There's been lots recently about how marvellous it is that the NHS is to let you
choose your own surgeon. This comes on the back of those terrible, misleading NHS "death rate" league tables, which are now to be published online - basically, you can look up your surgeon and see how many people have died while being operated on by him or her. This all kicked off some time ago with the publication of heart surgery mortality rates in various hospitals.
I expect I'm preaching to the converted and that you've all worked this out already, but there is a really massive point about all of this which many commentators seem to have completely overlooked. I meant to write about it when the heart/mortality figures were first published but I never got round to it.
The point is this: the more complex the surgery, the more likely it is to result in death. If your stupid league tables show you that nobody died following heart surgery at X hospital, it doesn't mean X hospital has magical powers - it means they probably do very ordinary small repairs, of the kind that are routine (for the surgeons, if not for the parents).
If the table shows that 4 people died at Y hospital, on the other hand, it doesn't mean Y hospital is crap at operations -- it can mean it's so good at them that it contains particularly highly skilled surgeons who are willing (and able) to undertake extremely complex, difficult procedures, even if they are of the high-risk, last-ditch kind. Sometimes they don't get the outcome they hoped for. That's all.
I do think it's important that people understand this, instead of treating these actually very unhelpful league tables as though they were a surgical version of the Good Food Guide. The thing about giving people these kinds of choices is that it assumes everyone is properly informed and reasonably bright. Ain't necessarily so. You can just see what might happen: someone who needs really complicated surgery picks the surgeon who's not had many people die on him, thinking he's the safest of bets, whereas actually the opposite might be true.
I'll blog again when we're home safe and sound after our own surgery.
There's been so much in the papers about the Human Fertilisation and Embryology Bill that I'm sure you've read all about it. No one loves the idea of human-animal hybrids, obviously, but it's hardly like we're talking about creating living children who are half kangaroo - we're talking about using "empty" eggs from rabbits or cows with genetic material from humans inserted into them. The animal component of the resulting embryo, which would be destroyed after 14 days, is about 0.1%. The Telegraph has a For and Against debate here. The Times has an excellent Q & A here.
The Catholic church has got its knickers in an almighty twist about this, as well it might since Catholics believe the soul is born at the moment of fertilisation. The church isn't mad keen on the idea of "saviour siblings", either - embryos created to donate tissue or bone marrow. ("Saviour siblings" is a bit of an emotive misnomer - we're talking about embryos that would exist for a fortnight, not about living children that would be creepily harvested of their health).
The thing is, nobody's mad keen: nobody thinks, 'Oh yes, really charming and appetising idea, and what's extra marvellous is that there are no ethical questions about any of this whatsoever'. The point is combating or alleviating or even removing disease. And it's all very well to say you want Nature or God to do whatever Nature or God does, without interference, but that rather discounts, er, the whole purpose of medicine and science. I'd be dead, for instance, or my children would be, since Nature or God wanted me to have a narrow pelvis and thus not be able to give birth "naturally". If your kids have special needs and receive treatment, they'd be dead too.
I don't think the church has any business poking its beak into medicine, actually (and I am Catholic myself). I was talking about this with my GP, who is also Catholic, a propos a Catholic charity in London that helps homeless people and which he does work for. The GP said: "If a 15 year old girl who lives on the street and has been raped twice already comes to me and asks me for the Pill, who am I to refuse? If she falls pregnant and ask to be referred for an abortion, who am I to say 'No, have the baby and raise it in a doorway'? It's a matter for my conscience, not a matter for doctrine.". I don't understand how anybody - or any body, including a supposedly charitable religious one - could take issue with this.
Here's a column by Polly Toynbee about what constitutes a moral issue in politics. Here's David Aaronovitch on "wicked untruths" from the church. This entry from our Faith Central blog is worth a look. There's masses more on this all over the place via Google. And it's just been announced that Gordon Brown will give Labour MPs a free vote re the trickier bits of the proposed legislation, i.e. mixed embryos, 'saviour siblings' and IVF.
