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Little boy has been removed from hospital by his parents

886 replies

Itsfab · 29/08/2014 13:42

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.

OP posts:
Icimoi · 02/09/2014 11:08

"Doctors do not think this [proton beam therapy] is the best option for Ashya." No Sarah, Doctors don't think it is the best option for them. They are saving their proton pounds to spend on other children, with different tumours, different cancers and different chances.

But how can that be the case when the parents said they were willing to pay? Surely if the doctors thought it was viable they would have been delighted that all the expense of the treatment and all his hospital care would be off their budget?

BlackSwan · 02/09/2014 11:09

The plans are for Manchester (the Christie Hospital) and London (UCLH) to get proton by 2018.

Yes, Greengrow. Proton is better for IQ outcomes: www.sciencedaily.com/releases/2013/09/130923092228.htm

DuelingFanjo · 02/09/2014 11:09

Hakluyt

in what way is the Neon Roberts case a completely different case?

I know that the main difference was that his father agreed with the doctors but the treatment the mother was seeking was the same and she took her son away without permission in just the same kind of way.

DuelingFanjo · 02/09/2014 11:11

there's more info here about Sally Roberts seeking Proton Beam treatment.

Hakluyt · 02/09/2014 11:14

"But how can that be the case when the parents said they were willing to pay? Surely if the doctors thought it was viable they would have been delighted that all the expense of the treatment and all his hospital care would be off their budget?"

And in the hospital statement they said they were discussing treatment in other countries.

MerryMarigold · 02/09/2014 11:21

And in the hospital statement they said they were discussing treatment in other countries.

I assume that meant the father had requested treatment abroad, and then later requested their co-operation with his decision to go for treatment abroad. I'm not sure they did anything pro-active. They certainly haven't used the evidence of that to even slightly exonerate themselves, but I am sure this will all come out when the family (hopefully) sue the hospital.

I am not one for suing left, right and centre. Especially the NHS. But this whole situation takes the biscuit.

BlackSwan · 02/09/2014 11:22

Icimoi. The writer in the Guardian inferred from the doctors decision that it was not in the child's best interests. That's incorrect. You're being blinkered here. You assume the doctors would tell parents, 'yes, well, proton is superior to conventional radiation and your son does need radiation - but unfortunately as he has stage 4 cancer and may not survive, he doesn't fit our funding criteria. We won't spend the money as its too expensive for kids who may die anyway. Self funding is the way to go'. They are too arrogant for that conversation. Why? Because they think the parents are wasting their time trying to save their dying child with expensive treatment.

MerryMarigold · 02/09/2014 11:22

If I were a journalist, I would be asking the Czech hospital if they had had any correspondence with the SGH. And the rough content of it, if that is allowed to be disclosed.

TroelsNextCampaignManager · 02/09/2014 11:23

Greengrow I agree in many ways but was just pointing out to hak that the doctors may have decided it was not right for him based on financial as much as medical reasons.

The way some people (not so much here, thankfully) are saying that the King's aren't qualified to make a decision and only the doctors are, assumes that the oncologist has perfect knowledge and the financial freedom to make perfect choices - which is unlikely to be the case with an expensive treatment.

However - all that needn't have caused the current shameful situation of a sick child being without his family if - as Merry rightly points out - the hospital hadn't refused to consider the family's desire to undertake treatment abroad and therefore caused all this drama!

Hakluyt · 02/09/2014 11:26

As far as I am aware, Sally Roberts did not mention Proton Beam therapy when the case came to court in 2012. At that time, the treatments she wanted for her son were alternative/complementary therapies .She only mentions Proton Beam therapy in her more recent writings.

Hakluyt · 02/09/2014 11:26

"the hospital hadn't refused to consider the family's desire to undertake treatment abroad"

But according to the hospital they didn't refuse.......

