Saturday 10 January 2009
Deborah Orr: The shocking price paid by those not perfect enough to be treated
‘What haunts parents of disabled children is what will happen when they are no longer around’
Barry Baker did not lead a scrupulously conventional life. And his lack of convention was not, in anyone's terms, rebellious, glamorous or bohemian. On the contrary, at 59, he still lived alone in the childhood home he had shared with his parents until they had died. Overweight, he'd had hip operations, and walked using sticks. His poor health, perhaps in combination with the years of dependency on his parents, contributed to the disordered messiness of his home.
Baker's life may have had its limitations. But he did his best. He took a taxi to work every day, at a Job Centre in Brighton, and travelled by bus every Sunday to his favourite pub, where he had lunch with friends and played cards. All of his neighbours described him as a kind and gentle man. Those who knew Baker organised a memorial service for him, after he had died.
Baker died on 29 November, after suffering chest pains and calling an ambulance. The telephone operator talked to him as he waited for the ambulance to come, and when he collapsed, the line was still open. So the operator could still hear what was going on in Baker's home, after the paramedic crew arrived.
She says she heard a conversation between two men, which disparaged the state of Baker's home, formed an opinion to the effect that Baker "was not worth saving", and decided that rather than resuscitating him, they would report that he had been dead on arrival. She handed the recording she had made of the phone call to her bosses, who alerted the police.
The two men have been suspended, arrested on suspicion of wilfully neglecting to perform a duty in public office, and bailed. An inquest into Baker's death has been adjourned, while investigations continue. Can these allegations really have any foundation in fact? Can people in Britain today really end up dead because medically trained professionals reckon that they are not quite perfect enough to be treated?
The mental health charity Mencap claims that actually this happens quite often. In a recent report entitled Death By Indifference, the organisation highlighted six cases in which people with disabilities were denied life-saving treatment, or just neglected because they were, like Baker, unable to speak for themselves. Most unbelievable is the case of Martin Ryan, 43, a man with Down's syndrome who was admitted to hospital with a stroke that had left him unable to swallow. Because of "a total breakdown in communication" he was not fitted with a feeding tube for 26 days. That "total breakdown" was this: doctors had thought nurses were feeding Ryan through a tube in his nose, but nobody was feeding him at all. By the time this "oversight" had been picked up, Ryan was too weak to have an operation inserting a tube into his stomach, and he died from starvation five days later.
In another case, Emma Kemp, a 26-year-old with severe learning difficulties, was diagnosed with lymphoma. Because of her "challenging behaviour", doctors decided not to treat her, saying she would not co-operate and would not give consent. By the time her mother had pursued high court action to get the treatment, Kemp's prognosis had slid from 50:50 to one in 10, and her parents opted for palliative care.
Ann Abraham, the parliamentary and health service ombudsman, has been looking into Mencap's allegations and is expected by the end of the month to deliver a report vindicating the charity's allegations. For campaigners this will be highly significant as, despite all the evidence to the contrary over many years, the medical profession is highly resistant to the idea that there is institutional discrimination against disabled people within the health service.
Sadly, for the parents of children with disabilities, this is quite obvious. What haunts many of them, as they struggle to provide care for the children, is what will happen when they are no longer around to provide advocacy. These paralysing fears, it is now perfectly obvious, are well founded.
Guess this is why we still believe in love
It was a clever wheeze indeed to reunite Kate Winslet and Leonardo DiCaprio, all these years after their pairing in the sickly mega-hit Titanic. And it was even more of a good idea to cast them in Revolutionary Road, based on Richard Yates's 1961 debut novel describing a failing 1950s marriage.
The film follows April and Frank Wheeler as their youthful dreams of love and happiness fall apart under the strain of suburban conformity. The story describes how quickly the sort of idealistic romantic love that Titantic celebrated can collapse into disappointment and frustration.
There's a scene, during April's elaborate machinations aimed at reigniting the sense of hope and adventure the couple once shared, in which where April tells Frank that he's the most wonderful and beautiful thing in the world: a man.
I was about to roll my eyes, when it occurred to me that if the two genders actually did have that sort of passionate mutual regard for each other, the world would be a much better place. Which only goes to show that if you're in the mood, you can scare up romance almost anywhere.
A sad day when your dog can't chase a stick
It was a shock, after acquiring a dog for the first time in 35 years, to learn how much things had changed. Back then, all you had to do was get a dog licence, at 37.5p. Now, that's all that you don't have to do.
The dog even has to be fitted – if you're a "responsible" owner – with its own microchip. I was certain that the microchip would serve no useful purpose whatsoever, and thus it has proved, so far anyway.
But most irritating are the restrictions on the things that used to be at the heart of a dog's life. Our own vet told us, with some passion, that we must never give the dog cooked bones of any sort. In the old days, chicken bones where a no-no, because they splinter so much. We're now told that no bone is worth the risk.
We argued with our vet, saying that our dog had enjoyed many a lamb shank and a beef rib. She doomily told us that a dog can enjoy cooked bones year after year. Then one day, a bone goes horribly wrong, and the dog's hooked up to a drip, or worse. Bones can be fatal. We tried to persuade ourselves that this was similar to asking humans to refuse to eat fish, in case they choked on a fish bone. In our hearts we knew that humans can make informed choices about the risks they are willing to take, while dogs cannot.
Now it's sticks. One must not throw a stick for a dog. Another vet claims that the injuries dogs sustain when bouncing sticks penetrate their bodies can be as awful as those sustained by humans who drive without seatbelts and end up on the steering column. He says that when he sees someone throwing a stick for a pet, he wants to run over and wrest it out of their hands, like people whose relatives have died of lung cancer want to with smokers.
One tries to be impervious to all this advice. But often it seeps in and plants fear. I have now started practising stick-censorship. Nothing too sharp. Nothing too big. Nothing with a hard-to-judge bend, or a jutting, eye-poking twig. The vet says this is not good enough. Only rubber toys are acceptable. Preferably in the shape of bones, of course.
The recession has spawned many anxieties, but precious little in the way of new parlour games. Which makes Paul's achievement all the more magnificent. The other evening he amused his friends by asking us to guess the interest rate on the flyer he'd found on his doormat, offering loans. Sadly, none of us got it right. Surely 182 per cent ought to be getting somebody locked up.
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