A deaf artist who rejoices in the name of Tomato Lichy - crazy name,
crazy guy - was on the Today programme on Monday, talking about "the
right to be deaf". You can listen to the item via Today's website.
This is on the back of a new bill going through parliament which would
screen out deaf embryos in relation to IVF. Here is an
earlier interview with Mr Lichy, in which he expresses delight at his daughter being born deaf. Many deaf activists refute the notion that deafness is a disability. The movement known as Deaf Culture - 'we have a language, ergo we have a culture', the language being BSL or ASL - sees deafness as being merely a difference, like being black, or gay.
Three comment pieces about this today: one from Dominic Lawson in The Independent, who says that obviously deaf couples want deaf children, and which you can read here; one from Andrew O'Hagan in the Telegraph, who says that deafness is a "gift" children can do without, and which is here; and one from Cathy Heffernan in The Guardian, about the hearing's attitude to the deaf, which is here.
Oops, one more: Daniel Finkelstein in the Times - he thinks that "choosing a deaf baby is criminal" - is here.
Update: this was the topic on Radio 4's The Moral Maze this week - you can listen again via the prog's website. The discussion moved on to special needs generally (in relation to screening, genetics, "impaired" embryos and medical advances) and is really, really interesting - do listen if you can.
All of this reminds me of hearing the brilliant actor Richard Griffiths on Desert Island Discs last year (I think), talking about his silent childhood - both his parents were deaf and he learned to sign when he was very young in order to communicate with them. Would his parents, if they'd had the opportunity, have preferred him to have been deaf? And, rather more crucially, would he?
Sorry about not posting for ages. I'm back, and this one is a real humdinger.
Thanks to those of you who wrote to tell me about Julia Hollander. Her second daughter, Imogen, was born very badly brain damaged, and by the time she was five months old, it was all a bit much, really, for her mother.
So she told social services that Imogen was in danger, and that one night, after Imogen's incessant crying, her mother had thought about smashing the child's head against the wall. Social services asked if Ms Hollander wanted someone else to look after Imogen. She said yes.
Imogen was immediately placed in the foster care of one Tania Beale, a 30 year old who was already caring for an older disabled child. And there Imogen, now four, remains. Her mother has remarried and had another child and is getting on with her uncomplicated life. So that's nice. She sees Imogen once a fortnight.
You can read the story and an old interview in the Telegraph, here and an extract from Ms Hollander's book on the story (because naturally you give away your disabled baby and write a book about it - what could be classier?) from the Mail here. Ms Hollander was also on Woman's Hour; you can listen to the item here. There is a piece from Families section of The Guardian here. There is a new piece in the Telegraph (Monday March 10) here.
What I really want to know is what you think: is the woman an utter monster, or is she just strikingly honest and oddly brave? The latter seems to be the view the media is taking. It is not one that is shared by parents of disabled children over on Mumsnet's special needs board, or by the parent of a disabled child who emailed me and imagined Ms Hollander's thought process thus: "It was too hard and all a bit icky and not part of my lifestyle, and I'd rather stay with my bearded boyf and have another NT kid instead".
Tania Beale, Imogen's carer said: ""We all have different skills. I couldn't work in an office. If parents
can't cope with a child, the most loving thing they can do is make
sure the child is cared for by someone who can."
Is it?
Tania, Imogen's carer, has a blog called Behind the Child. You can access it here. Her take on, and response to, all of this is here.
I'm watching the news and I feel completely sickened, also furious. The BBC had just showed a report secretly filmed in the Czech Republic showing disabled children kept in "cage beds" - beds with high bars around them - in care homes. This practice was outlawed there a year ago (yes, one year) - and only because the EU complained - but is still, according to the BBC, prevalent. The relevant minister has grudgingly agreed to look into the BBC's report and mumbled something to the effect that Rome wasn't built in a day. You can read a report on the BBC's website, here. It is incredibly depressing. There's a Q&A about cage beds here.
I would like to know why a country which flouts the European Convention on Human Rights in this vile and disgraceful way is a member of the European Union. Ditto Bulgaria, with its grotesque "orphanages".
