UKC

Ashya King

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 icnoble 03 Sep 2014
Whilst my heart goes out to Ashyas parents I think they were wholly irresponsible in taking their son to Spain. One of the reasons the specialists in Southampton were concerned was that the the Kings forgot to take the power plug for the gastric feeder. It runs on batteries as well but they would have run out. If it had been me I would have left my wife at Southampton and I would have gone to Spain to sort out the sale of the house there.
 ByEek 03 Sep 2014
In reply to icnoble:

It is so easy to judge the motivation of people, especially when all we know about this affair has been spun by vested interests and the press. And naturally those who judge have absolutely no experience of the sort of decisions these people have to make.

I take it you have been in a similar situation?
OP icnoble 03 Sep 2014
In reply to ByEek:

No I have not. All I am saying is that one parent could have stayed in Southampton.
 Trangia 03 Sep 2014
In reply to icnoble:

They are desperate. I can't imagine what it must be like to have a dying child, wouldn't to clutch at anything, even snake oil in such circumstances if you believe the doctors are not trying everything? Logic doesn't come into it.
 neilh 03 Sep 2014
In reply to icnoble:

Any treatment involving a so called " Proton beam" sounds a bit wacko to me, reeks of something from a Star Trek Film or Thunderbirds.

I have alot of sympathy with the NHS/police on this -- you cannot win.
 ByEek 03 Sep 2014
In reply to icnoble:

> No I have not. All I am saying is that one parent could have stayed in Southampton.

Agreed. But one parent didn't stay in Southampton. So what can we conclude? We don't know anything about this. We don't know what had been said at the hospital and we don't know why the parents felt that they were not getting the best treatment options. So we can't judge because we don't have the full picture and we aren't them. People do strange things when put in difficult situations. It is almost impossible to rationalise such decisions.
 elsewhere 03 Sep 2014
In reply to neilh:
Proton beam physics is no more wacko than ye olde x-rays or radioactivity.

I suspect proton beams dump their energy at the end of their track rather than along the length of the track so it offers better targetting.

Desperate parents and NHS/police alike, no winners.
Post edited at 11:06
 tony 03 Sep 2014
In reply to neilh:

> Any treatment involving a so called " Proton beam" sounds a bit wacko to me, reeks of something from a Star Trek Film or Thunderbirds.

I thought that when I first heard it, but apparently it's legit and is recommended and funded by the NHS in certain situations. One complicating factor is that there are no UK centres offering the treatment, so NHS patients do have to go abroad for it, usually the USA.

> I have alot of sympathy with the NHS/police on this -- you cannot win.

The whole thing does sound really desperate all round. One article I read yesterday suggested that the parents had lost trust in the doctors at the Southampton hospital, who were trying to have the child made a ward of court - must be a horrible situation for parents who want the best for their child, and very difficult for the medical staff.

JMGLondon 03 Sep 2014
In reply to icnoble:

Awful and desperate situation for the parents. I don't understand what crime had/has been committed to warrant such a high profile man hunt, and subsequent incarceration.
 Dave Garnett 03 Sep 2014
In reply to icnoble:

> It runs on batteries as well but they would have run out.

Hmmm. Although this was the story first put out by the hospital and the clear impression given was the parents were completely irresponsible and hadn't a clue, it seems that this wasn't the case and they had a parallel set of equipment set up at home, including spare batteries etc. They seem pretty clued up to me.

I'm increasingly thinking this isn't a loony Jehovah's Witnesses denying sensible treatment story. It looks more like desperate parents doing all they can to get a particular treatment apparently denied to them (rightly or wrongly). Whatever the truth, having them dragged to court in handcuffs seems completely inappropriate.

Not the fault of the police, but I think someone over-reacted here and there's a lot of back-peddling in progress.
Post edited at 11:32
 dale1968 03 Sep 2014
In reply to JMGLondon:


> I don't understand what crime had/has been committed to warrant such a high profile man hunt, and subsequent incarcteration.

Its not difficult, they told a lie to the Hospital then disappear with a post surgery child.

