Ashya King

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chaggle
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Ashya King

Post by chaggle » Mon Nov 09, 2015 5:11 pm

I can't find an existing thread on this subject - did we really never discuss it?

BBC Article

It's being reported everywhere today that Ashya King is now 'cancer free' and that his father Brett is saying that this is a miracle and completely justifies his actions in removing the boy from the UK and insisting on proton beam therapy.

Good news indeed that the boy is thriving,

What it is not, of course, is any kind of miracle, nor does it justify what the parents did in any way.

PBT was the wrong treatment for the condition which is why the NHS team didn't recommend it. The very big danger is that other people in a similar position will put pressure on their medical teams for the same treatment.

Proton beam therapy looks to me to have, at the moment at least, some of the attributes of a sCAM.

There is apparently little or no evidence that it is 'better' than conventional radiotherapy. It is promoted vigorously by private companies for profit. The companies running the PBT centres are reluctant to conduct proper trials for fear of expensive failure.

What the therapy does have which differentiates it from a conventional sCAM is a plausible mechanism - it *should* work.

The UK government is about to spend 250,000,000 quid on two of these facilities.

The Mirror includes this
Some medics say that only 1% of UK cancer patients are suitable for this kind of therapy while others have said more evidence is required to prove it is more effective and kinder than conventional radiotherapy.
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chaggle
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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:11 pm

Some detail on my assertions about the trialling/effectiveness of PBT...

http://annals.org/article.aspx?articleid=745053
In summary, several studies of charged-particle radiation therapy for cancer have been published. However, these studies do not document the circumstances in contemporary treatment strategies under which radiation therapy with charged particles is superior to other modalities.
http://annals.org/article.aspx?articleid=745073
...few randomized studies have compared protons with the best conventional radiation therapy. Why? First, constructing a new proton facility costs $100 million to $150 million. Technology companies do not usually have the resources to construct multiple facilities for testing purposes alone, because the potential financial rewards are much less than for those of oncology drugs. There is no patent protection on protons, only on specific techniques of generating those beams. If an institution invests more than $100 million to construct such a facility, can it afford a negative result from a randomized trial?
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Dubious Dick
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Re: Ashya King

Post by Dubious Dick » Mon Nov 09, 2015 5:12 pm

Definitely worried that this will be widely touted by the pseudo medicine scammers as 'proof' that any number of dodgy 'treatments' deserve backing.

So far we only have the fathers word that he is clear of cancer, and no details of all the treatment that he may have received.

It was deeply unfortunate that the parents were 'martyred' by jailing them.

The other issue that this touches on is the difficulty of conducting ethical trials on the like of PBT. I think this was one of the big problems with the Saatchi medical innovation bill as well.

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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:12 pm

According to the BBC article (which conflicts with other articles) he did have chemo. Together with the PBT it is possible that that constitutes a correct and completed protocol and therefore he did in fact have all the treatment necessary - albeit the wrong type of radio.

Not a miracle at all just medical science doing its thing.

Brett King - the father, together with his son Naveed, has conducted a quite brilliant PR campaign which I'm sure will have convinced many that what he did, based on a bit of surfing, was correct and that the nasty NHS was merely penny-pinching and putting his son at risk unnecessarily.

The other side of this has hardly been stated by the NHS experts - possibly because of patient confidentiality.
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Re: Ashya King

Post by Dubious Dick » Mon Nov 09, 2015 5:13 pm

chaggle wrote:According to the BBC article (which conflicts with other articles) he did have chemo. Together with the PBT it is possible that that constitutes a correct and completed protocol and therefore he did in fact have all the treatment necessary - albeit the wrong type of radio.

Not a miracle at all just medical science doing its thing.

Brett King - the father, together with his son Naveed, has conducted a quite brilliant PR campaign which I'm sure will have convinced many that what he did, based on a bit of surfing, was correct and that the nasty NHS was merely penny-pinching and putting his son at risk unnecessarily.

The other side of this has hardly been stated by the NHS experts - possibly because of patient confidentiality.

A bit more detail and debunking of the popular myths surrounding the story here. As always, so much more to the story than meets the eye! (As tweeted by Simon Singh):

http://www.independent.co.uk/voices/com ... 16486.html

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chaggle
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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:13 pm

Typically poor article from The Mail that suggests the 'The NHS' or something called 'Proton Partners International Ltd' will open three Proton Beam Centres in 2017, which is earlier than the two the NHS plan to open in 2018.

Cue lots of demands for expensive inappropriate treatment.

