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Friday 28 January 2011

Posting 700

I am not sure whether the rope was for keeping the warriors in,
or the customers out!
Stanley, Hong Kong, December 2010

I lost my Oh Dear List for January

The list is lost but this does not matter as I have already used most of the items on it at some time during the past few weeks and some of them have also appeared on other people's blogs, for example one turned up here:

I am sure that my list will turn up again somewhere, perhaps when I get my new computer working hard for me. Or it will reappear when I sort out the material on the ten USB sticks that I carry around with me everywhere. I am going to put all the information that they store into good order on my very sleek, 500GB Netbook Friend Christmas present. I will unearth the list somewhere soon, and it can then appear in February.

Is this another Oh Dear or not?

I just received a Google alert for a newspaper report about another £45,000 trip to the USA, for a spinal operation on a very young child:

I started this month, on January 6th to be precise, with a posting on the same operation, a dorsal spinal rhyzotomy, and received a lot of comments and emails from conductors. As I have yet to hear from Andrea Benyovszky, though, who I think has the most information on this subject, I will wait a bit longer before posting the information that I have gathered. Earlier posts on this topic, with reades comments, can be read here:

I still do not know whether the newspaper article above is another Oh Dear or not, but when I read this sentence, I did wonder:

"In the future, the operation may be available in the UK, subject to the NHS approving the procedure."

I wondered whether, before families fly off to America for this operation, the NHS makes the information available to them about why the operation has not yet been approved in the UK. From what I have read there do seem to be as many good reasons for not approving this operation as there are for approving it.

It is a very difficult decision to take, both for the NHS on whether to approve the operation and for a family as to whether or not to fly off to USA for it.

It is a decision that I would find very difficult to make. I have never been asked to advise a family who stand just before making this decision, but that does not mean the day will not come when I am asked. This is why I am trying to find out all that I can about it.

It would be nice to hear more reports from conductors who have worked with children pre- and post- the SDR op.

Posting 700

Funny title. It means that this is my 700th posting on the Conductor blog.

And don't forget that I have another blog running parallel to this one.

Susie Mallett's Conductive Upbringing and Lifestyle -

1 comment:

Viktoria said...

Selective posterior rhyzotomy is a popular operation here in the USA which insurance usually pays for. The surgeon destroys nerves which show to cause a lot of spasticity. It is very carefully selected which nerves to severe.
This is a good surgery for a certain group of children with cp: the ones with mild spastic diplegia. It (of course) doesn’t teach anything, you will still need to learn to walk if you couldn’t before but that might just be several grades easier if you suddenly have a much milder version of equinovarus, adductor spasm and the sort to deal with.
It is indeed not approved in the UK. The reasons are that this is a surgery that costs a lot of money because it needs extreme skills and experience of the surgeon. In a profit-based healthcare system like here, which promotes innovation and cunning new surgeries, this type of intervention will flourish; the insurance provider, the hospital and the surgeon will be all very well paid and the patients (or his parents) are likely to go home happy. The bottom line is that if you can’t afford health insurance (it’s VERY expensive), which means millions and millions of people in the USA, this and any other advanced health care will be permanently out of your reach. The insurance companies will also try everything to turn you down to save money but this also has the benefit that those children who wouldn’t benefit from it—severely disabled tetraplegic for example—will not be referred to this surgery and the insurance company won’t approve: so you won’t see the children whose parents dragged them through this surgery out of sheer despair. I’m talking about the children who have a lot more problems than some spasticity, and even if you took all the spasticity away with a magic wand they would still remain the same.
Now, in the UK, as we know, there is socialized medicine which in my world is superior to the profit based one the USA still has because it is a lot more accessible, but it also means that posh surgeries will be introduced decades later than here and the NHS will do everything in their power to delay it so they don’t have to provide it. I read some studies (sorry I don’t have the time or energy to look them up now) according to which selective posterior rhizotomy is only marginally more effective than good old tenotomy, and although it tackles the problem a bit higher up, it eventually does the same: reduces the spasticity. This might be true, but I just can’t get the children out of my head who ended up running pretty well after a rhizotomy (with the help of some conductive education). It is simply just a little bit more sophisticated than tenotomy, but one can expect that the NHS will keep the papers which say it isn’t very close as a guard and delay the introduction of this until they can.
As always, a posh surgery a few thousand miles away is very attractive for parents looking for more options or miracles. It is unfortunate that these surgeons seem to accept children for this surgery from the UK whom they would never do if they were from the USA. The USA insurance would not pay for unsuitable candidates but since UK parents pay from their pockets, the “minor” obstacle of funding is suddenly out of the way. The UK children who travel to the USA for selective posterior rhyzotomy are not necessarily the ones who would benefit from it, but the ones whose parents looked it up, decided that it is for their child and raised the money. My advice for conductors: if you’re asked about it, you can choose to recommend it if you feel the child is really close to independent walking and it’s really only their super-high muscle tone that makes it very difficult. Otherwise it is just wasted money, energy and dreams.