The Police/NHS are not mind readers, what if there intent was to subject said child to harm?

They full well understood what they were doing was wrong, only with hindsight does the subsequent action appear OTT
JMGLondon 03 Sep 2014
In reply to Dave Garnett:

Yes I think the JW angle gave the story legs at the start - which is quite shameful really. There must be other examples of parents taking children out of NHS care to seek treatment abroad, without causing a press storm.
 Dauphin 03 Sep 2014
In reply to neilh:

2 machines coming to the U.K. next year. One at Christie's in Manchester another at UCLH in London. World leading cancer treatment centers.

D
JMGLondon 03 Sep 2014
In reply to dale1968:
> Its not difficult, they told a lie to the Hospital then disappear with a post surgery child.

It is difficult because I don't understand the crime which lead to the parents being taken away from their child in Spain?
Post edited at 11:38
 balmybaldwin 03 Sep 2014
In reply to JMGLondon:
> (In reply to icnoble)
>
> Awful and desperate situation for the parents. I don't understand what crime had/has been committed to warrant such a high profile man hunt, and subsequent incarceration.

The parents removed a child from a hospital where he was receiving life supporting treatment. They did not tell the hospital what they were planning, and therefore left the hopsital with no option but to alert the police that they felt a child was in danger.

The police then start their proceedures for locating a vulnerable child on the basis that they had left no information on where they were going or what their intentions were, but had boarded a ferry to Europe.

Exactly the same proceedure was used when that teacher went off with his underage girlfriend last year. In his case it was under a suspicion of abduction. in this case, endangering a child.

It's clearly not what a clear thinking family would do, but possibly understandable in these circumstances. I understand they were desperate to try this new treatment (despite being advised it would make no difference in his case by doctors and being offered a second opinon), but setting off with the intention of sitting in Spain (where this treatment is not available) waiting for their house to sell for a few months is quite frankly bonkers, and clearly not going to help the child.

The cynic in me says the family have been mighty savy in exploiting this to their advantage to the extent it could almost be a planned publicity stunt to get this treatment paid for by donators.

I can't see why they didn't go for the tried and tested approach to appear on BBC breakfast TV appealing for help to get funds for some specialist treatment (which nearly always seems to work especially for rare cancers etc.). Perhaps because the qualified experts (doctors) in this case didn't agree that it would help?

I think it is particularly poor the way all the politicians (including senior police politicians) have re-acted to this. For example sending out our most senior oncologist to pander to them - what about the rest of his patients?

Quite frankly it sets a precedent - if you don't agree with the doctors then all you have to do to get your way is abscond with the child to another country and then make a fuss about how unfair it is
 SAF 03 Sep 2014
In reply to icnoble:

One of the major side effects of brain radiotherapy on children (particularly younger ones) is learning difficulties of varying severity.

So what you have is parents faced with a child that is definitely going to die without treatment, still got a chance of dying with conventional treatment, but if it does survive the treatment will have lifelong problems, and probably not be able to support himself through life. OR the offer of a treatment that may not be as proven at achieving "quantity" of life but "if" it does work would offer the child less long-term side effects and more chance of a fulfilling life.

Everybody has a different view of what is more important.. quantity or quality of life, and who are any of us (ukc forum, hospital consultant, high court judge) to say what is the right balance. Leave it to the parents to decide what is the right treatment for their child.
 balmybaldwin 03 Sep 2014
In reply to JMGLondon:
> (In reply to Dave Garnett)
>
> Yes I think the JW angle gave the story legs at the start - which is quite shameful really. There must be other examples of parents taking children out of NHS care to seek treatment abroad, without causing a press storm.

