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Ashya King's Father Explains His Side
Posted in the other thread but nobody seems to be reading it.
Answers
Gromit, no one in their right mind takes a sick five year old, a week out of brain surgery, out of hospital and across borders in the back of a car in search of alternative medical treatment. What did they intend to do? ------------
08:53 Sun 31st Aug 2014
Most Consultants in a clinical capacity have feared this situation many times in their professional careers and that includes me.
A patient with an inoperable and incurable cancer being told that " we have come to the end of the road."
A second opinion when called for is invariably agreed upon and that second opinion, in my opinion does little for the prognosis of the patient.
I feel that this was the situation in this unfortunate case.
A patient with an inoperable and incurable cancer being told that " we have come to the end of the road."
A second opinion when called for is invariably agreed upon and that second opinion, in my opinion does little for the prognosis of the patient.
I feel that this was the situation in this unfortunate case.
Maybe you need to look at the video again naomi and the one posted by the son that I gave a link to.
The parents have hardly taken the child in a fit of pique as a slur of the moment decision, they ensured he had the equipment and nutrition required for his journey, something I suspect the hospital were blissfully unaware of when threatening them with exclusion orders etc.
A judge will make a reasoned decision later today and I'm sure all these factors will be taken into consideration.
The parents have hardly taken the child in a fit of pique as a slur of the moment decision, they ensured he had the equipment and nutrition required for his journey, something I suspect the hospital were blissfully unaware of when threatening them with exclusion orders etc.
A judge will make a reasoned decision later today and I'm sure all these factors will be taken into consideration.
I agree Sqad - one would be more than willing to agree to a second opinion in this situation. There should be full notes and letters available in the records. In addition these days a clinical nurse specialist is usually sitting in on any conversation with parents to try and avoid any misunderstanding.
I'm not sure that this child's prognosis is as dire as you think. He has had the tumour removed. He can't move speak or swallow at the moment because he has posterior fossa syndrome from which he should recover in weeks or months.
Even grade 4 medulloblastomas have a 60-65% survival rate, if given radiotherapy/chemotherapy.
Last year the NHS sent 99 children abroad for PBT.
There are trials ongoing in America giving PBT to children with medulloblastomas, but the results of long term follow up are not yet available, so as yet it is unproven.
I'm not sure that this child's prognosis is as dire as you think. He has had the tumour removed. He can't move speak or swallow at the moment because he has posterior fossa syndrome from which he should recover in weeks or months.
Even grade 4 medulloblastomas have a 60-65% survival rate, if given radiotherapy/chemotherapy.
Last year the NHS sent 99 children abroad for PBT.
There are trials ongoing in America giving PBT to children with medulloblastomas, but the results of long term follow up are not yet available, so as yet it is unproven.
Chill, Yes, they had ensured he had the equipment and nutrition required for his journey, so it was pre-planned - but they didn’t ensure his on-going treatment. If the hospital was uncommunicative with the parents, as is claimed, I have to wonder why the doctors mentioned a child protection order at all. They only do that if they consider the parents’ wishes to be against the best interests of the child – as in cases where parents refuse permission for life-saving blood transfusions. The certainly don’t do it for no reason, so something must have been said – and for it to reach that stage, quite a lot I imagine.
Looking and listening to this video, it is obvious that this man is beside himself. That said, I think to do what he has done is wrong; yes, I "get" he wants what is best for his son; yes, I "get" he's unhappy with what the oncologists have told him, but I have no doubt that they DO know better than he. I thinks he's speaks about the doctors appallingly. I'm sure they would send Ashya, for this treatment if they saw ANY benefit from it. Obviously there isn't. Mr King is going to have to accept that. Very sad.
slaney....I agree.
If chemotherapy and DXT were not offered, then the tumour was incurable.
If chemotherapy WAS offered with DXT, then presumably the parents didn't like the thought of the DXT, preferring PBT, which may or may not have been accepted by Southampton General Hospital.
Who knows?
There is a subtle difference between operable and curable.
ANY cancer is operable, but not necessarily curable.
If chemotherapy and DXT were not offered, then the tumour was incurable.
If chemotherapy WAS offered with DXT, then presumably the parents didn't like the thought of the DXT, preferring PBT, which may or may not have been accepted by Southampton General Hospital.
Who knows?
There is a subtle difference between operable and curable.
