Ashya King

[FoxEye]

Don't be soft in the head.

The issue isn't the cost, the issue isn't availability. The parents want an unproven treatment rather than a proven treatment regime based on what they've read online.

New medical techniques are always unproven for a while, aren't they? How does an unproven treatment become proven? After it's been used for a while? You can only go so far with rats and monkeys.

Anyway, today it's true to say that a lot of info is freely available on the 'net, and you don't need to be a surgeon or doctor to have access to the results of numerous studies. Like this one?

http://www.hccnevada.com/mayo-study...over-imrt-for-advanced-head-and-neck-cancers/

 

[Glaucus]

New medical techniques are always unproven for a while, aren't they? How does an unproven treatment become proven? After it's been used for a while? You can only go so far with rats and monkeys.

Anyway, today it's true to say that a lot of info is freely available on the 'net, and you don't need to be a surgeon or doctor to have access to the results of numerous studies. Like this one?

http://www.hccnevada.com/mayo-study...over-imrt-for-advanced-head-and-neck-cancers/

But you also need to understand trials, of which most people don't. Which cancers? Seeing as NHS do fund trips abroad fort PBT for some types of neck and brain tumours.

But the fact most people seem to ignore is the parent's don't have the money and seemingly haven't arranged treatment, they weren't caught on the way to a hospital to have said treatment.

 

[Minstadave]

The hospital didn't say it wouldn't work. They said it would be of no benefit (quote from Mr King).

As far as I understand proton beam therapy is usually used instead of surgery for difficult to reach areas or where surgery is difficult, not often as an adjunct, the kid had already had surgery.

Some tumours are radio sensitive, some are not, it not only varies on the type of tumour but also the detailed histological findings.

I have done 6 months in paediatric oncology and barely scratched the surface so I'm no expert however if proton beam was a sensible option it would have been offered. It seems it was a daft option that a parent had found online and they were told it was not an option.

As a doctor you can't ethically offer an unproven treatment to a child, if their parents want to gamble with the child's survival you are duty bound to stop them.

 

[Minstadave]

New medical techniques are always unproven for a while, aren't they? How does an unproven treatment become proven? After it's been used for a while? You can only go so far with rats and monkeys.

Which is why we have trials, which in fact nearly every child with cancer in the UK has the option of being enrolled in when they start their therapy.

What we don't do is randomly pick therapies based on parents whims and have a crack at the kids with them.

I'd like to know if the Spanish had actually offered the parents this treatment or they were just polling up.

 

[Xordium]

Im not sure how my comment is in the wrong there?

I am merely saying, surely the treatment is worth a shot? I understand that some Drs are saying it will do nothing, and maybe it will do nothing, but people, yes even Drs, have been wrong in the past. Cant see what the harm is in trying though, surely the worst thing that can happen is that it doesn't work and the best thing that can happen (even if unlikely, not impossible, but unlikely) is that it doesn't. Is there something so wrong with giving something a go?

Because every treatment has a number of effects. You balance the desired effect against the side-effects to see whether it is worthwhile. Some times you want one effect sometimes another - in one speciality then the desired effect would be classed as a side-effect in another.

Do you think seriously think it is okay to give procedures a crack knowing they will cause direct harm just because you want to say you tried. The fact you say 'cant see harm is in trying though' tells me you don't really understand the mavity of what is being suggested here.

 

[thepharcyde]

Cancer treatment does not seem to be the NHS forte by all accounts.

https://www.google.co.uk/webhp?sour...=UTF-8#q=cancer saving drug too expensive nhs

Cannot fault the parents for taking it on themselves to try to fund better treatment for their son if their understanding of their sons condition / third party info that they have researched is accurate.

 

[Andy_82]

Cancer treatment does not seem to be the NHS forte by all accounts.

https://www.google.co.uk/webhp?sour...=UTF-8#q=cancer saving drug too expensive nhs

Cannot fault the parents for taking it on themselves to try to fund better treatment for their son if their understanding of their sons condition / third party info that they have researched is accurate.