Plenty of them... normally with a bbc backed campaign to raise funds, and support from the medical profession. (The difference here was they weren't leaving to get treatment, they were leaving to go and sell their house (not a short process)
OP icnoble 03 Sep 2014
In reply to icnoble:

The specialists at Southampton seriously looked into the possibility of proton therapy and concluded that in this case it wasn't a viable option. Independent opinions were sought as well. A friend of mine works in a paediatric unit in the North West and quite a number of children have had the treatment but many were turned down as the specialists deemed it as a non suitable treatment. Proton beam therapy is used in America to treat prostate cancer and it appears that there is no evidence that it has better or worse outcomes than traditional radiotherapy.

 mypyrex 03 Sep 2014
In reply to neilh:

> Any treatment involving a so called " Proton beam" sounds a bit wacko to me, reeks of something from a Star Trek Film or Thunderbirds.

I'm sure you would have said the same about this a few years ago:
http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web...
 toad 03 Sep 2014
In reply to icnoble:

The thing that always impresses about cancer treatment is the depth of consultation that goes on between the various oncology units before deciding on treatment. This wouldn't have been one doctor deciding that this was inappropriate, but I suspect that the team/ doctor dealing directly with the family might not have been the best communicators.

There also seems to be a discrepancy between the parents finely honed google skills and the oncologists.

Inevitably the media are also partly culpable. We have gone from "FIND these EVIL parents to save this ANGEL" to WHY did these EVIL doctors not treat this ANGEL" full story with pix on pages 1,3,4,5,6,7. All in the space of a few hours.
JMGLondon 03 Sep 2014
In reply to balmybaldwin:

> Plenty of them... normally with a bbc backed campaign to raise funds, and support from the medical profession. (The difference here was they weren't leaving to get treatment, they were leaving to go and sell their house (not a short process)

Sure - there are public campaigns but there must be cases we don't hear about where parents and medical staff disagree on a course of treatment and parents seek treatment elsewhere - as is there right, no?

I take your point about medical staff in this case following procedure and police instigating a search - but removing the parents from the child's side seemed inappropriate and not in the best interests of any party.
OP icnoble 03 Sep 2014
In reply to icnoble:

This is a quote from an article i found on the internet.

The other alternative – mostly for adults and children with brain tumours – is to head abroad for proton therapy. It’s important to point out that at the moment, there’s a lack of good evidence to show that most people who get proton therapy abroad will do better than those who get conventional treatment here in the UK.
 Dave Garnett 03 Sep 2014
In reply to balmybaldwin:
> (In reply to JMGLondon)
> [...]
>
> The parents removed a child from a hospital where he was receiving life supporting treatment. They did not tell the hospital what they were planning,

This, and many other assertions made by the hospital are of course disputed by the parents. They seem very articulate so I find it quite hard to believe they didn't make themselves clear.
 neilh 03 Sep 2014
In reply to Dauphin:

Cannot argue with that........
OP icnoble 03 Sep 2014
In reply to icnoble:

I forgot to put the link from the article regarding proton beam therapy,


http://www.cancerresearchuk.org/about-us
OP icnoble 03 Sep 2014
In reply to icnoble:

A spokesman from Southampton has just been on the news and reiterated what was said yesterday evening. They were in discussion with the parents and Ashya was going to have the treatment in Prague despite the belief that he would not benefit. I hope that once the family are back in the UK this promise will be honoured. This will mean that the family do not have to sell the house in Spain.

Ashyas was taken on a 1500 mile journey described as horrendous by his Father. Can you imagine what would have been said had there had been an emergency en route and Ashya had died and the hospital had taken no action when they realised he was missing. The press would have had a field day. In this case I think the hospital had no choice but to alert the authorities.


 neilh 03 Sep 2014
In reply to icnoble:

It was the authorities only choice to trace them via issuing an international warrant once the parents had left the UK. There was no other way of tracing them legally.All this press talk about having other options is a waste of time.In the UK maybe there were other choices.

In reply to icnoble:

> One of the reasons the specialists in Southampton were concerned was that the the Kings forgot to take the power plug for the gastric feeder.

And no doubt the feeder had a plug that was utterly unique to it.

And not one you could easily find in your local Poundland. For a pound.

The story as I read it is that the parents got increasingly frustrated at the arrogance and limited treatment options available on the NHS, and decided they could get better treatment elsewhere. The hospital got the hump, and cried 'foul', coming up with all sorts of bollocks like "they didn't take the power lead" and "he was receiving life-supporting treatment", when actually they had a power lead, and the child was in no immediate threat of death for lack of treatment.

