Thursday, 30 June 2011

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.



Wednesday, 29 June 2011

Thought for today

I was really struck by this comment today from a friend of mine with a nasty neurological condition: "I do not know all the answers but I personally look forward to the end, but I am quite happy to let God make that decision. My husband likes looking after me as do lots of people, and I would feel I would be kicking them in the teeth if I were to take away their choice." Now that's impressive selflessness.


For a view of the Dingitas factory different from the one we normally see, I recommend this article from the Mail, A daughter watches her mother die. Karen Royle talks about the devastating effects of her mother, Rona's assisted suicide. She had MND and wanted the quick exit for herself, but it left her husband  utterly lost and her family shattered. 'Compared with Mum, Dad had the better death, without a doubt,’ says Karen. 'Although his body was riddled with cancer, he died peacefully at home with us.'


You can see what my friend means.

Monday, 27 June 2011

Welsh reflections

When we arrived at Pen y Banc, I had mental energy for little else than sleeping, watching TV and thinking. I'm not a natural meditator, though clearly MND does force you to sit and stare, as the poet half-recommends.

So here are some reflections from last week.

Early (for me, i.e. 9.30 am) on Sunday we went to St Dingat's Church in Llandovery. Dingat I learn was one of the 36 offspring of Brychan, Irish chieftain and saint, of the sixth century. Well, there were a good deal more than 36 in the congregation. Just as we pulled up outside, a couple of minibuses from, I think, Coleg Elidyr, the local Camphill Residential Special Needs School, were disembarking their passengers. The service wasn't particularly inspiring, the music wasn't especially good, the liturgy was the same as ever, the sermon was comprehensible and straightforward (memorably telling us that academic scepticism about the Trinity was "a load of rubbish"). And yet it was probably the time when I have been most aware of the presence of the Holy Spirit in a church service. I was reflecting on why this should be so, and my conclusion was, "Inasmuch as you did it to one of the least of these my brothers and sisters, you did it unto me." The welcoming acceptance of those we tend to exclude from polite society was the reason for Jesus' presence. 


I recall listening the Dream Center's Youth Pastor speaking at Kingdom Faith in the mid '90s about the vision that led the Barnetts to that remarkable church in downtown Los Angeles. On the website it says, "The vision was birthed out of the fact that in 1994, Pastors Matthew and Tommy Barnett came to Los Angeles with the intention of building a church. They found that they first had to address the physical needs of this impoverished community." My memory is the vision was expressed in dialogue form: "Jesus, we want to build a church where you are present." The Lord, "Bring in the poor, the marginalised and the outcasts - I love their company and I'll be there." 


I've mentioned before the joys of the Beamer Tramper - the cross-country disabled buggy. We first came across it at Pembrey Country Park near Llanelli, and we went back there on Thursday. Blue-badge holders can book it free of charge. It allowed us to go for a really good walk together, which is a real treat. 


We made it up to the view point looking over to the Gower Peninsular, passing en route the hugest specimens of the blue wild flower, Viper's Bugloss, I've ever seen. From the wonders of nature to the perversity of humans. Once we were up there there was a puzzling spectacle below us. Men in orange visijackets and black and green bundles were spread out below us on the grass and dunes. As we came down we discovered more. It was the debris of a student event, we were told. 70 people had been working since Monday clearing up. They still had some way to go by the look of it. The ground had apparently been covered. 

When we reached the information centre, however, we were told it had been a good occasion. I gather it's not dissimilar to Glastonbury after the festival. Both fun and creative events, both leaving a lot of rubbish. I suppose there are some similarities in the natural world, such as vultures and dung beetles. We live in an interdependent world. But surely we can do a bit better than just abandoning our detritus indiscriminately behind us? We're not merely animals.


Sunday, 26 June 2011

Home sweet home

We're just back from a great week near Llandovery in mid-Camarthenshire. It's where we've been before - well off the beaten track, a single-storey building attached to a 200-year old Welsh farmhouse, with lovely views over the River Towy to the Black Mountain. Being Wales the joy of the view is that it constantly changes, sometimes shrouded in rain, sometimes stunningly clear, and of course changing with the time of day.







