Tuesday, 25 August 2015

Assing about in Devon

For a change, something a bit lighter - but not less important for all that, since such times take on a special significance when you have a chronic deteriorating condition.

Last week we returned from a week away with all our family. They're all busy people; in fact one of them is in the throes of completing his master's dissertation. So their giving up a week of the year to spend in the company of Jane and me means a lot. Not that we don't have fun together, but a wheelchair grouch imposes limits on what can be done.

We stayed in a large house in mid-Devon which Jane had found through the New Wine magazine. It was in reach of her parents and so we were able to call on them - which the great grandchildren enjoyed. The weather was of course mixed - but never bad enough to prevent us doing what we wanted. Not far away was Dunkeswell Airfield from where on the Saturday a continuous stream of sky-divers flew and gave us a grandstand display of their descents against a clear blue sky and even out of the clouds.

On the Monday we drove to the National Trust house at Knightshayes Court, once owned by the Heathcoat-Amory family. Our granddaughters dressed up as below-stairs servants. In the magnificent billiard room there was a series of corbels depicting fables. Near the door was this one:

Not a fable I'm familiar with, but it seems to refer to this one from the Latin writer, Phaedrus. "A donkey saw a lyre lying in a field. He approached the instrument and as he tried to strum it with his hoof, the strings resounded at his touch. 'What a beautiful thing,' said the donkey, 'but completely inappropriate, since I don't know anything about music. If only someone better equipped than myself had found it, my ears would have been delighted by heavenly melodies!'" 
So it is that talents often go to waste because of some misfortun(trans. Laura Gibbs). Sort of apt!

The next day we continued with the theme of donkeys, and visited the vastly over-endowed Sidmouth Donkey Sanctuary. Suppressing my reservations about how much money is donated to animal charities, I enjoyed the morning. It is free to get into and has pretty good wheelchair access (and posh disabled loos). An excessive number of photos were taken of the old ass with the sleek-looking donkeys. 
Looking at my stomach explains the notice!
Silent fellowship of asses
And of more importance the girls didn't seem to tire of  viewing the unexpected variety of donkeys. Then we had the exclusive use of Blackbury Camp for our picnic.
Under the greenwood tree

I mustn't forget to mention the two discoveries of our holiday. The first is the excellent Ashill Inn. Last year we went to have our final meal at Clyst Hydon's Five Bells. Now it's a bit out of our price bracket; and so we were delighted to find somewhere which suited us just as well and served excellent food. It's not stodgy pre-cooked microwaved pub grub, but a freshly cooked, locally sourced, delicious menu. Good wine list and local beers, I'm told.
At Ashill Inn
The game of Mölkky

The other is the game of Mölkky, to which one of our family introduced us. It's from Finland and it's a sort of sophisticated and longer version of skittles, but with the mölkky thrown rather than rolled. All generations could take part. Sadly my lack of coordination and muscle power meant I scored nothing when I played, but that didn't stop me enjoying it.

Life is good.

Friday, 21 August 2015

The letter The Guardian didn't print

A week ago, when I was away on a much-needed break with my family, the media, led by The Sun, was full of the case of Mr Bob Cole, a councillor from North Wales, who was due to commit suicide on the Friday afternoon in the "Dignitas" self-styled clinic in Zurich. It was clearly a media-event  pre-orchestrated by the pro-euthanasia lobby in this country. ITV had contacted me for an interview on the Thursday, but I wasn't then well enough to oblige. So I did the next best thing I could and sent a letter to The Guardian newspaper, before we left on holiday.

This was what I wrote:

Sir

I am sad to learn that The Sun has lent its megaphone in support of what appears to be the latest salvo in Dignity in Dying’s campaign to legalise assisted suicide.  No one can fail to be moved by Mr Cole’s suffering nor that of his late wife.  However the campaign threatens to open a Pandora’s box of unintended and dangerous consequences for those of us who suffer from chronic, terminal or disabling conditions – and indeed ultimately for our whole society.

Mr Cole is quoted as having “no wish to die in pain without any dignity”.  Neither do I.  I have a very slow form of MND, and although I don’t relish the prospect of dying I have confidence that my dignity will not be sacrificed and my symptoms will be well managed, thanks to advanced palliative care pioneered by the hospice movement.  Ironically, in our sophisticated culture, the populist campaign is based on an immature fear of the process of dying.  Rarely is that process easy, and as our population ages so the difficulties increase.  However short-circuiting the process, which is what Dignitas and assisted suicide offer, merely adds to fear and militates against acceptance of the inevitable, and good dying.  Deliberately ending life, also known as killing, is no way to go.  Expanding and investing in palliative care, which is real compassion, is the better way.  

The vast majority of disabled and vulnerable people are protected by the law as it stands, and fear any change.  To pass a law which admits that some lives are less valuable or worthy of protection, as has happened wherever euthanasia or assisted suicide have been made legal, is a thoroughly dangerous precedent.  I trust MPs resist the loud siren-call of press magnates and listen to the voice of informed reason.  Keep us safe.

Yours etc

Sadly, The Guardian, whilst making quite a thing of the event, chose not to print my response the next day. I am sorry because I think that opinion formers such as journalists and law makers such as MPs need to be made aware that euthanasia is not a good universally acknowledged - anything but.

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. (In Switzerland doctors aren't allowed to do the actual deed.) 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 was taking 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
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!