the event - which cannot be desirable. Or it might scar them as it did that French nurse.

A Labour MP, Rob Marris, has tabled a private member's bill in the House of Commons for 11th September after MPs return from holiday. It's basically the same old bill that Lord Falconer tried to introduce in the Lords last year, and will be fraught with the same old dangers which have restrained our legislators wisely from going down the same route as Switzerland, Belgium, Holland and a handful of US states. Open the door to "assisting" others to die and you open a Pandora's box of unforeseen consequences. My local MP rightly pointed out that, in Britain, we lead the world in palliative care. Our response to the physical and emotional pain of terminal illness must be to show compassion by extending and developing this further - not by letting people die when they most need encouragement and assistance to live. As evidence from other countries has shown, a right to die would for many be a duty to die. I hope other MPs will also fiercely resist this Bill for that reason.

There is a better way.

Being present at someone's deathbed is always momentous, but usually it is a necessary and healing part of grieving. It can't be that if one is contributing to the death. But if one is there accompanying the dying person and sharing in their struggle to depart, there is no guilt in the memory, only a sense of a compassionate task well completed.

Two of my great friends have died within the last ten days. They were both men of faith. One died in a hospice and the other died at home. The passing to new life is never easy. It wasn't for them either, but it was peaceful. I suppose the body is very attached to physical life. Matt Redman's song Bless the Lord, O my soul was being sung as one friend died and will be sung at the other friend's funeral:
"Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name.

And on that day
When my strength is failing
The end draws near
And my time has come
Still my soul will
Sing Your praise unending
Ten thousand years
And then forevermore

Whether you have faith, as my friends had, or not, a "natural death" is better than an unnatural one. Hard, but free of the dangers and peculiar consequences which accompany the intentional shortening of life. 

Saturday, 27 June 2015

A night out in Oxford As You Like It

Last night Jane and I enjoyed an evening out in Oxford. We had gone to see  one of my favourite plays, As You Like It. It was an open-air production in the courtyard of Oxford Castle, with a small company and minimal props. However, it was a clear night and the moon rose behind the castle keep, providing whatever might have been lacking in atmospheric scenery.

In case you don't know, the plot is as satisfactorily convoluted as any Shakespeare comedy, involving a usurping duke banishing his more likeable brother from court into the Forest of Arden, where other courtiers including Rosalind, the bad duke's niece, and her best friend, Celia, his daughter, and Orlando, Rosalind's would-be boyfriend, also end up.... The two women are the heart of the play (with Rosalind having the most lines of a female character in Shakespeare) and they were last night. The last time we saw As You Like It was at Stratford in the RSC production which starred Pippa Nixon as an outstanding Rosalind in 2013. She displayed all the emotional complexities of her character. So it's perhaps unfair of me to compare Laura O'Mahony's winsome and lively portrayal with such a stellar performance. Of course it did not quite match. But Abigail Preece's Celia was, to my mind, as intelligent and interesting as Joanna Horton's at the RSC - a lovely performance. This Rosalind and Celia were equally convincing bosom pals.
Photo from GB Theatre

There were some production details with which  I was not comfortable. The major one was to exchange Duchesses for Dukes (both played by the versatile Clare Denton). Although the director, Edward Blagrove, explained it as one holding on to power "in a masculine way" while "the other offers an open and sharing world in her feminine guise", it somehow did not convince me. A major element of the play is how Rosalind proves herself ultimately more effective than all the men - hence Shakespeare gives her the epilogue. To replace them with a woman took away a visual symbol, and theatre is both verbal and visual. The result is that this Rosalind is made to appear somewhat light-weight. Another niggle for me was the caricature that was made of Sir Oliver, the priest. It was one of those outdated annoying TV portrayals (like Derek Nimmo in All Gas and Gaiters) which goes for cheap laughs. The play does not call for it.
BMH production of Macbeth at the castle

However, my reservations cannot detract from what was a thoroughly enjoyable evening by a talented small company of actors. (Watch out for Wayne Browne as Touchstone's bit of audience involvement!) It runs until 4th July and on the night we saw it there was still room for more audience, even though it's an intimate venue. If you've never seen the play - and even if you have, of course! - , I recommend making the trip. The weather forecast is good next week! The details are here.

Saturday, 20 June 2015

The Oxford MND Centre

I've often referred to our excellent MND Care Centre in Oxford. It's based in the West Wing of the JR Hospital and the Centre of Enablement at the Nuffield. About a month ago I had my annual check-up there, seeing both the consultant, Professor Kevin Talbot, and the OT, Jenny Rolfe. The beauty of the place is its humanity and its flexibility. Once you're signed in, you're met by a real person, rather like cabin crew on a plane, but it's someone who has first-hand experience in caring for a person with MND, and they keep you informed about who you are going to see, how long you might have to wait (usually not long), who you'll see next and so on. It's so much better than the impersonal announcement over a tannoy or that annoying digital pinging display summoning you to a consulting room. The MND Centre's air hostesses are all volunteers - so valuable.