However what's best about Pen y Banc is the amazing garden which surrounds it, created by Kenneth and Gill over the past twenty years. I reckon it ranks in its small way with the best of the great gardens like Aberglasney nearby. Sadly I can't get round it, but Jane enjoys it and takes photos so that I can see what I'm missing! Here are some pictures.
And yet, in spite of everything, it's good to be home again - and that's not because I've missed the internet! Far from it! I can't imagine being at the beck and call of a bleeping Blackberry all day every day. What a nightmare! I think they should be called Brambles - you don't want to get caught up with one.

Saturday, 18 June 2011

WHO-ay!

We spent a very interesting afternoon yesterday with our curate. I was going to say he clearly keeps ungodly hours as he sent me a message when I'm tucked up and snoozing peacefully, but then I remembered that he's in church each morning to say Morning Prayer at 7.30. So I suspect it's me who keeps an ungodly timetable, and he's got the godly schedule! 
Anyway, he pointed me to the World Health Organisations Guidelines for Media Professionals Guidelines for Media Professionals on the portrayal and reporting of suicide, which ends: "There is an obligation on media professionals to exercise caution in reporting suicide, and to balance imperatives like the public’s ‘right to know’ against the risk of causing harm."
Its bullet point summary is:
Take the opportunity to educate the public about suicide 
Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems
Avoid prominent placement and undue repetition of stories about suicide
Avoid explicit description of the method used in a completed or attempted suicide
Avoid providing detailed information about the site of a completed or attempted suicide
Word headlines carefully 
Exercise caution in using photographs or video footage 
Take particular care in reporting celebrity suicides 
Show due consideration for people bereaved by suicide 
Provide information about where to seek help
Recognize that media professionals themselves may be affected by stories about suicide.
The report warns against the copycat danger of media reporting of suicide, which is well researched and accepted, especially with high profile stories. The WHO resource is well worth reading. I've no doubt that the BBC were aware of it; I'm sure Dignity in Dying (the old Voluntary Euthanasia Society) knows it very well. No doubt it's one reason they assiduously avoid the term "assisted suicide". But if Terry Pratchett: Choosing to Die on Monday made one thing clear, it was that we were watching a suicide, not the double-effect of pain relief administered by a doctor for a terminally ill patient near death.
On a brighter note, today we've heard that our great friends in Australia have had their first baby, a boy. Mum is disabled, but full of the joy of life. Congratulations! Happy Birthday, Jacob!

Thursday, 16 June 2011

The law of the jungle

Here I am sitting in Cornerstone (my favourite coffee shop), enjoying a peaceful cup of coffee. I've just put up on its Facebook page pictures taken at Tuesday's friendly AGM. And now I've noticed on Peter Saunders' blog that the BBC is putting out another programme this coming Tuesday about patients in a permanent vegetative state, and my heart sank, especially when I read how it's billed: "There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain"(Peter's italics). As Peter comments, the old specious euphemisms. (There was rather a witty Mac cartoon in The Telegraph on the subject.)


You can see the way the argument's running. This Monday it was, "Individuals should be allowed to choose when they die (only when their lives are unbearable, of course)." Next Tuesday it will be, "Oh yes, and did we forget to mention those who can't choose? Can we afford them? No. They're very expensive to keep. So let's put them down." The argument flows from choice to non-choice so easily, from patient's decision to family's wish so seductively. "Surely they have no quality of life?" You may remember this was something I touched on in Chapter 21 of I Choose Everything, "Compassion costs":


"With the discovery that we can have some form of communication with some patients in a persistent vegetative state (deep and long-lasting unconsciousness), one of the first questions journalists asked was whether that meant one could get an answer to the question, ‘Do you want to go on living?’ They expected, I think, to be told No, and that this would solve the dilemma of keeping comatose patients expensively alive, but the surprising truth they heard was that the vast majority of ‘locked-in’ patients (perhaps the nearest one can get to a conscious vegetative state) want to stay alive. Contrary to the account in the film, Jean-Dominique Bauby, who authored The Diving Bell and the Butterfly merely by a movement of an eyelid, did not ask for his life to be ended. Just down the road from where we once lived, in Stepping Hill Hospital is a 26-year old mother locked in her body, Michelle Wheatley, who steadfastly wants to live. There is, it seems, a deep-seated instinct to stay alive, and actually to keep alive. We don’t naturally stand and do nothing when someone tries to jump under a train. Something tells us that life is precious. We know it’s good to be alive, even when it’s hard. We value life, rightly."

