Little boy has been removed from hospital by his parents

[Itsfab]

He is very sick, needs constant treatment. His parents have taken him to France.

I don't understand why the hospital didn't notice or alert the police for 6 hours.

The police won't comment on the parents being Jehovah's Witnesses.

It sounds wrong when the statement said he was removed without consent. The child is theirs, should be allowed to be in charge of him, but of course it is he that will lose his life if not cared for and that isn't in his best interests necessarily.

I hope he is found and can be cured.

Informative article here

Veritata,

Yes this is not a curative treatment but rather a preventive measure to reduce risk of further recurrence and not just all the brain but also all the spinal cord must be irradiated. But see comments of Prof Marcus below.

Rafa,

Here are both the sides of debate between two Profs of radiation oncology on a specialist Blog. The argument for the use of proton comes from the prof who runs one, not a paediatrician. MassGen and Harvard are better known and the view point is from a paediatric radiation oncologist. The article is 4 yrs old, not found anything more recent.

www.proton-therapy.org/hemonctoday_82520.html

FWIW, if it were my ds I would have been very happy with treatment as planned in Southampton. I can see the theory behind the argument for a small benefit for proton but cannot see that it would outweigh the advantages of local treatment and especially if it involves travel to a foreign state with language and cultural problems.

His family may well speak more than one language - Ashya was born in Spain and his mother has a non-standard English name. So travel abroad may be less of an off-putting thing for them than it is for many people. Maybe the Czech hospital has great translation services.

I'm not sure whether there is any benefit to proton beam therapy in Ashya's case but it's not down to me. It's a crying shame the hospital and the parents were unable to work together but it's clearly been very badly handled by the hospital and then the police.

"it's clearly been very badly handled by the hospital and then the police."

I'm not sure how this can be so blithely asserted. I think the unwavering certainty people have, that Ashya's parents version of events is correct and that they were completely reasonable to withdraw him from hospital and drive him across Europe, sets a worrying precedent.

Drat and Nerf - thanks.

I didn't say his parents were perfect either. But the hospital and police misled the public and set in train a series of events that ended with his parents in gaol, which is clearly not in the child's best interests. As has now been recognised by the courts.

The breakdown in communication was a disaster and is at least partly the responsibility of the hospital.

I still unclear as to why information about the parents' religion was thought relevant, and who put that into the public domain and for what purpose? The fact that someone in authority thought it was relevant did initially have the effect of implying that they were eschewing treatment for the child.

I presume this will be investigated by the Safeguarding Board.

The father at least speaks fluent Spanish.

Oh, I'm sure the safeguarding board will say all the authorities acted entirely correctly. Even where these boards have to admit to fuck-ups, they always claim 'it wouldn't have saved X or Y's life or changed what happened anyway'.

I'm sure the Rotherham safeguarding report would have insisted everything was fine there too - in fact it must have done, otherwise someone would have noticed industrialised child abuse going on for decades.

It was only victims, their parents, and journalists who listened to whistleblowers and got hold of suppressed reports who revealed what was going on in Rotherham. (Mainly one journalist at The Times who kept pursuing the story.)

The whole dreadful affair was a communication disaster from the start IMO: likely between the treating medical team and the parents to start off with, then between parents (and their wishes) and the medical team, then medical team and the authorities, then the media got involved….

None of the above will have helped the little boy in questions and will have caused untold distress to his family and those involved in his care.

I agree there's been serious miscommunication, but I agree with those who ask what on earth else the hospital was supposed to do once he disappeared, and I haven't seen an adequate answer.

But he didn't 'disappear'. He was with both patents.

Parents, sorry.

He did disappear from treatment with people who weren't able to give him any food. It would be ridiculous for the hospital to ignore this. The parents shouldn't have been arrested as that meant the child was left alone, but the authorities had no choice but to pursue them to try to ensure Ashya's safety. The hospital were pursuing the best proven course of treatment as far as they were concerned. I find that hard to criticise.

Proton therapy is not proven to be any less damaging than normal radiation when treating medulloblastoma, and travel is not recommended for these patients, especially suffering from complications like Ashya's.

He didn't 'disappear'.

But the problem I have with the 'but maybe the parents aren't telling the whole truth and the hospital has a point' camp is that this matter has now been exhaustively ventilated before a high court judge who has agreed that the parents were within their rights to act as they did and were acting in their child's best interests.

If the court hadn't decided that, the wardship would have continued.

The reason I am so angry with the hospital is because - as Mrsdevere has constantly pointed out - they fed a story to the media that he was going to starve because the battery on his feeding unit was running out.

If the hospital were really so worried about these parents and their ability to care, why were they allowed to take their son out of hospital for hours at a time?

If the hospital were worried, then yes they had to take action. But they had a duty of simple compassion not to over egg the pudding, lead the police to believe the parents were willfully putting his life in danger so that the parents were locked up for days and their son was alone.

