Ashya King's Parents Vindicated

[Gromit]

It turns out that Proton Beam Therapy is suitable to treat his condition.

// Dr Jiri Kubes, head of proton therapy at Proton Therapy Center Czech, said: "We have agreed that proton therapy is a suitable method of treatment for Ashya. //

So the parents were right.

// The Prague Proton Therapy Centre has said its clinicians have now received five-year-old Ashya King's medical notes from his doctors in Southampton as his parents are set to be reunited with their son.

A spokesman for the Proton Therapy Centre (PTC) in the Czech Republic said it had received additional information concerning the status of Asya's health.

He said Dr Gary Nicolin, a consultant paediatric oncologist and lead for paediatric neuro-oncology at the Department of Paediatric Oncology at University Hospital Southampton, had sent complete medical reports, including operation notes, histology reports and imaging reports.
He said the PTC medical board reviewed this documentation at 8am on Wednesday. //

Congratulations to the parents for fighting for the best for their sick child. And getting the right treatment which Southampton Hospital were denying him.

The disgraceful conduct of the hospital needs to be investigated, do you agree.

[slaney]

I certainly hope a full investigation is held and all sides of the story heard.
There is much that needs to be clarified - this morning on Radio 4 the father is alleged to have said his son only has a few months to live, yet hospital sources say is chances of survival as as high as 80-85%

I don't think it's entirely a matter of cost . For the year 2014/5 the NHS will spend £50 million sending about 400 patients abroad for proton therapy - many of them children.They are sent to centers in America like this little boy with a brain tumour..

http://www.theguardian.com/society/2012/jun/06/us-medical-care-haven-nhs

...or to the Paul Scherrer Institute in Switzerland. They are not sent to Prague.

The reason that Aysha was not offered photon beam therapy is that for his type of tumour, a medulloblastoma, it is as yet unproven.
Trials are ongoing in America and although early results are promising the trial organisers say that longer follow up in necessary before agreeing to it's general use.

In 2012 there was a case of a young boy with the same type of brain tumour, whose mother ran away with him as she was convinced that doctors were planning to"fry his brain".
He eventually had chemotherapy and radiotherapy, and happily , as of last Christmas at any rate, is doing well.
http://www.standard.co.uk/news/health/all-clear-for-neon-roberts-after-cancer-therapy-9022368.html

Is going to Prague for photon beam therapy the right treatment for this little boy? I really don't know.

[Sqad]

Good post by slaney ^^^^^

[jim360]

The 2012 story from slaney's post is precisely what I was thinking of. While this may turn out to be a case where the medical advice was wrong and the parents right in the huge majority of cases it's the other way round; cursory Internet research is no substitute for a professional education and experience gained from a long career. It seems wrong to ask for a sea change in attitude because of this case.

[pixie373]

I hope it is fully investigated. Even if the hospital were/are right - they completely failed in their communication with the family, at the very least. I hope the treatment is as successful as it can be. Best wishes to all the family.

[pixie373]

Jim

//. While this may turn out to be a case where the medical advice was wrong and the parents right in the huge majority of cases it's the other way round; //

That's something we'll never know.

[gness]

You know that, Jim?

[gness]

It seems wrong to ask for a sea change in attitude because of this case.

I have read that a few times...what do you mean?

[naomi24]

A potentially terminally ill child was taken from the hospital by his parents without a word. The hospital didn’t act disgracefully - it acted responsibly and so did the police. The state has a duty to protect the young, and had the child come to grief there would have been uproar so just where do we draw a line between responsibility and irresponsibility? Should the hospital and the police have ignored his disappearance?

//Even if the hospital were/are right - they completely failed in their communication with the family, at the very least.//

I don’t think we can say that. They offered a second opinion and to help the family find alternative treatment abroad. I don’t see what else they could have done.

All involved appear to have acted in what they thought were the best interests of the child. I’m pleased the parents have been released, but it’s sad that it should have come to this.

[Gromit]

// medical management is quite often a matter of "OPINION". Clearly from what we know, Oncologists at Southampton do not agree with Oncologists in Czechoslovakia. //

// the NHS will spend £50 million sending about 400 patients abroad for proton therapy - many of them children. //

Not only do we not have a facility in the UK which most of Europe and US have access to, but we do not refer any brain tumours for this treatment. The patients sent abroad are for Eye operations. These centres do treat childern with Brain tumours, and many US and European children have had treatment. But the NHS does not refer British children. Those in the UK lucky enough to have had it, have paid privately.

[Gromit]

The Christie Hospital in Manchester will begin using PBT in 2018.

The website says it is ideal for some brain tumours in children.

http://www.christie.nhs.uk/about-the-christie/our-ambitions-developments/new-developments/proton-beam-therapy/patient-information/benefit.aspx

The NHS does not currently refer any children with brain tumours abroad, so it is obviously a need that is currently not being met by the NHS.

[Peter Pedant]

No of course I dont agree with propaganda you have meekly sucked from the internet.

If there is a scrombogulator and the owners and operators ( at £50k a pop ) say: " da. fee agree. scrombogulacion is clearly in ze leedol one's interests"

doesnt anyone think - er well it clearly is in the owners' interests. but that does not mean it is in the child's best interests.

and frankly hasnt anyone noticed that Malaga is not on the strada ( = way ) to Praha or is it only me ?

[Peter Pedant]

Slaney - as occurs so often the parents can talk about their child to the media but the doctors can't. And that is the rule EVEN if the parents have broken confidentiality.

The consultants' figure seem to be grouped for that tumour

The wiki article doesnt seem bad:
http://en.wikipedia.org/wiki/Medulloblastoma

[gness]

What confidentiality do parents break, Peter?

[ChillDoubt]

Just in from work and catching up, Sky News are saying he(Ashya) is a ward of court and cannot be removed form the hospital? Just W T F is going on???

[Eve]

I think there is still much about this case that we don't know about, the doctors can't go disclosing all kinds of medical and other information about a vulnerable minor to the press just because people want to know.

I just wonder if there was more to the response being triggered. I know the parents turned out to be very well prepared which the hospital couldn't have known at the time. I imagine they would have been vilified if the story had had a different ending.

It could set a worrying precedent, especially if people aren't as clued up and prepared as these parents seem.

I'm not saying their response may not have been wrong or over the top, I just think there is a lot we don't know.

[Peter Pedant]

it is well know Gness that medical details are confidential
It is also well known that parents talk to the media about their kids' medical condition - such as he has medulloblastoma and needs chemotherapy and or possible radiotherapy
and the doctors are not ( allowed to comment in this way )

all these statements I have made are not contentious and occur commonly

[gness]

I know that....about doctor patient confidentiality, Peter....I just didn't know that we as parents/carers are bound by some rule too.....Lord I must have the record for breaking them.

[Mamyalynne]

The parents have not breached confidentiality though, any patient (or in this case parent of) is allowed to tell the world their medical history.


You are correct that the Doctors are more restricted in this of course.

[Eve]

Given the high profile nature I also wouldn't be surprised the hospital is very limited in what they are being allowed to say by their legal department etc...

[Gromit]

// doesnt anyone think - er well it clearly is in the owners' interests. but that does not mean it is in the child's best interests. //

The PBT company are going to charge a fee for this (I did hear they were doing it for free, don't know if that is true). Other children have had this procedure for brain tumours, but not on the NHS. Other countries besides Czechoslovakia perform this procedure.

I realise this is a private company who want to make money, but to suggest they will perform an unnecessary or wrong procedure on a very sick child, to boost their profits, is a bit far fetched.