Meeting Tony

I first heard of Tony Nicklinson when Radio 5 Live's Victoria Derbyshire Show came from his home last year. He was campaigning for a change in the law to protect from prosecution someone assisting a person unable themselves to commit suicide. He himself had a massive stroke six or seven years ago which has left him in a "locked-in state". It's a wretched condition. He's totally paralysed, except for his head. He communicates via a computer which he operates by the blink of an eyelid. He has carers to get him up and in the evening, as well as an all-night carer. He lives in a nice bungalow home with his wife, Jane, and one of his two daughters. Even so it's not much of a life, and one can understand his wanting out.

As you'll have gathered, we were meeting as part of a projected BBC Inside Out West programme for October. The BBC obviously thought that getting two crocks with opposite views about ending life would make good TV, and so Jane and I agreed to go over yesterday to his home in Melksham in order to be filmed in discussion, or "debate" as Tony preferred to call it. It was bright and sunny, the wheat and barley fields beginning to turn to gold as we drove across the Downs - the best of English summer days. Then it was along the motorway and down the A350. Jane timed it perfectly, drawing up on the dot of 11 o'clock. There was Kirsty's Ka and, presumably, the cameraman's VW estate. The house was obvious, with its ramp and extension. Outside was a skip full of builders' rubbish. Kirsty, the producer, popped out as we arrived, radio mike in hand. So once I was installed in my wheelchair and wired up, Steve the cameraman took over, and we had all the rigmarole of meeting and then pretending to meet Tony and Jane - knocking, "Oh hello, nice to meet you etc...."

Then it was into the sitting room for the real business. By the time we had two wheelchairs, Tony's flatscreen computer with its stand, and the camera and sound boom in there wasn't room to swing a mouse, let alone a cat. In the end we were ready for the conversation. It transpired that Tony and I were going to be left to get on with it. The format was basically him putting questions to me and my answering. It was a slow process as he had to type his questions blink by blink on to the computer, which then spoke to me, and I then answered, which isn't itself a fast process. He asked me if I wanted the law on suicide changed, to which my answer was No, because I don't want the taking of life to be sanctioned in any form. Was that because of my religion? Probably. My faith affects my whole life, but it's not the only reason. There are other factors why I think it's a dangerous idea. And so we went on.

I suppose the nub of the argument was his insistence of having the choice, which he reckoned I still had and he certainly doesn't. Afterwards I reflected that, in fact, I would be physically very hard pushed to commit suicide, even if I wished to, which I don't. He feels it's a matter of equality, that those who are physically incapable are discriminated against by that fact. He'd produced a "scheme" which, he reckons, would afford immunity to those who helped people like him die. I felt that "my choice" can't trump all other considerations. Our choices have consequences for other people. "No man is an island". My main point was that once we open the door to allow the taking of human life in any circumstances it sets a precedent. At one point I asked him about the good things in his life - which, unsurprisingly, he couldn't see. I was fairly convinced that there were some. I felt we were really talking at that point, not just debating. I hope that survives the final editing.

Not Steve our cameraman, but you get the idea
of the size of the camera

Because, evidently, there is much more material on tape than can be used in a 10-minute programme. I guess we were filmed for getting for a couple of hours, as well as the filming that Kirsty has done before with us and Tony's wife Jane. We eventually called a halt to the filming, partly because the poor cameraman was wilting (with the camera on his shoulder the whole time), partly because we were beginning to go round in circles, and partly because I felt tired. And so we parted. And hoped to keep in touch.

We decided to do something entirely different on the way home - and so we did. We stopped at Morrisons' Chippenham store, made use of their facilities and had some lunch in their café. Not exactly haute cuisine, or even, to be honest, moyenne, but rather refreshing ambience and very sympathique staff. It was fine. Suitably fortified, we made for the motorway, the hills and home. Thank you, those of you who remembered us. It makes a difference.

Friends' photos

I think this might become my new Facebook status! We were given these rather special dates by Mandy when she came to our Friday supper group with Charles, and good old Pete and Jane. These evenings are nourishing to my soul. We talk, and read and enjoy God's company. Of course it was the title that appealed to me, but the dates themselves are something else!

And here's another photo that appealed to me. I was sent it by Nic who lives near Cambridge. On the left is the office of the church they go to in St Ives, called The Bridge - and on the right is the name of my late distinguished father. In fact it's the premises of a firm of precision engineers who, I think, specialise in making instrumentation - nothing to do with theology.