Who's next? I wonder. The senile who can no longer express themselves at all? Can we afford their care costs? "No doubt they'd rather be dead." I'm sure the Radio 4 programme will have people claiming that ending the lives of deeply comatose patients is only compassionate. But I'm afraid it's not compassion. It's economics, and it's the law of the jungle, the survival of the fittest.  


I reflected on Monday on the irony of Choosing to Die immediately following Springwatch. The latter is presented by jolly, jocular personalities, full of the joys of spring and new life; the former by the saturnine Mr Pratchett, presiding with melancholy solemnity over death. Where's the link? I thought. Then I remembered the pictures of the young buzzards and barn owls who consumed their weaker siblings. "It's the way of things," Chris Packham explains in lugubrious tones. "They have to survive, when their normal food runs short or when the owls can't hunt because of the rain." It's the law of the jungle, but not the law of community. We don't live in the jungle - do we? Individualism brings death; community brings life. And the law of community is love.  
Compassion isn't feeling sorry for someone or yourself;
it's staying with them through their suffering to the very end.

Wednesday, 15 June 2011

Commission and omission

I wrote a red-hot post about the Terry Pratchett programme yesterday, and then thought I'd see if the Guardian might like it. And so I did, and they did. This was the result: Comment is free: Choosing to Die.

Did you know that today is World Elder Abuse Awareness Day? Funnily enough, it's not been mentioned on the BBC or in the media. I only discovered this from Peter Saunders' blog, which is excellent on medical ethics and policy. In his post today he writes: "It is often argued that legalising euthanasia or assisted suicide would be a recipe for elder abuse. Given the vulnerability of many older people, who already feel themselves to be a financial, emotional or care burden on others, this is a powerful reason for not changing the law. 
"There are too many people already who have an interest, financial or otherwise, in an older person’s death. Let’s not give them any encouragement. And let’s work to honour, protect and uphold the older members of our community." 
Dr Peter Saunders

Peter Saunders is one of our nation's doughtiest defenders of human life. What the media world prefers to forget he constantly reminds us of. He is often in the front line of contumely and personal animosity. For example, I listened to a rather shrill Margo MacDonald accusing him of scuppering her euthanasia bill in the Scottish Parliament on the Nolan programme on Sunday night, as part of the BBC's three-day Pratchett Fest.

The MNDA had asked if I'd like to participate in the discussion, but as I don't trust my voice under stress at that time of night, I instead sent this email, which Stephen Nolan read out. It said it better than I'd have been able to, and expressed the widespread feeling that the BBC is really not presenting a balanced viewpoint on matters of life and death:
"I have PLS (Primary Lateral Sclerosis), a rare form of MND. My prognosis is slow but inevitable. I'm not exactly looking forward to it, but neither am I frightened by it.  I understand you're discussing Terry Pratchett's TV programme broadcast tomorrow.

"As my voice is even more rubbish at this time of night than usual, I'm just emailing.

"Obviously I've not seen the programme, and so I can't comment on specifics.  But I'm concerned about it because it sounds as if it will be one-sided with a gesture towards another view. For one thing it's presented by Terry Pratchett whose views are well known after his Dimbleby lecture. He's known to be campaigning for the legalisation of assisted dying, or suicide.  And it's been widely trailed that it will show a death of someone with MND in the Dignitas facility in Zurich in favourable terms. This could be regarded as encouraging others to do the same.

"I understand that the BBC admits this is not an unbiased programme. I'm all for a debate on the subject, but I'd like to know if the BBC has plans for a programme presented by an opponent of legalising assisted suicide. Otherwise it seems it's not being impartial, which it surely should be.

"The large majority of disabled people in a recent Comres poll indicated they were opposed to legalising assisted dying. The reason is because we fear pressure being put on us as we are costly and less valuable ("a burden").  Were assisted suicide to be legalised, no doubt its proponents would argue under great safeguards, experience has shown in places like Holland that involuntary termination of life follows - and the reason seems to me that life is no longer considered inviolable. 

"Terry Pratchett's mantra is "My life, my death, my choice". The trouble is that my choice has consequences for others - health professionals, carers, the vulnerable and the rest of society. It's taken our society a long time to stop even the state taking life. I don't want to return to the days when life is ours for the taking."