EDITED TO ADD: I don't understand why this whole subject has completely passed me by (finger on the pulse, obviously), given that it was given huge publicity by JK Rowling, who was so appalled by a 2004 Times article on the use of cage beds that she became one of the founding directors of a charity called the Children's High Level Group, which campaigns for children's human rights. Lots of this, plus details on how to join the campaign, on JK Rowling's own website, which is here.
I keep meaning to post this story, from the BBC's website, about scientists at MIT successfully tweaking a gene in mice which showed many of the symptoms of Fragile X . Read it in full here.
The Daily Mail, the Times and the Guardian all have front-page stories about the Food Standards Agency finally (30 years after the link was first made) conceding that there is a clear link between childhood hyperactivity/disruptive behaviour and food and drink additives. According to the Guardian, the food and drink additive industry is worth $25 billion, or £12.4 billion. So, let's take a guess - is the FSA going to ban these additives, as in Norway, or just, you know, shrug its shoulders and advise parents to go easy on the fluorescent orange drinks for a while?
The Guardian has a brilliant graphic that shows the rise in prescription drugs, such as Ritalin, to combat hyperactivity, but you'll have to go and buy a copy because it's not online. You can read Felicity Lawrence's excellent piece on all this here. I remember writing a column years ago saying I didn't believe in the majority of ADHD cases and that in my view most of them were diet-related, or made a hundred times worse by diet. I got called every name under the sun by incensed readers. I still think I was right - and that parents that feed their children this crap are perpetrating a form of abuse.
The two graphics below are stolen from the Daily Mail. I don't know why the bear is so squashed-looking.
Autism - and the supposed link with MMR - was back in the news last week, following an alarming report in the Observer which was subsequently picked up by most of the broadsheets. Doctor and professional debunker Ben Goldacre writes brilliantly about this in today's Guardian. The article is here. See also Bad Science, Goldacre's own site.
For what it's worth, all three of my children have had the triple jab. I am not of the opinion that doctors are part of a sinister conspiracy to deliberately make our children autistic, forcing triple vaccines onto a bewildered public for their own mysterious reasons. I have to say, I slightly question the sanity of anybody who thinks this (more people than you'd think, in my neck of the woods - bad news if you have a child who is more vulnerable to infection that most).
Surgeons at Moorfields eye hospital, working in conjunction with University College Hospital, have operated on 23-year-old Robert Johnson, who has a degenerative sight disorder known as Leber’s congenital amaurosis (LCA). The surgery involves injecting the cells of the retina of the "bad" eye with "good" gene copies. It'll be a while before they know if it's worked (in trials, it's worked on animals) but everyone involved sounds optimistic. Read details of this amazing story here. The Times' s report is here.
"Two couples whose families have been ravaged by breast cancer are to become
the first to screen embryos to prevent them having children at risk of the
disease, The Times has learnt." The story is here. Is this the beginning of a nightmare "designer baby" hell? Is it monstrously unethical because it involves destroying healthy embryos - or is it a wonderful new development for those of us whose children carry a genetic anomaly which they may pass onto their children? I'm inclined to the latter view, but with a degree of unease. Here's what the science editor of The Times had to say on the subject in today's paper. What do you think?
From the front page of this morning's Times: news of a magic-sounding pill called PTC124 which could in time "fix" faulty genes and their associated disorders. Which would be nice.
Nell had her cardiac check-up last week. It went very well and they don't want to see her again for another year. There was a very freaked-out looking couple with a tiny baby in the waiting room, which reminded us of us this time three years ago, existing in a state of constant fear and panic. I wanted to go up to them and point at Nell doing ballet in the soft play area and say, 'Look, it's going to be okay, please don't worry,' but of course you can't without knowing their baby's medical history.