And lastly the pièce de résistance - we saw this book for the first time a week ago on Saturday, when we  called in on its editor, our pal John Milnes. It is a magnificent book, as Jane said, a real work of art. The Ashmolean in Oxford has a small but priceless collection of instruments, and John, himself an instrument maker and repairer, has assembled the country's foremost experts to describe them and the world's best photographer of instruments to capture them. The result is a thing of beauty. The Deluxe edition is already sold out, but you can still buy the standard edition for £280, http://ashmoleaninstruments.com/! I think the cover photo is of the prize violin of the collection, "Le Messie" Stradivarius, which John told us is the best preserved original Strad in the world. Inside there are photos from every angle in the best possible lighting. I think Le Messie means the Messiah rather than Lionel Messi, the star of FC Barcelona. It's just the star of 18th century Cremona. I suspect the violin will still be admired long after the footballer's forgotten.

Filming again

While the News of the World was being unmasked as the lowest form of tabloid newspaper (though squeaky clean now, as News Corp would have us believe, to the background noise of shredders and disc-wipers), we saw on TV reports of a monumental tragedy beginning to unfold once again in the Horn of Africa. This is how the Disaster Emergencies Committee described it:

DEC Chief Executive Brendan Gormley said: “Slowly but surely, these people have seen their lives fall apart – crops, livestock and now their homes have been taken by the drought. They’ve been left with no alternative but to seek shelter and life-saving help elsewhere. We have a duty to help quickly before the situation spirals out of control.” 
                                                
Large areas of Kenya, Somalia, Ethiopia are affected and the DEC appeal will also include South Sudan – set to become the world’s newest country on July 9.


More than 1,300 people a day, the majority of them children, are arriving in the Dadaab refugee camp in eastern Kenya near the border with Somalia.

The Dadaab camp was already the world’s largest refugee camp with a population of 350,000 – larger than the city of Leicester.


“Of course these people need a long-term solution with investment and political will – but right now it’s about preventing a tragedy,” said Mr Gormley."Many of these are a forgotten people, caught in the midst of conflict in Somalia and an ever-worsening environmental crisis.”  

Against the background of the one sordid and the other shocking news stories, I'm reluctant to blog about the mundane events of my life. I feel like one of those "petty men" whom Cassius described. Come to think of it, he could have been talking about Rupert Murdoch, couldn't he? Picture Ed Miliband as Cassius and David Cameron as Brutus, in PMQs:

Artist's impression of the Colossus
of Rhodes

"Why, man, he doth bestride the narrow world
Like a Colossus; and we petty men
Walk under his huge legs, and peep about
To find ourselves dishonourable graves.
Men at some time are masters of the fates:
The fault, dear Brutus, is not in our stars,
But in ourselves, that we are underlings." The interesting question is whether any of our politicians is willing to sever their links with the Colossus, and inflict "the unkindest cut of all". Of course their problem is what happened to Brutus and Cassius!

And, by the way, there was a good and thoughtful comment in Friday Night Theology headlined "How can I plan a holiday, now I know about this tragedy?" Helpful and worth a read.

However, I'm not a political blogger (much!), so back to my week. It's been busy, but my big event was being interviewed and filmed by Kirsty Hemming from BBC West. She's a producer for Inside Out West and is working on a programme to go out in the autumn at about the time Lord Falconer's "commission" brings out its "conclusions". She came here to see us on Thursday. She was very nice - but then good interviewers are! They need to set you at your ease.

Well, she interviewed me in the conservatory for about half an hour, and then we took her to have lunch at my favourite coffee shop, Cornerstone, where she did a bit more filming. In the event very little of the tape will appear in the final programme, of course. Editing is the creative part of filming, which of course allows the editor to put a slant on the film. I suspect, however, that Kirsty will maintain a fair balance. On Monday we're off for another session of filming, with Tony Nicklinson, who has locked-in syndrome and wants the law on ending your life to be changed. He has to communicate using his computer. The idea is for us to discuss the pros and cons. I suspect that won't be easy in any way. But I hope we get on all right.

A medical day

"You're having a very medical day," Jane told me on Monday. It was true: Lesley, my physio, was round in the morning for her regular check-up. I reckon she and Jane are part of the reason that my condition has not deteriorated more, them and the fact that it's that rare beast PLS - and a lot of people praying. She tells me my main problem is tightness in my adductor muscles and shortness in my hamstrings. She came up with a canny antidote to the former, which is sitting with a tightly rolled up sleeping bag between my knees - which forces them to stay apart. There's no hope of me becoming bow-legged like my revered Clifton art teacher, "Fluffy" (because of his hair) Leadbetter. He was the scourge of any cyclists who dared ride past the teaching block which housed the art school on its second floor. You were meant to get off at the gate but it was a long way to the bike sheds.... So it was tempting to risk it and stay on your bike, or at least scoot, round the corner! However, if Fluffy was in his lair, woe betide you! You'd hear a Scottish roar from on high, rooting you to the spot, followed by a thundering descent down the metal fire escape at the end of the building. I don't recall what the sanction was, but the ensuing encounter was terrifying enough.