Sunday, 12 June 2011

Commiserations - or celebrations

There's a great temptation if you have a degenerative condition to feel sorry for yourself. Or for your carer to feel sorry for him/herself, as usually they're your husband or wife. We were at two very different events on Saturday: one was an MNDA Coffee Morning across the village at our friends', John and Jean; the other was a ruby wedding lunch for some old friends, David and Margaret. You would have thought that the atmosphere was quite different in the morning and afternoon - one subdued and the other up-beat.

However not so. As well as friends and neighbours, there were four of us there who had MND at various points of progression, Jean herself, David the herb farmer, Maria the shopper, and me. Three of us were out in the garden, and, yes, we did talk about our frustrations and the lessons we'd learned, but it wasn't a moany sort of conversation. It was companionable, and at times jokey. One of us commented that she'd learned humility and patience; another that he'd learned impatience! I think we might have thinking about the same phenomenon: we've been discovering how impatient we are. I'm lucky as I'm the only one whose upper motor neurone disorder has so far left my hands and arms intact. But even that leaves me frustrated.

One of us talked about the dark times he experienced on occasions, but also of the enjoyment he derived from friends' visits. We could all identify with that. John and Jean's house was buzzing for two and a half hours, full of conversation and full of life - and in our corner with a lot of laughter.

So it wasn't all that different from the 40th wedding anniversary party on our friends' farm. Their best man and four bridesmaids were all there. Friends had come from both ends of the country. The marquee buzzed with conversation; the groom's speech was jokey and serious. And of course the food was excellent.

Life is for celebrating, not for moaning about. There's a very positive article by Geoff Morris, who has MS which you can read on line, about the depressing Terry Pratchett programme due to be shown tomorrow evening. I think he has seen a preview and knows what he's talking about. He describes it as a Saccharine picture of suicide. It raises the very real issue of whether the film encourages suicide - which is of course against the law, against the royal law of love, and against life which should be cherished as the most precious of gifts. And of course it raises the questions of what the BBC is up to showing it, and when it will show the opposite as a balance.

Friday Night Theology

I hope Marijke won't mind me reproducing this article from "Friday Night Theology", which I loved.

Shalom in the home

10 June 2011
Men sitting on a bench
Three years ago, my dad passed away following a long illness. He died in the house he built, overlooking the trees he planted, cared for by the doctor he mentored and the family he raised. Collectively we did well in honouring him in the final stage of life. Family, friends, and carers - each contributing to the best of their ability. Peace in the house.  
Last weekend, the author Diane Athill described her care home: "This place is a dream. I'd been here for about a week and I thought: 'What is it about this place that's so marvellous?' And I realised, it is goodness - an extraordinary feeling of goodness. None of these people are anything but genuinely kind. That's the secret of a decent place."  
There's been little peace recently as far as the topic of caring for the elderly is concerned. A report earlier this year on healthcare revealed an attitude - both personal and institutional - which fails to recognise the humanity and individuality of the elderly and to respond to them with sensitivity, compassion and professionalism. A survey of residential care homes and providers of outreach services found that older people face isolation, a lack of community and funding. The drastic public sector cuts and disastrous manoeuvres in privatisationcontribute to an increased sense of vulnerability in the already vulnerable.  
In his final book The Radical Disciple, John Stott reflects on the final part of life: "We come into this world totally dependent on the love, care and protection of others. We go through a phase of life when other people depend on us. And most of us will go out of this world totally dependent on the love and care of others… It is part of the design, part of the physical nature which God has given us."  
We all have a lot to gain in the season of parent-care, as Dr Emily Ackerman explores in A Time to Care. The transformative element does not merely concern our heart and home. It is wider than that. In ancient Greece, the oikos referred to the house and everything included, such as extended family, slaves and farmland. Nomos means act, law, or principle. The Ancient Greeks first combined these two roots to form oikonomia. Eventually, the word 'economy' was born, which literally means "the principles to maintain our house". Whether that "house" is government or family is relative.  
There is a Christian imperative to develop good practice and challenge political and entrepreneurial malpractice. For poor care for the elderly is not only a tragedy, but also a scandal. Bishops have rightly called for rightdecisions and a new framework of trust. We need a vision and ardent advocacy concerning our collective 'house-keeping'. And in view of the ageing society, we need a long-term commitment. Demographic projections indicate there will be more than 11 million people over the age of 65 within 10 years. 
God's word gives us a glimpse of shalom in the community: "Once again men and women of ripe old age will sit in the streets of Jerusalem, each of them with cane in hand because of their age. The city streets will be filled with boys and girls playing there."   The imagery is one of communal wellbeing, shalom. Collectively - government, service providers, families and community - we need to do well.  
And, as far as the household of faith is concerned, caring for, and advocating on behalf of the elderly is an intrinsic part of radical discipleship.
Marijke Hoek, coordinator Forum for Change