This coming Thursday we have a videofluoroscopy happening at Great Ormond Street - basically they film her palate as she makes a series of sounds on demands while keeping her head perfectly still (she's just three, so this has the potential to go really wrong, even with the lure of a Peppa Pig teddy). At 5pm we see the consultant and the plastic surgeon and are told what, if anything, can be done about her speech problem, which I was put out to see described in a letter from one department to another as "very severe". The description is accurate - I just didn't like seeing it typed out in black and white. To me she communicates beautifully and her speech has improved dramatically since her regular sessions with the genius speech therapist... but then we went to a birthday party yesterday and I was struck by how chatty her little friends were, and I suddenly felt incredibly sad. The point, I suppose, is that she doesn't feel remotely sad herself - she is the opposite of shy, jumps around, tells off anyone who gets on her nerves, and spent the afternoon racing around giggling and eating cake.
Anyway - I'm feeling some trepidation. If there's nothing they can do, we "just" get her a signing helper, which is not the end of the world. If there is stuff they can do, it's going to involve surgery, which makes me feel a bit sick. But at least her cardiologist said last week that she was 100% fit for surgery and that her heart is now in such good nick that a general anaesthetic wouldn't present any additional risk. Nevertheless, I'm feeling a bit anxious.
Lots in the papers at the moment about the rise and rise of Makaton , including this report from the BBC. I really love the idea of all children being able to sign - ones that need to as well as ones that don't, even though I'm having trouble keeping up with my daughter's ability to pick up signs with supersonic speed.
Apparently we have the popularity of CBeebies' genius programme Something Special to thank for the current interest in signing - which is, ah, handy (see what I did there?) as I am planning on interviewing Justin Fletcher, the show's presenter, and Allan Johnston, its director, for this blog in the near future.
One other thought: we're always hearing about the demise of languages in our schools, and how shamefully crap the British are at picking up languages other than their own. Maybe we should do away with the tragic attempts at French and so on - knock them on the head altogether - and just teach every child in the country Makaton. Just think - that way everybody could communicate with children with disabilities that prevent them from "normal" communication. It would be absolutely fantastic. I'm perfectly serious - I think it's an inspired idea (not my own, as it happens - thanks, Suzanne). What do you think? Shall we start a lobbying group?
(By the way, Dave Benson Phillips' brilliant Makaton Nursery Rhymes tape - hitherto only on VHS - now exists as a DVD. You can buy it from Amazon by clicking here.)
This startling claim - with particular reference to Rett syndrome - is reported in the Daily Telegraph. Scientists at Edinburgh managed to make symptoms disappear in mice by activating a specific gene. Amazing, isn't it? Do have a read, it's absolutely fascinating, even though I can barely bring myself to believe it.
A new blood test has been devised which could replace amnios and their associated risks, and identify Down's in utero. Does you child have Down's? What do you think about this?
As many of you will know, major valve stuff has hitherto involved open-heart surgery. But an 89-year-old lady, Gladys Adams, was this week the first person in Britain to benefit from the operation being carried out using keyhole surgery - the Daily Telegraph's report is here. "This technique is the biggest invention in
cardiology over the last 30 years since the introduction of the
coronary angioplasty," the surgeon said. Mrs Adams was home in two days.
(Image from The Daily Telegraph - click on it to enlarge)
'Some of the most vulnerable people in society are struggling to access care,' the Commission for for Social Care Inspection has discovered. Well done! How much did that cost to determine, then?
In other news: Pope suspected of Catholic sympathies. Bear caught with trousers down in woods, squatting suspiciously. Et cetera, et cetera.
about this Ruth Kelly malarkey - she's sending her son to a private school because he's dyslexic - is the feeble way in which she's making use of the 'learning difficulties' thing to justify her hypocrisy. Until we learned her child was dyslexic, she'd been muttering darkly about 'learning difficulties' in the most cringe-making, fishing for sympathy kind of way. She must have known people imagined all sorts of things. But no: dyslexia. I'm sorry, but on the scale of special needs, it's right down there with having a bit of a horrid cough. I appreciate that being dyslexic is no fun (though not necessarily any great hindrance, either: AA Gill, the best journalist of his generation by miles, is completely dyslexic). But it's hardly the end of the world.