Most of the drugs you have highlighted in the search are denied for various reasons i.e. cost / benefit analysis by nice. I can't remember who stated earlier in this thread but pediatric cancer treatments do not have the same rules applied, so the reason is certainly not denied on cost.

Most likely as has been highlighted earlier, that proton beam therapy was of no benefit to the child, for one of thousands of reasons cost or availability not being one of them.

I feel an awful lot of sympathy for the parents, there only doing what any parent would do but in these situation this internet is not very helpful. Hope of a cure / treatment is important, but false hope is just cruel. Hopefully Ashya will be treated with the most effective treatment asap.

 

[Xordium]

I think what this case really does highlight is all these years after Bristol that there are treatments that should be centralised nationally still taking place in units that are ill-equipped to deal with them.

For things that are super-specialised then I don't know why there isn't just a national centre that drives all the main care passing off to satellite units when people are over the critical periods. Why they don't just build a massive super-hospital for such things smack bang in the middle of the country by the NEC I really don't know: airport, big city, trainlinks, plenty of room to build a hospital and massive parents accomodation, plenty of room for parking, plenty of room for housing developments specifically for staff, etc. It really would be the ideal solution but no far more fun to keep renovating Victorian hospitals in inner cities where staff can't afford to live and dilute peoples experience at mindblowing cost. When we get the tech in this country then the London one is going to be put in at UCH, however 2/3 of patients we use it for a kids and yet within 2 miles is the Evelina and Gt Ormond St - surely they should be the ones receiving - maybe you know MinstaDave but doesn't UCH only really specialise in Ewing's Sarcoma?

 

[scorza]

Confiscation of passports doesn't stop them travelling across the Schengen area. They could be half way across Europe by the time Spanish authorities are aware.

So how would have Hantspol located them without the European Arrest Warrant?

So let's just re-cap a moment; A family have a desperately ill son and are not satisfied with the care he was receiving at Southampton General. They decide to take him out of Southampton to a hospital in Spain where they believe he will receive better treatment. A European Arrest Warrant was issued by Hampshire police which has led to the detention and prolonged custody of the boy's parents, leaving the boy along in a foreign hospital with only his brothers to care for him.

Does any of that sound like a "result" for Hampshire police?

 

[Xordium]

So let's just re-cap a moment; A family have a desperately ill son and are not satisfied with the care he was receiving at Southampton General. They decide to take him out of Southampton to a hospital in Spain where they believe he will receive better treatment. A European Arrest Warrant was issued by Hampshire police which has led to the detention and prolonged custody of the boy's parents, leaving the boy along in a foreign hospital with only his brothers to care for him.

Does any of that sound like a "result" for Hampshire police?

No it doesn't does it. And the benefit of hindsight is wonderful thing. How about this version though:

So let's just re-cap a moment; A family have a desperately ill son and are not satisfied with the care he was receiving at Southampton General. They decide to take him out of Southampton to a hospital in Spain where they believe he will receive better treatment. No European Arrest Warrant was issued by Hampshire police because the hospital didn't want to pursue the issue and the thought was the parent would return the boy unharmed of their own volition. However, this was not the case and the child got septicaemia during the journey resulting in cardiac arrest following profound shock.

Does any of that sound like a "result" for Hampshire police?

 

[Glaucus]

So let's just re-cap a moment; A family have a desperately ill son and are not satisfied with the care he was receiving at Southampton General. They decide to take him out of Southampton to a hospital in Spain where they believe he will receive better treatment. A European Arrest Warrant was issued by Hampshire police which has led to the detention and prolonged custody of the boy's parents, leaving the boy along in a foreign hospital with only his brothers to care for him.

Does any of that sound like a "result" for Hampshire police?

No, there's no suggestion they were going to a hospital at all.
That is the biggest issue.
NHS won't stop you seeking a 2nd opinion or getting treatment abroad.

