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.

Sorry, MrsD, I know that wasn't your position, it was someone else that mentioned spite.

'Ashya is in a wheelchair and is fed through a tube. The feeding system is battery operated and that battery will run out today. The information that we have from his medical team at SGH is that he must continue to be fed via a tube by someone with the relevant medical training. If he doesn't receive urgent medical care or the wrong treatment is given his condition will become life threatening.'

That's the part of the statement from Friday that deals with the feeding tube issue. It's possible that something else was released later that afternoon that I haven't yet found. I don't get the feeling that they are 'pushing' the battery issue and I'm not sure that 'someone with the relevant medical training' and 'a medically trained person' are quite the same, although I can see how one can easily turn into the other. They might have overegged the pudding with the urgent medical care but that's difficult to know without all the facts.

I suspect that SGH might not be entirely blameless and the fault will lie between both parties involved. But I'm not sure it's any more fair for social media to blame SGH of this level of misconduct than it is to blame the family. Particularly since none of us have the facts and 2 of the doctors involved in Ashya's care have been quite publicly named.

Yes doctors fuck up, cover up and intimidate. God knows I'm personally aware of that but that doesn't mean that these ones have.

Nobody behaved perfectly, but I expect a much higher standard of behaviour and competence from the various professionals whose full-time job this is and who should not be in an emotional state

It is always likely that desperate parents, facing this situation for the first time in their lives, will panic if they feel the professionals are steam-rollering them. Most lay people are nervous about courts.

I expect from professionals:

. Don't use the law as a "frightener". It increases the likelihood of panic.
. Calm measured actions, continually reviewed for proportionality. MrsDeVere's suggested statement was very reasonable
. As accurate information as possible, with correction of anything misleading or outdated
. Do not leak religious / sexual / political orientation just to gee up public cooperation / prejudice

Religious affiliation is confidential and protected information, which I would be outraged if any professional has leaked to the media.

I've read all the threads and followed the news and social media but not commented (mainly because I didn't think I had much to contribute) til now. I don't want to regurgitate the thread particularly because I agree with many of the views but what I like to add to are some of the points raised previously.

The breakdown of communication between the medical team and the parents (to me anyway) seems to be at the centre or start of this and in some ways I can see how easily this happens.

Now I don't know what was or wasn't said or how it was portrayed in this circumstance but I remember sitting with my dm when she was given her terminal cancer diagnosis and we completely misunderstood what we were being told- not because we didn't understand the medical jargon or how it was put (and it was put very kindly) or it wasn't thorough but because emotionally we just couldn't process it and it took 3 more meetings with the consultant and questioning and looking for alternatives before we took it in. (As an aside we had 40 years of nhs experience between us but when you're the patient or relative it's a whole different ball game because you are emotionally involved and can't step back or away from it. ) We weren't wrong but neither was the consultant - it was just process we went through to take that information on board.

I can't imagine what that would be like hearing that news about your child - it isn't surprising they felt that had to take the steps they did if they felt they weren't being listened to or felt threatened (whether that happened or not but clearly they did fear that) and I don't blame them at all for this. I would move heaven and earth for my dc as they have for theirs.

Once the family left the ward essentially someone somewhere raised a concern for the child. I don't actually think that this was wrong - child protection currently works on the premise that if anyone anywhere has a concern about a child ( and in this case a vulnerable child because of their illness) we all should share that concern and escalate it if we are not happy with the response. Too many serious case reviews throw up the same issues time and time again - people knew a small bit of information but did nothing with it and assumed things incorrectly. There have been several high profile cases where horrific situations arose because vulnerable families "disappeared" off the radar and no-one followed it up. Get it wrong with a concern that is unfounded and it perhaps does look like arse covering but reporting something that helps a child then it's not so much. The general message in child protection training is if in doubt do something not nothing. Assumations don't go down well with a scr board.

For me what happened next was where it snowballed - the information passed to the police, the police response and then ultimately what has unfolded leaving a small child alone in a foreign hospital. That for me is what needs investigating and processes reviewing. But we will wait and see and I hope the family and Ashya find the treatment and get the outcomes they hope for.

Sorry that was epic I didn't realize it was sooo long

Portsmouth councillor on Sky now saying that her council only applied for warship when it was clear the parents had been arrested therefore the council had to step in yo ensure care for Ashya.

She was asked who was taking the primary role in this? She was very clear that the agency leading this was SGH and said the family was not known to Portsmouth council prior to the parents arrest

The father is showing massive composure in the new conference. it's clear that he has a lot if catching up yo do in what's been going on while he and his wife have been imprisoned

Yes, the religious aspect should have warranted a very firm 'no comment' from them. It wouldn't have changed the reporting but the authorities were definitely in the wrong there.