I have nothing whatsoever against private schools: I was educated privately myself, and so are my two older children - but then I'm not a new Labour minister. I would say this, though: mainstream private schools are utter crap for children with special needs because they're not obliged to accept any disabled pupils if they don't feel like it. The exception is the slew of hastily set-up schools which have specialised in dyslexia since the diagnosis became increasingly common in the past decade. The reasons for this are financial, not altrustic (it's explained very well in the special needs version of the Good Schools Guide), and in many - if not most - cases you're still better off at your local state school.
So that's pretty lame. Though not as lame as Ruth Kelly, who while Education Secretary went out of her way to force children with genuine special needs into mainstream state schools; she also chose to continue with the nightmare that is statementing for children with severe difficulties, when she could have simplified the system (which she didn't want to do, because she is fundamentally against special schools). That is what makes her course of action now truly appalling.
The Times' readers' debate is here.
The parents' blog is here.
The mother of a child with a similar condition gives her reaction to The Guardian here.
The Telegraph's coverage of the story is here.
The Daily Mail has commentary by Henrietta Spink, the campaigner for the disabled, here.
I don't think that's quite enough coverage, so I'm just off to write a column about it.
doesn't it? Happy new year to all of you.
Presumably you've sen the really disturbing story that's in all the broadsheets about a little girl called Ashley X. She's now nine, and when she was six her parents had her "frozen in time". She has a brain impairment called static encephalopathy, which means she can't walk, talk, keep her head up or swallow food. When she began to display early signs of puberty, her parents had her sterilised and then treated with high doses of oestrogen to stunt her growth. She was only six at the time. You can read the story in full here. There's a debate going on about it all here. Like I said, it's incredibly disturbing; in fact it makes me feel slightly sick. What do you think?
Dan's helpfully posted a link to the parents' blog under 'Comments', below.
What a depressing post to begin the new year with - sorry. I'll post something cheerful later.
of an excellent piece that's going to appear on Sunday in the Sunday Times News Review. It's about carrying on like a saint - 'Oh yes, thank you, everything's fine' - and is by my colleague Cathy Galvin, whose son has special needs.
"Upbeat. For such a little word, it delivers a hefty punch. Gordon and Sarah Brown, we learnt last week from their friends, have remained upbeat since discovering their baby son Fraser has been diagnosed with cystic fibrosis, a chronic, incurable condition. Upbeat follows in the wake of shocking news: it allows a necessary but short time to assimilate the facts about a particular medical condition, to weigh the enormity of that information against the love felt for the child, to determine that the child will have the best possible life it can whatever the odds, to accept the sincere support of family, friends and colleagues who want to believe that the changes in your life aren't really radical, aren't that far from "normal".
"Yes, upbeat allows all that. Then it leaves you terribly alone. Because upbeat also becomes the face you present to the world when asked, "How's he doing?" ("Yeah, great thanks.") Upbeat is what you show to the doctors whose job it is to prepare you for the fact that your child may not be running around with his or her siblings on the beach in the summer or snogging a new girlfriend or boyfriend as a teenager or having a family of their own one day. Upbeat is what you show frustrated teachers (should your child be able to attend school) who can see their potential but can't make them learn and who turn to you for the answer, when you can't give it. Upbeat is what as a parent you have to show to your child's siblings, so they're not too frightened by what is happening to their brother or sister. In this insidious way, wearing a cheery smile, upbeat beats you up and drags you to the ground."
UPDATE. It's Sunday. You can read the piece in full here.
'Kill disabled babies,' suggests the Royal College of Obstetricians and Gynaecology. The proposal is a reaction to the number of severely disabled children surviving because of medical advances. The story is on the front page of the Sunday Times. You can read it here.
India Knight was born in 1965. She lives in London with her three children,
writes a weekly column for The Sunday Times and has written two fiction books,
My life on a plate
and Don't you want me?
and a non-fiction book, The Shops.
After writing an article in The Sunday Times
about her daughter's special needs (Nell has a cardiac condition called truncus arteriosus, and DiGeorge Syndrome, aka 22q11 deletion) she was so
inundated with e-mails that she has launched this
weblog as a forum for parents in a similar position to keep in touch, compare notes and help each other.
You can read about India and her daughter here.
Send India a story by Email
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