Friday, 10 June 2011

An afternoon with friends

On Wednesday afternoon the local MND Association branch visited Aston Pottery for a demonstration and then for tea. These are really good afternoons when those of us with MND and friends and families spend time together.
Watching the demonstration

Although it was windy, the rain held off and from time to time the sun came out. Aston Pottery is near Witney and produces its unique brand of tableware, and also has an Aladdin's cave of a gift shop and a big beautiful café. The 18 of us started with the pottery (I believe it's technically known as slipware) demonstration given by Marian, one of the potters. She showed us the processes from pouring to completion - well, not all of them, I seem to remember that there are 27 separate processes in all, taking over two days. She was, I must say, an excellent teacher - well organised, expert and enthusiastic about her subject. I certainly ended with a great appreciation for the skill of the potters and decorators and the vision behind the whole enterprise.
Marian at work

It's amazing how split-second some of the timings need to be: for example, too short and the teapot handle is hollow, too long and the spout is solid. And there's no mass-production here. It all depends on the human factor. I was especially impressed by the glazing process, which is dipping the article into a suspension of four minerals for a few seconds. As it dries the design is completely covered in the creamy deposit. Only after the final firing at 1100+˚C does the deposited suspension melt into a micro-layer of glass.





After the wonders of potting, we proceeded to the joys of eating some of the locally made cakes and having tea from, of course, Aston pottery.

This is always the best part of such afternoons, when you sit and talk (or just smile) with your friends, and enjoy what you might call fellowship. In one way it's tinged with sadness, as you're aware of friends who have died since we began going. But there's also that great optimism and humour which is oddly a mark of the Association members. Anyway the slabs of cake were vast - and delicious.
Anne and Rachael facing us, with the Durkins

In the café
I forgot to mention that I'd been to the MND Clinic in Oxford on Monday morning, to see my new consultant, Kevin Talbot. There I'd been greeted by Anne, the Association visitor, and then was seen by Rachael Marsden, the clinic coordinator, who gave me a peak-flow

breath test and a quick interview, before I went in to see Professor Talbot. He agreed with Dr Donaghy's diagnosis of PLS (where the upper motor neurones are affected). He had a student there, which was interesting as he explained my symptoms to her. It's an excellent set-up.

It was nice seeing Anne and Rachael again at Aston on Wednesday afternoon. It feels like integrated care.

Thursday, 9 June 2011

The good bunny

I was reminded of this true incident by recent news stories. Early one summer morning in 1976 a young couple was going down from Watford to the Isle of Wight. On the A3 road near Micheldever, the two-door beige Morris Minor they'd been conned into buying by a very nice (apparently) man started to steam. As they had a sleeping baby in a carry-cot on the back seat, they pulled over to the edge of the road. They hurriedly took the carry-cot out of the car, and then the young husband opened the bonnet. The engine was scalding hot. The radiator cap was fizzing like an angry pressure-cooker. Using a cloth, he gradually released the cap. The radiator was completely empty.

Of course, this was in the days before mobile phones. There weren't any buildings in sight. Vehicles occasionally sped past, but it was very early. They were bound to miss the ferry. Then a Ford Escort passed them, stopped up the road and reversed. An attractive woman of about their age, casually dressed, got out and walked back. "Can I help?" she asked. Having explained their predicament, she told them there was a garage a mile down the road and offered to take one of them to it. They gratefully accepted the offer. Leaving his wife looking after the baby, the husband went with her and got a container of water, and was then driven back to their car. They thanked their rescuer, and as she drove off, the husband said to the wife, "Did you see the badge on the back of her car?" She hadn't. It looked like this:
 
"You know," he said, "I think we've been rescued by a bunny girl." Presumably she'd been working till the early hours in Park Lane. Now, then, as today, bunnies were despised by men as objects of exploitation and fantasy, and by feminists as willing accomplices of male exploitation, and by respectable people as merely immoral. 