As I say, I won't ever have knees you could fly a spitfire through, but the adductors might stop tightening. The consultant has warned/encouraged me that Jane and I probably have a long haul ahead of us; so everything that keeps me flexible is welcome. So are gizmos that make life easier - which is why my second visitor came. It was Martin from the Oxford Centre of Enablement. He came to talk about environmental control systems, i.e. technology to assist with daily living - like controlling the TV, turning lights on and off, closing curtains, summoning the lift, answering the phone and opening the door. The major need of those for me at the moment is answering and opening the door, because on the whole Jane and I have worked out a satisfactory modus operandi, which means I get on fine when she's out for some hours. However, the MND Centre tries to keep ahead of patients' deterioration, which is usually very fast. It's therefore normally hard to keep up. The system we talked about could be controlled from an iPad or iPod Touch - which was nifty - but I think had a few snags, like needing someone from the company to come and reprogramme things when you wanted to change something. So we're thinking on it. But it's another great service from the NHS.

Sadly I'm going to have to avail myself of the Health Service yet again, because, in the middle of lunch, eating a slice of home-baked bread and cheese, another tooth decided it had had enough and lost its head, i.e. the top fell off. So in a couple of weeks it's back to my nice dentist. One of my family, who's not with the NHS, is in the middle of root-canal treatment, at the cost of £450.

And of course that was like the big story of the day, the publication of the report of the Dilnot Commission. I've not read it through as I'd like to, but I gather it's factually and economically highly literate and its conclusions seem to me, at least, fair and affordable, protecting 2/3 of oldies' capital against care costs and adding no more than 1/400th GDP to public spending. As Andrew said, 'If we're not willing to spend that on caring for our elderly and younger vulnerable people, what does that say about our society?' - only more eloquently than that. Two things struck me about the news coverage of the report: one was the extraordinary authority that Andrew showed in interviews and debates. He knew it was a good report, based on sound principles. He knew he had a good "product". The other was the almost universal welcome the report received, especially from charities representing interested parties, but also from politicians (though naturally government ministers wanted a bit of wriggle room, promising us a white paper "in the spring"). The one dissenting voice I heard was from a Dr Patrick Nolan (if I remember right), an economist from the right-wing think-tank, Reform, on Channel 4, who waffled about affordability in financially straitened times, ignoring the facts that we'd spend less on it than on the Libyan expedition and that its implementation would not happen before our hoped-for economic recovery. In my view, the Commission was a job well done.

A plaudit and postscripts

If for nothing else, one has to give Mr Cameron and his government credit for tackling some of the hottest potatoes that have been cooking for decades, like the pensions problem, the benefit system and the social care time-bomb, and of course end of life care. You may not agree with their exact approach to dealing with the financial crisis (I don't think I do), but without doubt they haven't ducked the task of deficit reduction. Of course commissioning reports isn't the same as tackling the problems. I suppose the acid test will be the extent to which they act on the various reports they've received. Will they follow them up as rigorously as they've laid in to cutting public expenditure? There is naturally a lot of political debate ahead, but I honestly hope that, while he listens, Mr Cameron isn't persuaded to let the grass grow up around these issues yet again.

I'm sad to learn that the Witney Town Council has not allowed the charity LIFE to hold a rally to celebrate its 40th anniversary in the Leys. There's been a bit of a hoo-ha about it, as you can discover in the delightfully reactionary Archbishop Cranmer's blog.

In what I hope will be my last word on Terry Pratchett's BBC programme about "Dingitas", I was a bit shocked to be alerted on Facebook to a news item in the Daily Mail. I did describe the programme as "creative" in the Guardian, but I hadn't realised just how creative it had been. The death of the young man with MS, Andrew Colgan, wasn't shown. What we did see was Sir Terry and his assistant back at their hotel playing Elgar's Nimrod variation and toasting him at the moment of his dying. In What the BBC didn't reveal his brother tells how his dying took 90 rather than the usual 20 minutes to take place.
"My mother cuddled him for the first 40 minutes but she was advised to let him go because knowing she was there may have caused him to cling to life. She did so with tears in her eyes."  The implication would seem to be that either Sir Terry was toasting his brave demise prematurely, or that the filming was - well - creative. Whichever, the BBC were, let's say, selective with the truth, as the impression was given of a normal Dignitas "dignified" death.