For a five year old that must have been an appalling ordeal. And the blame for that lies with the hospital for pushing an over hyped and exaggerated story of risk at the outset.

Spero they were taking him for a walk in the grounds of the hospital, that's not being out with him for hours at a time.

As far as the hospital knew, when his parents took him, they had no NGT training or experience and only the feed and feed machine he was with.

There was no way the hospital could have known the parents had purchased feed and a feed machine.

The hospital were acting on the information they had at the time.

What else were the hospital supposed to do? Shrug their shoulders and say everything will be fine?

Here is the full court ruling:
www.familylawweek.co.uk/site.aspx?i=ed132257

It in no way blames the hospital and says that both they.and the local authorities were right to consider that Ashya was at risk.

It certainly does not say the hospital overhyped anything.

I think the media over-hyped rather than the hospital. The original statement seems to have been quite balanced.Somehow it managed to get turned into we need to find Ashya today because of the issue with the battery.But I'm not sure that was the sole focus that the family court and CPS were working on when they made their decision.

That court ruling makes interesting reading. Why did Southampton refer to the NHS proton therapy board? Does anyone know if that is standard if seeking alternative treatment? AFAIK that would only be required if seeking NHS funding. Which does call the 'evil hospital refusing parents choice in treating their son even though they are paying' angle of the story into question slightly.

the problem is, we only know what we read. thus we are at the mercy of sensible reporting - which is often in short supply. I had read they were able to leave the hospital grounds for hours at a time. If that is wrong, then some of my ire is misplaced.

But lets look at it another way.

Just how bad was the relationship between the parents and the hospital that the hospital were apparently so ignorant of what the parents could or couldn't do to keep their child alive? The parents were clearly perfectly capable. Their child came to no home whatsoever on the journey to Spain and was moved out of the HDU in Malaga very quickly.

What seems clear to me is that the relationship between the parents and the hospital had deteriorated to such an extent that the parents felt they had no option but to do what they did. When the father says he was threatened with care proceedings - I believe him. And that was an appalling thing to do.

sorry, hit post too soon. what I wanted to go on to say that the responsibility for that detoriating relationship must lie primarily with the professionals. The parents are in a horrible situation with a probably terminally ill child. If doctors can't handle that with some degree of sensitivity then they should re think their profession. And from how the parents and their wider family have handled this, I can't believe that it was the parents contributing the larger share of responsibility for relationship breakdown.

Disclaimer: I have no doubt that a lot of my anger is from my own issues with doctors and my first hand experience of their contempt and unkindness. the majority of nurses and doctors that I had dealings with in the 1980s did not seem to like people very much at all.

I thought things had improved, but maybe not.

Yes, irretrievable break-down of trust and functional communication is at the heart of all this.
I find myself entirely unable to 'take sides'. Other than feel that 'there for the grace of god, go I'. And heartbreak for Ashya and his whole family.

Is it really that unusual for parents to disagree with the hospital and remove their child? In a population of 60 million, this happens rarely enough to make it headline news?

I think it does happen very rarely as people are usually too shell shocked to do anything other than agree with doctors.

But I can see this has all the hall marks of the Forced C Section case.
www.independent.co.uk/voices/comment/ashya-king-this-story-isnt-quite-what-it-seems-9716486.html

Why o why o why does everything have to be this way? I think my moral outrage pendulum may be now swinging back to journalists.

So who did tell the press they were JW, if it wasn't the hospital (as the linked article claims)

Spero - the hospital were not expecting Ashya to be discharged, the plan was for him to have several weeks of chemo. Therefore it is unlikely that the hospital had done any home care training of Ashya's parents for any care Ashya may need when discharged.

You can't as a professional, assess a parent as competent in a clinical skill, if the parent has not been taught that clinical skill, nor been witnessed the parent doing it.

You can't assume someone is competent and the hospital is quite right not to have made that assumption.

Yes, Ashya was OK, but things can go wrong, the judgement makes particular notice of his absence of a gag reflex, things could have gone very wrong here.

As for Ashya not staying in HDU for long, he wasn't in HDU in the UK, just on an oncology ward, he's stable awaiting treatment, but he has been transferred directly from a Spanish hospital to a Czech hospital.

With regards to communication at the hospital, when having important conversations with parents, it is best to always ask the parent what they've understood from the conversation, so you can be that you are both in agreement as to what has been discussed and what you both understand has and will happen.

The thing is, we don't know the conversation, in terms of what was said and how. If the conversation was as heated as Mr King says, the hospital should have taken action to resolve that, arranged a multidisciplinary meeting with the Kings to go through all the options and explain all the possibilities.

Questions will be asked as to whether those involved in Ashya's care were aware of the extent to which trust had broken down and how they hoped to deal with that.

Sorry Spero, it took me so long to get round to pressing post, I missed your last post.

Media coverage always seems to be more of curse than a blessing in such cases, I would agree.