to all GN's living in France 4 year old boy missing

My father had an operation to remove a brain tumour in Southampton General in 1968. He died six months later as those days were a world away from the treatment available to cancer sufferers now. He was only 50 and I know that if there had been any possible treatment options we would have pursued them.

It is particularly unfortunate that his parents are being held over 100 miles away - there must surely be somewhere nearer. It is so sad that they are unable to visit their son. What a terrible mess this all is for everyone involved, all of whom seem to have been acting in good faith, but it has just finished up as a total c**k-up.

Thanks for remembering, penguin. My husband had brain cancer. The radiotherapy changes you. His memory went, his speech changed even from the problems he had. His centre of balance changed. He could not walk, but he did not know if he was sitting or lying down. It was a different part of the brain, but the changes were there.
He was being treated in a different part of the hospital next to the Bobby Robson Centre, but we were hoping that they would suggest trials for him. He was too far gone by then, and the machines that they have now were not available then.

I think Ashya's parents should be allowed to do whatever they can to help him, whatever the outcome. The police can still back down if they want to and withdraw the court order.

As penguin says, many people who have cancer can get brain cancer as a secondary. An adult can decide what to do. A child cannot and relies on his family to help. That's what should be allowed to happen here.

I gather the Czech hospital have'nt received his records and MRI scans, without which they cannot say whether the treatment would be suitable.The proton beam will not help if there are bits of tumour spread through the brain, in that case normal radiotherapy is more effective.

Thank you petallus and jings. durhamjen posted a few pages back, The Guardian link to Ashya's father talking of why they wanted the beam therapy. Conventional radio can take so much of a person away. If something kinder is possible it seems, to me, a much better option.

penguinpaperback

Good post penguinpaperback

It's probably some sort of unwritten code hospitals have. Perhaps they can't just take on someone else's patient without a referral? Sounds like the UK hospital is just being stubborn.

I've just watched the nine o'clock Sky News. The Czech hospital are ready to give Ashya treatment as soon as possible. They are not asking for money before commencing treatment. If, as I understand, the UK hospital were going to offer brain radiotherapy surely there is nothing to stop him having the proton beam therapy instead? Yes if he is already brain damaged this cannot be reversed this but it seems the beam therapy is more targeted and therefore kinder than conventional radiotherapy which undoubtably would cause even more brain damage. I have no medical expertise but have stage 4 breast cancer and know one of the areas breast cancer can spread to is the brain. Friends who have have spread to brain have done their upmost to have targeted cyber knife over conventional radiotherapy whenever possible. Late friends who had the usual radiotherapy were much changed after their treatment. A friend who had targeted cyber knife instead still died but lived, well, for another 2 years. The morning she had her treatment she was out shopping in the afternoon. The parents sound realstic, they are not expecting miracle cures but are trying for a better quality, however long that may be, of life for their son.

Galen if this family want to go ahead and try the Czech hospital why cannot they be allowed to do so? Either they would be offered the treatment or they would find out that it was not suitable for their child after all.

I am not convinced that the Southampton hospital acted with compassion. There was no need for them to take such a paternalistic (even authoritarian) attitude.

It's a terrible situation! That little boy needs his parents and family with him now - who knows how much time he has left, but we can all imagine how alone and frightened he's feeling.

What's the matter with the Powers that Be? Haven't they any compassion? and

Patient confidentiality.
They can't come out and say 'we've told him it's pointless and the Czech's won't do it in his condition but he won't listen' which is what I suspect is the situation

So why doesn't the UK hospital come right out and say that?

Or, if they have no decent alternative, just let him go to the Czech Republic?

"I know that side effects for the proton beam therapy are less and he would have more or less a normal life if he received that treatment."

This is what Ashya's brother believes - but Ashya has already suffered damage and their hope of a more or less normal life for him is likely to be an understandable but vain hope. It is very sad.

They are only willing if he is a suitable case. Not all brain tumpors respond to photon beam and I suspect his is the kind that doesn't.
Besides, it wouldn't reverse his condition

A Czech hospital is ready and waiting to give him the treatment. But they need the OK from the UK hospital. Is there a reason why this is not being given? We need to know!

The whole family are not being allowed to see him now. WHY?!!!

jingl I think it is a temporary Wardship Order so let's hope common sense prevails and it doesn't become a full Wardship Order. I remember working with children who were made Wards of Court before the 1989 Children Act and it was a horrible, secretive way to undermine parental rights/ responsibility. Not only that but every decision was delayed by the requirement to go to Court every time. Not a very appropriate way to respond to the needs of a very sick child.

I want to know exactly on what grounds this Ward of Court order has been made.

We are not being enough information.

What i said above was slightly wrong. The lady who gathered funds to take her son to america hadnt got enough money and the american doctors did the procedure without charge.

Why can't some top doctor from one of the foreign hospitals where this proton treatment is available, be asked for an expert opinion?

I wish we knew for sure what treatment the Southampton hospital was proposing. Why don't they make an official statement?

The lawyers must be adding up the £'s already.

And I have been asked why when i became very ill i did not return to the UK.

It sometimes feels that Britain is turning into a police state bit by bit - where are the rights of the parents?

I see no reason why they are not allowed to proceed with the treatment, from what I understand, the UK hospital had intended to use radiotherapy anyway - it's not as though the NHS were being asked to pay so why not just leave the parents to do all they can to help their son? Doctors have been proved wrong in the past.

I certainly wouldn't place any blame at all on parents who are frantic to try every possible avenue to save their child's life.

Can the ward of court decision be challenged?