To be shocked that charges have been dropped and Cameron is tweeting happiness about Ayasha case

[Albertatata]

Shocked generally at the way this has been reported. So distrustful of both the medics and police when at the end of the day the parents removed their ill child, took them to a different country without any medical handover, starting an international search and now David Cameron is tweeting that he is relieved charges aren't being brought!

It is undoubtfully a terrible terrible situation but there is a way to behave and this isn't it. Fine if you want to sell your house and access medical care in another country do it, but do it with the guidance and cooperation of the medical team looking after him. Don't bloody run off with him to another country & not tell anyone.

Prepared to be flamed but the fact of the matter is that we have only heard the families side of things and medical team are limited by confidentially.

[Sabrinnnnnnnna]

Oh minmooch, that's heartbreaking. I'm so sorry

[MrsRuffdiamond]

it would be my guess (and it can only be a guess as we don't know the full facts) that there is no reason to not treat him with protons (they're not a worse option) just that they're no better than x-rays

But Happy all the research I have read points to there being a very good reason for opting for proton therapy in favour of x-rays, if there is no reason not to.

Proton therapy is less indiscriminate, therefore less damaging to surrounding tissue, which is surely pretty vital with a brain tumour, when the patient can be left with cognitive impairment caused not necessarily by the tumour, but by the means used to destroy it.

[Stickerrocks]

OP YANBU. I have nothing but gratitude for the oncology teams at SGH from personal experience. The parents have used the media to put their case across & I have no doubt that they were driven by live and desperation. However, SGH cannot put their side across due to patient confidentiality. How could it possibly be in a child's best interests to put a sick child in a people carrier and drive to Spain?

[Stickerrocks]

Love not live.

[BigChocFrenzy]

They were trying to avoid forced treatment which they thought would cause further brain damage. Their Googling would have found scientific papers like this:

In a study of children treated for medulloblastoma, Grill et al. found IQ scores of 84.5, 76.9, and 63.7 for X-ray doses of 0, 25, and 35 Gy, resp.
So, any initial IQ loss caused by surgery is worsened by X-rays; the effect is longterm and dose-dependent.

[BigChocFrenzy]

SGH say proton treatment wouldn't be better or worse for survival, so not worth NHS money; the parents thought there might be a chance of less brain damage and were willing to pay.

[Jux]

Quality of life doesn't seem to be taken into account, in that case, BigChoc? ie, survival rates are the same so take the cheaper option regardless of differences in collateral damage?

That is what I thought, btw, but would like very much to be wrong.

[CaptainFracasse]

This story reminded me of the story of another child affected by brain tumour. 2 years on, after chemo and radiotherapy she was declared free of cancer. Great isn't it?
But at what cost? That lively 4yo us now a severely disabled 6yo who can't sit unaided, is blind and has lost a lot of her hearing too. She has other multiple needs too.
So yes she is alive and will be part of the 80% survival rate but there is no wonder that any parent would try and find a treatment that has less 'side effects' than that. Because these aren't just side effects. They are long term 'collateral' damage that will have as much impact if not more on that child's life.
I know I wouldn't want to survive like this. And I think there is also a place to discuss if this is actually a fair treatment done to a child or any other human being.

This also shows how just looking at survival rate is crap. Is being alive whatever the cost THE ultimate goal? Always??
What you should be looking at is whether the disease has being cured (not the same than survival rate) and what has being your quality of life both during and after the disease has been 'treated'. Bad side effects during treatment are worth it when it means you can live happily for years after. Is it worth when you know it will give you a month more to live? Or when you will end up severely disabled all your life?
These are questions that maybe we should all ask ourselves, not just about this case, not just about cancer. This is true for a lot of other conditions.

[minmooch]

CaptainFracasse what you say is very true. Unfortunately at diagnosis most kids have to start treatment immediately. My son was diagnosed on a Tuesday and on Thursday morning he had to have life saving 11 hour surgery. Chemo had to start before he had even recovered from surgery for any hope of ridding him of the disease. We knew the risks - the treatment could kill him. The disease would kill him if he didn't have treatment. A decision no parent should have to make for their child. There was no chance to take time over decisions. There was no choice really - a chance to save him or let him die definitely. But was it the right choice? I don't know. He suffered greatly. But we had good times in the 27 months he lived after diagnosis. I had the privilege of caring for him in those months, seeing his strength, humour, dignity. I had the pain of watching all of those taken away from him.

If I knew then what I know now would I make the same choice for him? I honestly don't know. But we gave him a chance. That was the only thing we could do.

[Nokidsnoproblem]

The parents of Ashya King may well have escaped prosecution now for kidnapping their own child. But just wait til they get home and find they've been fined for him not attending school.

[minmooch]

Nokids Really? After my last post you can really find something to joke about this? How heartless.

[Tokoloshe]

But we, as a society, recognize that children need more protection than adults.

And we give this responsibility to their parents

Like Baby P's mother? We assume that parents are loving and caring. But we have procedures in case they're not - sadly not all parents do the best for their child. 99.99% do. But some don't, and in those cases the parents can be over-ruled. The alternative is that biological parents can do whatever they want to their child - even if that is abusive.

[Tokoloshe]

My DDs have had to give evidence in court twice.

Once because their biological mother was abusing them.

The second time because the social workers refused to listen to her when she said she wanted to be adopted by me (I was a respite carer, but we have different skin colours and cultures).

So I don't assume parents OR professionals are necessarily right.

[Molio]

minmooch I'm so sorry for what you've had to deal with, also for that grotesque lack of taste. Yours was a very affecting post; so extremely sorry for you and your son.