Mark Stone in the sort of wheelchair I hope to get
Anyway there are two points to this story. One is that talking to Jenny about fitting hoists to get electric wheelchairs into the boot of our car, she was anxious for me not to have an unsuitable hand-me-on chair and recommended a proper neuro-wheelchair with a folding back, which are now being made. She subsequently came out with an engineer to show me the possibilities. I'm now in the process of choosing and looking forward to Jane not having to lug my manual wheelchair in and out - and not having to push me whenever we're away from home.

The cyclists with the reception party outside the hospital (Photos: Lesley Ogden)

The other point is that we then learned about the sponsored cycle ride being done by the Centre's nurse, Rachael, the two consultants and a physio. They started off from the MNDA headquarters in Northampton and went via the centres in Milton Keynes, Aylesbury, Reading, Swindon ending in Oxford - a total of 170 miles, including a gruelling section along the ancient drovers' road, the Ridgeway. Since we'd been the recipients of a generous gift of tickets to Wimbledon, we felt the least we could do was to sponsor them - apart from the fact that we are continually grateful for the care I receive from the MNDA and the NHS. So far they have exceeded their target but just in case here's the Just Giving link. In fact we joined a group to welcome them back at Sunday lunchtime in front of the JR's West Wing. Quite an achievement! And they'd be back in clinic the next day. "Dedication is what you need," as Mr Akabusi used to say.

Wednesday, 27 May 2015

A different bank holiday

Apologies if you're having problems with the photos. I'm not sure what the problem is. (If anyone can tell me, I'd be grateful. Maybe there are too many MBs.)

Yesterday my lovely NHS dentist asked if I'd done anything nice for the bank holiday. As it happened we had - maybe not as exciting as camping, but on my scale of activities above the 50% mark. We'd been to see the Art Week exhibition at the recently opened Sylva Wood Centre, just outside Long Wittenham, not far from here.
The OneOak project

We'd heard about it from our carpenter pal, Pete Beckley, as well as from Mary Blaxland who reupholstered our dining-room chairs for us. She has a start-up workshop there, and Pete was showing some of his artefacts there. Sylva describes itself as a charity working to revive Britain's wood culture. "Sylva works across Britain caring for forests, to ensure they thrive for people and for nature, and supporting innovation in home-grown wood."

Set next to huge rusting barns, the Wood Centre is quite a contrast, particularly inside. When we arrived, we were delighted to find Mary there, talking to a couple of friends. Here are some of the photos I took when we were there which give more of an impression of the variety and originality of a lot of the woodwork there.
One of Mary's Chairs

Before Mary's treatment

In her workshop


Pete Beckley's Jubile table marking the abolition of slavery
Neil Scott with his beautiful work station

Some of Pete's smaller pieces

Simon Clements woodcarving in his workshop
Simon Clements' amazing Crown of Thorns -
and yes, it's all carved from wood.

Jane in wonderland

So after a rather inspiring morning we drove down the road to Neptune Wood, where Jane used to take the late lamented Jess for walks, and had our picnic, before returning home through Oxfordshire lanes fringed with Queen Anne's lace, the old romantic name for Cow Parsley.

Saturday, 23 May 2015

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 be such a good idea!

Wednesday, 25 February 2015

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 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!) 

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!

Thursday, 19 February 2015

Grim reaping

There's an expression, isn't there, about sowing the wind and reaping the whirlwind? I fear we are seeing its truth in the world today.

The West (and yes, I suppose I mean our government and its allies, encouraged by public compliance) has persisted in presuming to know what's best for other sovereign nations, especially but not exclusively in the Middle East. Parties of both the left and the right have waded in where angels fear to tread. And so in our name the government launched a war (with our big American brother) on Saddam Hussain's Iraq; then we encouraged the Syrian rebels to rise against President Bashar al-Assad and provided air-cover for the rising against President Muammar Gaddafi of Libya. Well, it seemed like a good idea at the time.... Well, I'm not so sure it does now. Now IS is carrying on its bloody business not so far from Europe in the chaos that is Libya. The trouble is, as Egypt's president said, is that we leave unfinished business - which extreme jihadists willingly complete, with dreadful results.

We do have a fanatical belief in Westminster-style democracy as the fit-all for every political situation. It's arguably the least worst model, but it's clearly far from perfect. Shakespeare shared the Elizabethan fear of usurping the throne from the monarch. It was like dethroning the sun from the sky. It's a tradition which went back centuries. Respecting the emperor was something Paul enjoined on the early Christians, even though Roman emperors were as corrupt as the worst of modern dictators and not known for their benevolence towards the peaceful Jewish sect. The reason is what we read in the news every day - that, whenever you create a power vacuum, all sorts of contending forces come and try to fill it; and the ensuing chaos is hellish.

Even in Ukraine where we weighed in on the pro-European side the result is proving counterproductive, provoking the Russian bear and dividing a previously united nation. What is hard to understand is the lack of imagination of our policy-makers. One question should not be too hard for them to ask themselves, and that is this: "What would we, as the British people, feel if China or Saudi Arabia were to tell us how to run our country and then do all in their considerable power to bring about the change they prescribed?" No doubt what the answer would be.

Hopefully 2015 won't be the year of the whirlwind.