Good morning!

When Jane pulled back the curtains this morning, I looked out on a clear blue sky and the houses over the road lit up by sunshine.

When I turned on the radio, there was an item about the report on end of life care provision by the CEO of Marie Curie Cancer Care, Thomas Hughes-Hallett. He was talking about it at 7.10, and then, an hour later, there was a discussion about it with Care Services Minister, Paul Burstow, and the palliative care consultant at St Thomas' and Guy's hospitals, Rob George, introduced by a clip of Tony Bonser, describing his son, Neil's death at his home, "He died peacefully, where he wanted to be" - thanks to a Macmillan nurse's intervention, asking the right question at the right time. It was a brilliant example of how dying can be managed well - so different from the many scare stories that are peddled too often. You can hear it half way down this article. The report seems to be saying that more widely available palliative care at home and in hospices would actually save on hospital budgets and therefore not cost the NHS more. Refreshingly, the minister welcomed the government-commissioned report without reservation; unsurprisingly he wouldn't be acting on it straightaway - examining implications, pilot projects etc. But it was good to hear something really positive about end of life care.

Perhaps the most encouraging point in the Today programme was the very end when John Humphrys said: "Just before we close, we've had a huge response to our item on palliative care, the care of people who are dying... very warm praise from an awful lot of listeners for Tony Bonser who spoke so passionately and with such dignity about the death of his own son, who was terrified of hospitals and did eventually, in fact, die at home. One email in particular caught our attention, Marian Nash whose father died just on Sunday. She arrived at the care home just as they were calling the ambulance, even though he would not have wanted to go to the hospital, and in the end she says, 'she fought her corner' and he died at home. She says he had a beautiful death surrounded by two of his children and with his favourite music playing in the background. 'I dread to think what his end would have been in hospital.' And that's what so many people have been saying. And every single email we've had,... from people who've had experience of hospices , says how wonderful they have been and how great care workers have been at home." Maybe the BBC is learning to give the silent majority its voice - or maybe the silent majority is finding its voice.

That wasn't all. The Chief Rabbi, Jonathan Sacks, a good argument for Judaism, was giving Thought for the Day. He was reflecting on the prevailing mood of pessimism and on actually how blessed we are. We may be preoccupied with cut-backs and pensions, but in a global and historical perspective (he mentioned his parents and grandparents who, I guess, were in mid 20th century Europe) "The lot has fallen to me in a pleasant place," he quoted from the Psalms, "I have a goodly heritage." Amen, that's true.

A couple of hours later I was reminded of the Burmese pro-democracy leader, Aung San Suu Kyi, who gave the first of this year's Reith lectures on Tuesday morning. What a brave woman! 21 years under house arrest, refusing to leave Burma for fear of not being let back in - even at the cost of seeing her two sons and not being able to see her dying husband. We take so much for granted, and we gripe about such insignificant things. 

What the doctors think

The British Medical Association is holding its annual representatives' meeting in Cardiff this week. This morning they discussed Motion 305

"That this Meeting:-

i) notes that the significant majority of members of Lord Falconer’s Commission on Assisted Dying are publically in favour of assisted suicide and euthanasia;
ii) supports the BMA’s stance in not giving evidence to the DEMOS Commission on Assisted Dying;
iii) questions the stated impartiality and independence of the Commission on Assisted Dying;
iv) requests the BMA Ethics Committee to make the Association’s opposition to assisted suicide and euthanasia clear to the Commission on Assisted Dying;
v) requests the BMJ editorial team to present a balanced and unbiased coverage of the Commission on Assisted Dying."

All five parts were passed by a clear majority on a show of hands. It seems I'm not alone in my opinion of the Falconer "commission". Next week I'm due to try to explain my reasons to BBC TV West. Peter Saunder's blog will give you a full account of the background and implications.

You'll be surprised, perhaps, to know that the BBC haven't yet reported this, though they did headline the doctors' opposition to changing the clocks to double summertime. I probably don't need to comment further.

In order to be even-handed though, I did think that Evan Davis on the Today Programme give Cabinet Minister, Francis Maude, an appropriately rigorous cross-examination about public service pensions (2 hrs 11 min in), pointing out that the annual cost of them was set to decrease by 25% in the next few decades. The minister seemed not to have been as well briefed as he might have been.