TroelsNextCampaignManager · 02/09/2014 11:29

Merry I think it was reported that the Czech hospital has been contacted for the first time either yesterday or today by the Southampton hospital - you may wonder if that is so they can issue statements that are not technically incorrect regarding their handling of the case and their willingness to help the family access treatment abroad

DuelingFanjo · 02/09/2014 11:30

no

she was given 2 weeks to prove to the court that there were alternatives to the hospital's recommendations. Within that two weeks she was told about Proton beam therapy.

However it was then too late as the court ordered her son to have the existing treatment.

Even when she was able to show that proton therapy would be a good alternative she was vilified in the press and on forums as some whacko.

At the very least it would be good manners for people to say 'hang on a minute, that Sally roberts wasn't such a nutjob after all'.

I think this case highlights a great deal of prejudice and misogyny that happens in cases where women are branded as crazy, irrational and unstable parents.

Icimoi · 02/09/2014 11:32

Icimoi. The writer in the Guardian inferred from the doctors decision that it was not in the child's best interests. That's incorrect. You're being blinkered here

Why, BlackSwan? The post I was answering stated that the reason the child hadn't been referred for PBT was solely financial. I asked what financial motive there would be given that the parents said they were prepared to pay and that that would actually save the UK hospital a lot of money.

You seem to be moving on to a totally different scenario where the doctors don't refer purely because they think they know best. That's a different issue, and one which is pure speculation.

TroelsNextCampaignManager · 02/09/2014 11:33

Hak according to the hospital Ashya was going to be starved to death - and once again the hospital could say it had not denied help when perhaps the parents' day to day point of contact HAD.

Icimoi · 02/09/2014 11:34

If I were a journalist, I would be asking the Czech hospital if they had had any correspondence with the SGH. And the rough content of it, if that is allowed to be disclosed.

No, not without the parents' permission.

Spero · 02/09/2014 11:36

That's what I am finding confusing about the Sally Roberts case. My recollection at the time was that she wanted some kind if oxygen therapy? So was she a victim of media misreporting or has she only more recently mentioned proton beam therapy?

Icimoi · 02/09/2014 11:37

Troels, how was the hospital to know that the parents had the means to keep the feeding machine plugged in when travelling through Europe by car?

MerryMarigold · 02/09/2014 11:40

And no-one is allowed to talk to the parents whilst they are incarcerated Hmm

TroelsNextCampaignManager · 02/09/2014 11:41

ici - other parents have come out to say that they were not told about/ their children were not referred for proton therapy because of the cost. Only when the parents did their own research and said they would pay for it themselves did the children get the referrals they needed. HOWEVER that also relied upon the consultant knowing enough about that option and being supportive of that course of action - that won't be the case in every situation, especially if the consultant and the family are not communicating effectively.

Icimoi · 02/09/2014 11:43

There's quite a helpful article here . It appears to be clear that, at least at the point when she took her child out of hospital, Sally Roberts wasn't contemplating proton beam therapy.

Icimoi · 02/09/2014 11:44

Troels, if that's correct and the parents were getting the referrals, it makes it totally inexplicable that they took him out of hospital.

Icimoi · 02/09/2014 11:45

Sorry, just realised I misread that and you're talking about other parents.

DuelingFanjo · 02/09/2014 11:46

Sally Roberts took her son to the oxygen therapy while on the run as it was one of the alternative therapies he was having alongside his other treatment.

It is true that she used and looked or alternatives but she had a very good case against the aggressive radiotherapy they were going to give to him and she then looked for alternative less invasive treatments.

I remember at the time there were discussions on here about how there was no way Neon could have Proton therapy because it just wouldn't work for his kind of cancer and he was too young. Maybe those people still believe this so they won't be on this thread supporting this much younger child's right to seek proton treatment, but I do think that anyone posting here should at the very least be able to support Sally Roberts in hindsight and recognise that there was an equally awful campaign by medical experts to rubbish her efforts to help her son.

DuelingFanjo · 02/09/2014 11:47

And I bet that this current family were aware of Proton beam therapy in part because of the publicity it was given when Sally Roberts was fighting for it.