It would NICE ( ;-))if proof of efficacy or other benefit to the patient were demanded from these providers before the NHS spends lots of money treating patients who have heard on the internet that Proton Beam Therapy is what they need.
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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:14 pm

Note that this seems to be only on BBC South and BBC Oxford (Sky channels 964 and 965).

http://www.bbc.co.uk/programmes/b05qyjl9
The story of Ashya King - the five-year-old whose parents removed him from Southampton General Hospital because they wanted a different treatment for their son. For the first time, staff at the hospital talk about their role in events which led to a public outcry and hate mail being sent to doctors and nurses. Health correspondent David Fenton explores why the family turned their backs on the NHS and sought cancer treatment abroad.
I wonder what they are allowed to say considering patient confidentiality.
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Re: Ashya King

Post by Ketchup » Mon Nov 09, 2015 5:15 pm

The documentary is on TV tonight at 7:30.

It's not on in my area. The TV guide schedules 'A Question of Sport' for that time slot.
However, it does indicate that the programme will be made available on iPlayer shortly after broadcast.

Bit of a mention here: http://www.bbc.co.uk/news/uk-england-hampshire-32219005
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chaggle
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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:15 pm

Here it is on on IPlayer

To my surprise the programme said a lot - much more than I expected. In particular it answered three points which I wasn't sure about...

First, it confirmed my non-expert assumptions about, and reasons for the unsuitability of PBT - they explained quite clearly why it is not appropriate in this case.

Second, the programme said he did have PBT - as it wasn't appropriate I did wonder whether he had actually received the treatment

Third, the programme said that he has not had chemo - there were conflicting reports about that.

I thought it was a very frank account of the professionals' side of all this and I'm actually quite surprised, considering patient confidentiality, that they were able to be quite so open.
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Re: Ashya King

Post by bindeweede » Mon Nov 09, 2015 5:16 pm

I've just watched the prog, though constant streaming problems, so perhaps many other people trying to watch too.

Well-presented, I thought, avoiding the media hysteria but including some of the rather extreme comments from the boy's family.

And if the family felt they had valid points to make, which they did, I wonder why they declined to take part. Their choice obviously.

Then, there are the effects of the saga on the professionals involved - very difficult to assess, I expect.

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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:16 pm

Here it is on YouTube for anyone having difficulty with iPlayer.

https://www.youtube.com/watch?v=dUM-10Z ... cation=ufi
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Re: Ashya King

Post by bindeweede » Mon Nov 09, 2015 5:17 pm

chaggle wrote:Here it is on YouTube for anyone having difficulty with iPlayer.

https://www.youtube.com/watch?v=dUM-10Z ... cation=ufi
Thanks. Posted on FB and I even did a tweet - or whatever.

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chaggle
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Re: Ashya King

Post by chaggle » Mon Nov 09, 2015 5:17 pm

bindeweede wrote:
chaggle wrote:Here it is on YouTube for anyone having difficulty with iPlayer.

https://www.youtube.com/watch?v=dUM-10Z ... cation=ufi
Thanks. Posted on FB and I even did a tweet - or whatever.
I saw the FB post last night and went to share it this morning but can't find it now. How strange...
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Re: Ashya King

Post by bindeweede » Mon Nov 09, 2015 5:18 pm

chaggle wrote:
bindeweede wrote:
chaggle wrote:Here it is on YouTube for anyone having difficulty with iPlayer.

https://www.youtube.com/watch?v=dUM-10Z ... cation=ufi
Thanks. Posted on FB and I even did a tweet - or whatever.
I saw the FB post last night and went to share it this morning but can't find it now. How strange...
This seems to happen to some of my posts on FB - perhaps others have the same experience. I've reposted it.

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Re: Ashya King

Post by Ketchup » Mon Nov 09, 2015 5:19 pm

bindeweede wrote:if the family felt they had valid points to make, which they did, I wonder why they declined to take part.
The family are apparently planning to make their own documentary: http://www.mirror.co.uk/news/uk-news/as ... ho-5388427

and then I suppose the inevitable book will follow.

There is still a lot of controversy surrounding the whole topic of of PBT anyway and this promises to increase over the next few years:

This report from last month:
From 2018, PBT will be offered to patients in the UK at UCLH and The Christie NHS Foundation Trust in Manchester.
The Government has committed £250 million to fund the two centres.

UCLH’s planning application to build its centre was approved by Camden Council planners and the Greater London Authority, which means building work is starting on the centre in spring 2015. The aim is to open the centre in 2018.
https://www.uclh.nhs.uk/aboutus/NewDev/ ... /Home.aspx


and this:

'Fury as NHS pays £125million for the £35million machine that saved Ashya King'
Two Proton Beam machines are being bought for £250million but the price is way above the £35million for the same machine used at a clinic in Prague to cure Ashya

An NHS decision to pay well over the odds for the same equipment that saved Ashya King has branded a scandalous waste.

Two Proton Beam machines are being bought for £250million.

But the price of £125million each is way above the £35million for the same machine used at a clinic in Prague to cure five-year-old Ashya’s cancer.

And it is feared the machines, bought from a US firm, could be obsolete when brought into operation in four years.

MPs, including one from the Coalition, have called for an inquiry.
http://www.mirror.co.uk/news/uk-news/fu ... on-5388338
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