And I totally agree with mrsD's statement. It would probably have been better.

I'm not sure the initial statement they put out was that wrong and there seems to have been the usual situation of what was said and what how the media are reporting what was said, not adding up to quite the same thing.

I agree that a statement like MrsD's would have been much more appropriate.

Sorry to harp on about the feeding issue but I think: 'The feeding system is battery operated and that battery will run out today.' is incendiary and designed to create panic. (And as said before, is also misleading, as it implies the only way he could be fed is through the 'feeding system'.)

Agree that NG tube becoming dislodged is more of an issue. But maybe they didn't bargain on an international manhunt. Maybe they thought they might be able to go to a hospital and have it replaced, should it become dislodged. Maybe, they even had training to do this. Parents are trained to place NG tubes.

Some things that strike me after all of this:

Their religious affiliation was at some point released by someone. It seems to have been done to smear them as irresponsible religious loonies.

If I were a JW, this case would worry me immensely. It would make me worry that, should my child be seriously ill, my religious affiliation would mean I was much less likely to have my views and input into their care taken seriously. I know some JWs. They have some eccentric views on blood products and the nature of the Trinity. But they are by no means some wacked-out anti-medicine cult nor is it inevitable that they will decline blood products, particularly for children. For all we know the Kings may have accepted blood product use in Ashya's treatment so far. This could very seriously damage trust between British JWs and medical staff.

I also don't understand at all the medical team's reaction to the Kings seeking private proton therapy. It's unusual but not illegal to seek care for serious conditions outside the NHS. Plenty of people have taken very sick children abroad to have non-NHS treatment, some of which is no better than snake-oil. There was a programme about GOSH where some parents took a chid with cancer to some dodgy "clinical trial" in the US that had been running for 20 years. GOSH advised against it but didn't slap a court order on them. This, and the later way in which the information about the feeding pump was extremely misleading, makes me think that someone in the hospital essentially wanted to punish the Kings for daring to seek care outside the NHS.

I think it was appropriate that concerns were raised after Ashya didn't come back to the hospital. But it also seems to me that the police and council didn't ask enough questions of the medical team and didn't engage their brains by thinking about what kind of action was necessary. The police could simply have put out an appeal saying 'please contact us to reassure us you have feeding supplies, can work the pump, and will seek medical help if the NG tube becomes dislodged.' Nobody took a minute to think about the fact a successful extradition procedure would mean Ashya would be separated from his parents for weeks on end.

The Kings are very lucky they had some children who were not minors and who knew how to do social media. Otherwise they would have had no way of getting their story out and all of their children would now be in care. Danny and Naveed are obviously caring, bright, articulate young men who their parents should be extremely proud of. It's awful that it was made so difficult for them to get access to Ashya in the Spanish hospital.

I don't think the State lurks round corners waiting its chance to snatch children from their parents. But if I worked in child safeguarding I'd be furious with the mismanagement of this case because such terrible abuse of power will damage public trust in the State with regard to child protection.

SGH on the radio right now - the Senior Paediatrician

Agreed that Ashya was stable at the time he left.

Said they would refer to Prague for PBT - if the parents paid privately as (according to him private funding is standard practice) Really?

Did agree that parents had been told the hospital could apply for Court Order if parents refused their proposed treatment.

Really - this is becoming a very unedifying spectacle as SGH sends out new players with new spades.

What parent is going to want their child receive treatment at SGH?

I heard the father on Radio 4. He says the child is very sick (I think originally the papers said the boy was dying hence at the start my view was parents should have a choice on what treatment is given which may only extend life if doctors agree there is no hope and the place of death - I still believe that should be the law).

The report said the Czech clinic will treat him with proton beams (if the money is raised) but only after 2 courses of chemo first (this avoids the radiotherapy). So I am not sure if this is a case about who decides death management, place of death etc or whether any of these treatments at all could cure him. Do we know?

I think the older brother in particular has managed so well with his younger siblings whilst the parents were in prison.

Agree with you Gimme, I certainly wouldn't want a child treated by neurology or oncology at Southampton General. Far too likely to reach for draconian measures that harm parents and children rather than trying to work with families, or mislead the police and the courts.

As many people have pointed out, there were other, more reasonable ways the hospital and police could have checked on Ashya's welfare, rather than having the parents chucked into prison.

I think I vaguely remember Southampton General has a bad rep anyway or something, but may be being unfair. Or did they try to merge with another trust and get knocked back? At any rate, I wouldn't judge the whole hospital by one doctor or department.

Greenrow last night on the news it was said he has a 70-80% chance of survival for 5 years. This was completely different from what I had previously understood and is certainly not death management, on this information they are going for a cure. Heard someone on radio 4 at lunchtime saying the Prague machine is old and not state of the art and they should go to the US.