I happen to know this story's true because Jane and I were the couple, and the baby was our new daughter. We actually made the Isle of Wight ferry, and reached Jane's parents safe and sound. I bought some radiator additive to seal the hole - which helped but didn't ultimately solve the problem. So eventually we sold our liability. We never saw our rescuer again. I'd like to think she might read this, and hear me say, "Thank you."

I can't say I applaud the reopening of the Playboy Club in Mayfair this month after 30 years. I could understand Slut-walk marcher Bea Campbell's ire at bunnies as symptomatic of male exploitation: "dressing as Hugh Hefner wants" (Today programme). However, I still reflect, "Who do you suppose was neighbour to that couple stranded on the A3?"

Wednesday, 8 June 2011

Here we go again, Aunty

Summer must be a-coming in. The season of media-created news. Last night I saw a trailer for the BBC's latest salvo in their campaign for the legalisation of euthanasia, fronted by millionaire author Terry Pratchett, about people wanting to decide when to die. We've already been told that it will include a scene in which a man with Motor Neurone Disease is assisted in committing suicide at - yes, you've guessed it - the European euthanasia capital, Zurich's Dignitas facility. This is appears in direct contravention of the World Health Organisation's guidelines about media portrayal of suicide: "Don’t publish photographs or suicide notes. Don’t report specific details of the method used. Don’t give simplistic reasons. Don’t glorify or sensationalize suicide."   


There's an excellent comment in the Christian Medical Comment on the subject, which I do urge you to read. Peter Saunders asks questions which really do need answering, about the impartiality of the BBC on this issue. To balance the repeated programmes advocating and sympathetic to assisted suicide, where are the equivalent about hospice and palliative care? Where are the programmes about the people with terminal conditions who have chosen to live rather than take their lives? Where are the programmes about Matt Hampson, Alison Davies, Kate Allatt, Katherine Araniello? Where are the programmes about disabled people's fears about the consequences of legalisation? Where was the feature about Scope's survey - see my post - ?  


What do we do about the broadcasting medium which we fund through the licence fee - when it doesn't follow even its own guidelines? What does "public interest" mean? Does it mean titillating the public's interest-buds as the tabloids argue? Or does it mean acting in the public's best interests?


However, let me acknowledge a good public interest programme on Radio 5 Live last night: Depression in cricket. It includes Marcus Trescothick talking about his depression, and Matthew Hoggard - and Kevin Saxelby talking about his brother, Mark, who committed suicide. A thoughtful programme.

Tuesday, 7 June 2011

What's a Barnabus?

Last Friday, Pete Beckley and his wife Jane brought round the piece I'd commissioned for my lovely wife's big 6-0. It's a sort of omnibus, for books and bits and pieces and everything. It's a unique creation (though it does have a posher brother). Ever since we moved in, the kitchen table carried a shoe-rack which held her recipes, at an increasingly precarious angle. Well, it did its job, but was a bit of a blot on the landscape of the refitted kitchen.

'Barnabas'
Being friends with a rising star of furniture designers, it was obvious, really, wasn't it? Get an early Beckley original! And that's what we now have. None of your boring four-square flat-pack shelves. I didn't want that. This is a work of art, beautifully crafted and pleasing to the eye. And as for practicality - you wouldn't believe the difference it's made. It's very encouraging.... And I see its posh brother is called Barnabas ("son of encouragement"), which was on display at Blenheim, when we were in Blackpool. You can see it on Pixel Furniture's Facebook site, along with others pieces of Pete's work.

The best way to describe ours is with pictures. It's a thing of beauty. (Wasn't that what Keats said about a Grecian urn?)
Our "Barnabus"

Fly's eye view

In context
Now here it is, in operation:
All on board

   
Even standing room for pens and pencils!

"Craftsman's art..."

Monday, 6 June 2011

Back to reality

As we sped south down the M6, we passed a very unpleasant accident on the north-bound carriageway, three fire engines, an ambulance or two and any number of police cars. Unsurprisingly there were miles of nearly stationary traffic. It was a bit of a reality check, as was the news of the Southern Cross care homes fiasco which could leave 31,000 elderly and vulnerable people without care and a home, and of course all their carers jobless.

I don't pretend to understand all the convolutions of the private equity companies that have played their part in bringing the company into this parlous state, but some people have clearly made a lot of money out of it, such as Wall Street financier who made £500 million out of it, and its former chief executive, Philip Scott, who sold his shares in the company for a mere £13 million four years ago.