ANY cancer is operable, but not necessarily curable.
agree Slaney and Sqad.
we dont know the details - we sent a local kid over the sea and were exxcitedly told the tumour had been 98% excised.
and I commented to the neurosurgeon - you could have done that couldnt you ?
and he said ' incomplete excision, anyone can do that '
I can understand the proton therapy bit- demand. To get it free of course - Idont suppose he wishes to pay
but I dont understand - and so I will take Asha to Malaga ......
we dont know the details - we sent a local kid over the sea and were exxcitedly told the tumour had been 98% excised.
and I commented to the neurosurgeon - you could have done that couldnt you ?
and he said ' incomplete excision, anyone can do that '
I can understand the proton therapy bit- demand. To get it free of course - Idont suppose he wishes to pay
but I dont understand - and so I will take Asha to Malaga ......
gness
\\\Horseshoes......please don't think that doctors and consultants always know better.\\
No you are correct.......but they are the "best show in town."
If you disagree with the treatment you can always ask for a second opinion and if you feel that you have been treated badly, you can take legal action.
It is not the fault of the medical profession if you do neither.
\\\Horseshoes......please don't think that doctors and consultants always know better.\\
No you are correct.......but they are the "best show in town."
If you disagree with the treatment you can always ask for a second opinion and if you feel that you have been treated badly, you can take legal action.
It is not the fault of the medical profession if you do neither.
Sqad.....I understand what you are saying....but in this instance a second opinion was of no use......a second opinion wasn't needed....and they were not the best show in town this time. They were simply wrong.
And you know how I feel about legal action.
The letter of apology from the consultant and the meeting I had with him were enough for both of us know I was right......but too late.
And you know how I feel about legal action.
The letter of apology from the consultant and the meeting I had with him were enough for both of us know I was right......but too late.
Chill, Yes, they had ensured he had the equipment and nutrition required for his journey, so it was pre-planned - but they didn’t ensure his on-going treatment.
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This is where it's all becoming a little bit mired. Supposedly there is one source that says 'nothing more can be done for him', so bar the feed his parents took with them, what is his ongoing treatment, other than TLC?
Adversely, his parents felt he could get treatment in the Czech Republic, ergo they took him(probably for his sake more than theirs) with them as they sought the funds for said treatment.
I'm neither saying the parents are right or wrong, just that they're doing the utmost for their child in heartbreak g circumstances and to that end can hardly be accused of neglect, which is apparently the accusation.
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This is where it's all becoming a little bit mired. Supposedly there is one source that says 'nothing more can be done for him', so bar the feed his parents took with them, what is his ongoing treatment, other than TLC?
Adversely, his parents felt he could get treatment in the Czech Republic, ergo they took him(probably for his sake more than theirs) with them as they sought the funds for said treatment.
I'm neither saying the parents are right or wrong, just that they're doing the utmost for their child in heartbreak g circumstances and to that end can hardly be accused of neglect, which is apparently the accusation.
The hospital are hiding behind the veil of patient confidentiality in saying the minimum. He has accused them of not replying to his letters. It would not be breaking patient confidentiality, or the data protection act to refute that allegation. They do not have to say what was in their replies back to him, they merely have to say they replied to his concerns.
The hospital haven't said anything in regard to correspondence. Which makes me think the parents version is correct, and the hospital are desperately covering their tracks.
The hospital haven't said anything in regard to correspondence. Which makes me think the parents version is correct, and the hospital are desperately covering their tracks.
I agree that NOBODY (probably not even our Sqad) is infallible, but in this case I honestly do believe that they KNOW absolutely that the treatment will not make this poor little boy better. Listen to what Mr King is saying, it is more about his chagrin that the doctors won't do as HE wants, because he's found something questionably better on the Internet. He's a desperate man and I'm sure I'd be just as desperate in his situation. I'd be very happy to see this little boy running around in 5 years time, but I very much doubt it; although I'd be happy to be proved wrong. Limited resources surely must play a part. If this young life WAS saveable I truly believe they would offer any treatment available. Somebody has to make these decisions; I'm SO glad it's not me.
// The most important aspect of all this is that that poor little boy, who appears to be terminally ill, is now in a Hospital, not in the back of a car, or in a Hotel. //
Rubbish. If the child is terminally ill and the hospital can do nothing more for him, why is he still in hospital? He is better surrounded by his parents and brothers and sisters.
Rubbish. If the child is terminally ill and the hospital can do nothing more for him, why is he still in hospital? He is better surrounded by his parents and brothers and sisters.
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