They didn't even have the money to get treatment abroad. Their fundraising wasn't even close.

They weren't even arrested in a hospital.

So yes it is a result as the kid is now in hospital.

 

[Xordium]

And once again they were offered a second opinion and help to find treatment abroad. That leads me to think the second opinion came back and said no too.

 

[Minstadave]

So let's just re-cap a moment; A family have a desperately ill son and are not satisfied with the care he was receiving at Southampton General. They decide to take him out of Southampton to a hospital in Spain where they believe he will receive better treatment. A European Arrest Warrant was issued by Hampshire police which has led to the detention and prolonged custody of the boy's parents, leaving the boy along in a foreign hospital with only his brothers to care for him.

Does any of that sound like a "result" for Hampshire police?

It would help if you read a thread before you give your most valuable recap.

 

[Tombstone]

Do you think seriously think it is okay to give procedures a crack knowing they will cause direct harm just because you want to say you tried. The fact you say 'cant see harm is in trying though' tells me you don't really understand the mavity of what is being suggested here.

You no more know that it would cause direct harm than I do.

According to the sources, others with the same condition have had the same treatment and it didnt cause them harm. It didnt necessarily work, but didnt cause direct harm. Even the Drs themselves did not say that the Proton treatment shouldnt be tried because it would cause harm, they say that it wouldnt benefit in their opinion, not that it would harm.

So unless you are now saying that you are fully in the know on this treatment and are a medical doctor yourself, then you are no more enlightened as to the shoulds and should nots of trying it than myself, so you might want to climb down off your high horse of "Im great because I understand it all and you are nothing because you dont". God people are so arrogant online these days.

 

[estebanrey]

Funny how this story has gone from...

"Mad and cruel parents kidnap own child from hospital to pursue Homeopathic Witchcraft solution to brain tumor"

to...

"Cruel NHS with mad rules threaten grieving dad with a restraining order if he asks about that expensive, but better, treatment one more time"

Just shows how you should never believe anything you read until all the fact come out.

 

[Xordium]

You no more know that it would cause direct harm than I do.

It is direct radiation therapy. It will cause direct harm.

According to the sources, others with the same condition have had the same treatment

Not all tumours are the same, in the same region, the same grade.

and it didnt cause them harm.

Yes it did it however it also did great good. Benefit > risk.

but didnt cause direct harm.

Radiation therapy always causes some harm.

Even the Drs themselves did not say that the Proton treatment shouldnt be tried because it would cause harm, they say that it wouldnt benefit in their opinion, not that it would harm.

Would no benefit means risk > reward.

God people are so arrogant online these days.

Alternatively, Hikari is a medical doctor and both Minstadave and myself were not only medical doctors but specifically worked in paediatrics.

 

[Tombstone]

Alternatively, Hikari is a medical doctor and both Minstadave and myself were not only medical doctors but specifically worked in paediatrics.

Then I bow to your infallibility.

And leave. I need a break from these forums.

 

[Xordium]

No-one is infallible. You yourself just demonstrated that by being so judgemental without exploring the possibilities.

If you had also have taken the time to read the thread you would have noticed that there was a fair bit of criticism thrown in the direction of Southampton. Who really was the arrogant one then.

 

[Burnsy2023]

So let's just re-cap a moment; A family have a desperately ill son and are not satisfied with the care he was receiving at Southampton General. They decide to take him out of Southampton to a hospital in Spain where they believe he will receive better treatment. A European Arrest Warrant was issued by Hampshire police which has led to the detention and prolonged custody of the boy's parents, leaving the boy along in a foreign hospital with only his brothers to care for him.

Does any of that sound like a "result" for Hampshire police?

Hantspol didn't know that Ashya was being taken to a hospital though, just that his parents took out a very ill child with no notice and no communication of their intentions.

 

[Xordium]

I wonder what the same people on here would have said if they had all done nothing and the outcome was not good.