And then there came the horrible Panorama programme about Winterbourne View, the "care home for adults with autism and learning disabilities run by Castlebeck, a company which has a £90 million turnover and runs more than 50 other care homes. The company charges the NHS and local authorities up to £3,500 a week to care for patients" (according to the Telegraph). The care there amounted to torture of utterly vulnerable people, here in the UK. The Panorama programme shocked even the owners.

I hope it shocks the government too, so that, if it decides to go down the line of using private companies, it doesn't invest in firms like those. I can't help remembering that when we were up in Stockport, by far the best old people's home was one owned and run by the local authority. It was the only one that invested in training its staff, for example. Not surprisingly, private homes didn't bother - well, training cost and didn't maximise profit. Now here's an idea. How about laying down minimum qualifications for staff in homes, and an obligation to train, in every contract? If we dogmatically insist on going down the private road. Otherwise I fear our health and care services could be heading for a horrible crash.

Friday, 3 June 2011

Disabled in Blackpool

A prom carriage, with Dave's cousin (?)
Or "handicapped", as it's known in the States, so I learned yesterday. This post, I guess, will be of most interest to others who are disabled like me, although it gives me another chance to go on about our fab weekend in Blackpool, before the magic wears off completely! One quarter of Blackpool residents have a limiting long-term illness, and so one would expect it to be a good place for disabled holiday makers. On VisitLancashire's website, there are 84 listings under 'Disabled', including one attraction and 12 hotels in Blackpool, but no events and no restaurants there. I know that such sites rely on people submitting listings, and so this is no criticism of the Tourist Board who, as I've said, did us proud. But come on, you Blackpuddlians, we'd like to know more!

At Tiggis, No 1 for eating
Of course there are a lot of things in a resort like this that being wheelchair-bound makes impracticable, like riding in the carriages on the Prom and, I imagine, in the trams. I suspect the Pleasure Beach rides are also out. But there's plenty one can enjoy in a wheelchair - as we discovered - and, from the friendliness we experienced, I'd guess there'd be no lack of help, for example for a child wanting a donkey-ride. The Winter Gardens were very accessible (with three rather cramped disabled toilets). Frankie & Benny's was accessible and, of course, McDonalds, but, as you'll have gathered, Tiggis in Lytham St Annes was the runaway winner in the restaurant stakes. As I've mentioned toilets, there seemed to be an adequate supply. We found one locked up, in Lytham, but within 100 yards was St Annes' Pier with its redeeming feature, the disabled loo, which is a good size, well-equipped, clean and even smelling nice. I surmise that someone takes a pride in looking after it. So that takes the coveted loo award.

The Ashley Victoria Hotel, No 1 accommodation
As for hotels, clearly we didn't have different experiences to compare ours by, except by location and external appearance. Blackpool, exposed as it is to the westerly winds off the Irish Sea, must be a fiendishly difficult place in which to maintain the outside of buildings. Many hotels and b&bs near the front looked decidedly sorry for themselves. The Ashley Victoria facing north/south and quite newly painted outside and in was at the smart end of the spectrum. Its location, in a street leading on to the Promenade midway between South and North Beaches, suited us admirably. The facilities worked well for me in my wheelchair and with my rollator.
Our wetroom

The ensuite wetroom speaks for itself. Plenty of grab rails, high pedestal, right-height hand basin, shower chair and non-slip floor.
Well done.

Our bedroom
There was just room between the double and single beds for my narrow wheelchair. The decor was tasteful; our room had all the facilities we could want.

Looking seawards


If you sat in the bay-window, you got a glimpse of the sea.

I suppose it would be technically accurate to call it a guesthouse, as it doesn't do full-board, but the breakfasts (to music) make up for it ("Breakfast like a king, lunch like a prince, dine like a pauper"). Its own website describes it as "family accommodation" and specifies no stag/hen/single-sex parties. Indeed it was very quiet, and we slept unusually well.

I have to say that our stay there was made by the hospitality of Diana and Wally who run it. They were welcoming and sorted out our needs cheerfully. Sadly I have a great photo of them, but promised Diana I wouldn't post it, as she hadn't done her hair! It looked fine to me, I have to say. You'll just have to take it from me that they're lovely people. (And I'll post one of the ballroom couples instead!)