Hurrah, he's with his parents! www.bbc.co.uk/news/uk-england-29050499

How on earth did the hospital "have the parents chucked in prison"?

The child went missing, the parents were uncontactable, the hospital called the police.

Would you seriously want the hospital to do nothing?

I don't think the hospital being concerned as to how the child would be fed is scaremongering.

The hospital had no idea the parents had any extra equipment and the parents were not NGT trained. NGT feeding has risks, most notably that of the feed being aspirated, if the tube becomes dislodged or is re-passed incorrectly. To be clear, feed aspiration can cause death. From pictures, the tube in situ was a standard NGT tube that needs replacing every 5 days or so.

Finally, once the hospital had passed matter over to the police, the hospital have no influence on what the Spanish police should do.

So again, how did the hospital "have the parents chucked in prison"?

And, would you really like children to be removed from hospital and go missing without anyone checking that all is well?

Yet the father said during today's press conference that Ashya doesn't have many months to live.
Strange.

It is strange winnybella, it was the spokesman for the hospital who said it.

Ipity on this thread and the other it has been explained repeatedly that there were other far more reasonable options available to the hospital. They knowingly misled the police and public re. the feeding system.

I don't know whether it was the police or hospital or both who were responsible for obtaining a European arrest warrant requiring the parents to be extradited and obviously separated from their child, leaving a very ill boy presumably suffering considerable distress, alone in a strange environment with strangers who do not speak his language.

Plenty of lawyers are quoted in the media saying that was of dubious legality as no crime had been established, let alone an investigation completed.

The police could have sought a different kind of warrant that would have required the parents to present themselves and Ashya and reassure the authorities about his welfare.

They could have appealed along the lines suggested by MrsDV, making it clear the only concern was Ashya's welfare and that they needed reassurance, not making the parents out to be an immediate threat to his life.

The authorities concerned are now backtracking and blaming each other - if the case was so watertight, why do you think they are doing this?

The hospital had no way of knowing that the family had an extension lead, so I imagine they would be concerned about battery life. As far as the hospital knew, the parents had no method of feeding him once the machine's battery died, or if any problem developed with the NGT.

Edam - why would a hospital have any say in what sort of arrest warrant was issued?

Also, what action do you think the hospital should have taken on noticing he was missing and the parents were uncountable, other than to call the police?

Finally, I don't think for one minute the family ever intended to cause him any harm, but I think driving him across Europe was extremely risky, I think the hospital were right to flag that up and to think that he might be in danger.

Again, he disappeared. Neither the hospital, nor the police had any idea where he had been taken, or why.

"WOULD have known the family were more than resourceful enough to have obtained one."

How? How on earth could the hospital have known that for certain?

That isn't a would at all, it's an assumption at best, with serious risks to Ashya if that assumption was wrong.

with serious risks to Ashya if that assumption was wrong

Manual feed with a syringe, easily obtained in many pharmacies.

No risk to Ashya.

What if the tube is blocked? Can they repass an NGT? Have they got the equipment to check the tube is in the right place? What about when the tube needs replacing anyway?

What rate was the feed going at? If you're on a pump feed it's usually a big pack of feed, connected via an extension set, directly to the NGT and runs over night, so it's running a very slow rate, to not overload his digestive system and the feed stays sterile while it's being administered.

Manual feeds with a syringe are usually when you have one lot of feed to give, over a fairly quick period of time.

Trying to do this with the amount of feed Ashya was on would run the risk of contaminating the feed (particularly when it's open to the air in a hot country) or of overloading him.

As for syringes - not all syringes fit NGT's (as a safety measure many standard IV/Luerlock syringes won't fit NGT's now), they aren't necessarily easy to obtain from any pharmacy.

So trying to give a big feed pack manually would pose a risk to Ashya.

I have read this thread with interest, and the key issue here is that the parents felt that they were being threatened with the child being made ward of court by the hospital, if they refused to consent to what the hospital wanted. The hospital consultant did not engage in helping them seek treatment elsewhere. They were being bullied.

So in fear of their child being damaged by the treatment proposed, or taken away from them if they did not consent they decided to leave. The way the hospital acted next, is an indication of their attitude, in that they 'sexed up' the risk to the child, throwing in the religious beliefs of the parents, to mislead other agencies on the level of risk, in order to ensure they got what they wanted through police action.

As has emerged. The police had no basis whatsoever for extradition proceedings. This was supported by a number of legal academics who debated this on newsnight before the parents were released. The hospital team's actions have caused cruelty to the child and anguish to his parents as well as massive damage to their own reputation. There will now be an enquiry and I would expect the parents may sue, if only to prevent the hospital doing it again.

Nobody wins