I note that the hospital almost immediately issued a statement expressing regret for the "breakdown in communications".

I also note that the 'no clinical need' for extra-NHS treatments is often a cover story for "we don't want to spend that much money". Clinical need and budget constraints are now blurring (having seen an example of this first hand recently, although in that case, the patient's consultant said there was a clinical need, but the ward the patient had been put in (by the hospital, not by the patient or the consultant) didn't have any budget for that treatment, so the patient simply did not get the needed treatment).
OP icnoble 04 Sep 2014
In reply to icnoble:

Despite the specialists belief that Ashya will not benefit from the proton therapy the treatment will be funded by the NHS. I hope that this decision will not deny a child who, in the opinion of his/her medical team needs it. But to subject a seriously ill child a horrendous (not my description but that of his father) 1500 mile journey beggars belief. What if the car had broken down. As I said in in my opening post the parents were wholly irresponsible.
OP icnoble 04 Sep 2014
In reply to icnoble:

I would also like to add that had I had been interviewing the parents on behalf of the BBC I might have asked Mr and Mrs King, in hindsight would it not have been wiser if one of you had stayed with your son in Southampton.
OP icnoble 04 Sep 2014
In reply to icnoble:

Just to reply to your post Mr Paranoia, i took the trouble to google Proton Beam Therapy and one of the links that came up was Cancer Research UK. This is a charity that funds research into cancer and its treatment. Even they say that (and I quote again from their website) The other alternative – mostly for adults and children with brain tumours – is to head abroad for proton therapy. It’s important to point out that at the moment, there’s a lack of good evidence to show that most people who get proton therapy abroad will do better than those who get conventional treatment here in the UK.

 SAF 04 Sep 2014
In reply to icnoble:
> there’s a lack of good evidence to show that most people who get proton therapy abroad will do better than those who get conventional treatment here in the UK.

But define 'do better'. In the Uk health system we are obsessed with the notion of quantity of life, often over and above quality, with 'do better' defined in 5 year and 10 year survival rates, these rates don't necessarily reflect the resulting quality of the patients life. The obsession with quantity of life over quality of life is not something that is not reflected across all countries.

Conventional radiotherapy to the brain of a young child can have disastrous effects for the future of that child as a functioning, contributing member of their community, some might say that that is not a quality of life they see as satisfactory for their child.

This family have opted for a treatment that is thought to have much less impact on the surrounding brain tissue, with the downside that there is a lack of evidence for its effect on overall survival rates. That is a choice for the parents to make and them only.
Post edited at 09:34
 MeMeMe 04 Sep 2014
In reply to icnoble:

> I would also like to add that had I had been interviewing the parents on behalf of the BBC I might have asked Mr and Mrs King, in hindsight would it not have been wiser if one of you had stayed with your son in Southampton.


I don't think you are putting yourself in their shoes.
People get scared by the power the authorities have over their children. There's a great sense of powerlessness in hospitals where the doctors and nurses take over control of you and your child's life on a minute to minute basis.

They were scared they wouldn't get the chance to do the best for their child because the authorities would take that choice (and possibly their child) from them, so they decided to get the hell away.

The doctors are not always right, they have their own priorities, motivations and agendas just like anyone else, the family were just trying to do the best for their child in the situation they found themselves.
 Mr Lopez 04 Sep 2014
In reply to SAF:

Spot on.
OP icnoble 09 Sep 2014
In reply to icnoble: this artical is worth reading. It is not from the sensationlist Daily Mirror, but from the Independent.



http://www.independent.co.uk/life-style/health-and-families/health-news/ash...

I have felt from the beginning that the specialists at Southampton have been overly criticised regarding the treatment of the King family and I believe that the article in the above link has given a more balanced view. I have every sympathy with Ashyas parents, it is a terrible situation to have to deal with. I have always believed that the specialists at Southampton put Ashyas care first which is why they alerted the authorities of his removal by his parents.

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