So, you may be relieved to read, my Blackpool saga nears its end, but not before I thank the people involved in arranging it:
Caeshia St Paul - of Classic FM
David Gore - of the Winter Gardens, Blackpool
Kate Campbell - of Visit England
Nikki Duckworth - of Visit Lancashire
Diana and Wally Ogunbiyi - of the Ashley Victoria Hotel
Jane - my lovely driver and wheelchair pusher.
"Without whom all this would not have been possible"
I am really a blessed man.

Thursday, 2 June 2011

Having a ball in Blackpool

LMS poster outside our room - note Jane & me on left
from benandstefanie.com

As you'll have gathered, we enjoyed our taste of the Blackpool Dance Festival 2011. I do hope there'll be dancing in heaven, probably not of the Rumba type, and, if there is, I hope there'll be as many free lessons as you need - and that I'm cured of my two left feet inter al! Although we were watching amateurs, I'm aware that hours and years of practice lie behind those beautifully coordinated and expressive movements. I read on one dancer's profile (Ben Taylor) that he'd started dancing aged 8 and his partner (Stefanie Bossen) at 5. 15 years' dedicated practice!

Our day wasn't quite over when we left the Winter Gardens. Next stop the Ashley Victoria Hotel, where, you may remember, Nikki Duckworth of the Lancashire & Blackpool Tourist Board had fixed us up instead of the disabled-unfriendly original place. From the start it was good news. Wally, our host, had kept a parking space for us right in front of the hotel and helped us to our room on the ground floor. I'll have more to say about being disabled in Blackpool. It's enough to say that Nikki had found an ideal place for us. It was clean, nicely decorated and unpretentious.

Our next move was finding somewhere to eat. We tried Frankie & Benny's, but we'd have to wait 3/4 hour for a table. Having sat for 5 minutes listening to rather too loud music, we decided to cut our losses and headed across the car park to McDonalds, where the music was quieter, the food cheaper and the tables dirtier. But, to be honest, we didn't need more. And so to bed, anticipating the excitements of another day.

Monday dawned cool and damp, though the hotel heating kept us warm plus a full English breakfast at a very civilised hour! Then it was out to explore the delights of the North Beach Promenade. I couldn't help noticing the generously proportioned profiles of many of the holiday-makers - perhaps it was just a contrast with the super-fit dancers of the day before! For some reason, Jane wasn't attracted by the Fun Palace. Trade at that time was slow. No doubt it had picked up when the sun came out in the afternoon. We looked at the hats, and the rock and candy-floss, but weren't tempted. Jane quite liked one of the tee-shirts, but then we remembered our age....
The Big One

Fairhaven Lake, Lytham St Annes
Having exhausted the delights of the north, we headed south in the car, passing the Pleasure Beach with The Big One in action. By an exercise of immense will-power, we resisted going in, and drove on south. On the Lytham road, there was a reminder of the changing face of tourism - a shut-down and decaying holiday village. Perhaps one day a use will be found for it. Driving into Lytham St Annes brought us into the other face of Lancashire's seaside holiday industry. Very polite (mainly). Home of the Royal Lytham & St Annes Golf course when next year's Open is scheduled. Great sand dunes, which seemed unsuitable for a wheelchair, and so we settled instead for Fairhaven Lake, a park-cum-nature-reserve, with a very wheelchair-friendly path right round the perimeter. While we were there, the sun came out.

St Annes Pier
We moseyed around looking for postcards and came across the St Annes' pier - a rather half-hearted affair, especially as the sun-deck at the end was closed. This is clearly where the Lythamites let it all hang out. Sad to see there's a clairvoyant here as well as few in Blackpool - what a waste and blot on the landscape! There was one redeeming feature here, however.

At Tiggis, Lytham St Annes - highly recommended
We thought we'd look out for somewhere to eat in the evening, and ended up having a cappuccino and a mocha in Café Nero. Jane's experience from Cornerstone came in handy there. There were some dark chocolate brownies on display. When we asked for one, they apologised but said they were still frozen. "Could you give it a few seconds in the microwave?" Jane suggested. So they did - and it was worth it. Yummy! Cornerstone, Grove, teaches Café Nero, Lytham St Annes a useful wrinkle! In return they recommended the local Tiggis for our evening meal - which proved an excellent tip. Very good food, excellent service, and good disabled access. A great finale to an fun- and action-packed day.

As we drove back to the hotel, along the Golden Mile under repair, a solitary figure was gazing out over the sands as the sun set.