I don't live in the UK so much less exposed to this story. But from memory, what I'd read was:
1. There was a US hospital with real physicians with an experimental treatment that might have a 10% chance of significant improvement in his condition, that was willing to try it for free, with no cost to the NHS, that even if it didn't work (admittedly low chance) might provide useful information re the condition generally.
Not once has anything been mentioned about cost, all his care from a world leading children's hospital, one that has made many breakthroughs over the decades was provided free to the parents. It should be noted that the GOSH is a hospital that many other world leading treatment centres reach out to for support and consultation. It regularly consultants and works with leading edge researchers and treatments worldwide as well as being a leading research and treatment hospital in its own right.
The offer
s and case consultation from the USA included treatments the GOSH team had already disregard, some of them were treatments that that GOSH had pioneered. The "10%" that the parents latched onto was from one particular USA professor for a treatment that had never even been tried in animals and his offer was
not based on clinical knowledge of the child's condition. I've bolded that as I think it is absolutely key. THe "offer" for this treatment was made with no clinical knowledge. The GOSH offered for this professor to visit, examine etc. the child - he never took them up on this offer despite having over 7 months to do so.
2. Hospital and child advocate - who is a leader of an assisted suicide advocacy group - said no, let him die.
The medical team assessed all available clinical knowledge, consulted worldwide and there was no other viable treatments remaining. In clinical assessments of the child they believed he was still reactive to pain stimulus. They therefore decided that beyond palliative care there was nothing else that could be done for the child.
The parents and the hospital's case for their decision was weighed by
several courts - not by any advocate, the courts were presented with all the medical details, all the ruled in favour of the hospital. There was no actual medical case based on clinical knowledge provided by the parents.
3. Oh, and he has to die in hospital, not at home.
Again not the case. At this point the child needed extensive medical life support, simply taking him from GOSH would have killed him. There was no other hospital that was willing to take him from GOSH, GOSH helped arrange a transfer to a hospice. As with most end stage care, the life support systems would have been removed after the transfer, the parents did not want this and wanted him kept alive on life support for undefined reasons for an undefined time. They again went to court to try and get that, thankfully it seems to have got through to them at that point that all they were doing was prolonging his suffering for
them to have what they wanted.
4. Oh, and that treatment that might work with a low chance of success? Well, too late, but we won't actually tell you the parents ahead of time, we'll have our lawyer spring it on you in court with the MRI results.
Again no. Nothing like that happened.
The professor offering the potential treatment never did any kind of clinical assessment even though he could have done so. The parents had even by this point raised more than enough money to have paid for him to come over to the UK and even pay him a consultation fee. For some reason he for around 7 months never requested the child's medical records or to be allowed to visit and conduct his own clinical assessment of the child. Any "evidence" he had was not related to either his treatment being used to treat any child with Gard's disease (because it had never been tried) and was not based on his clinical knowledge of the case. In other words he did not provide
any medical evidence relevant to the child's case.
The parents at all times had access to every single piece of clinical data, the medical team went through all the scans with the parents prior to any court case.
From my perspective, the child advocate had a clear conflict of interest or apparent conflict.
Can you please name this "child advocate" and explain how they influenced the court's decision.
A 10% chance costing $0 to the NHS and not taking much time seems reasonable to me. And #3 and #4 just seem cruel to the parents.
[/quote]
There was never any medically determined "10% chance", and have no idea why the cost issue is being raised - no cost considerations played any part in the court decisions.
I mean, the UK can't even get its act together to stop thousands of girls each year from being mutilated, but they'll pull out all the stops to make sure this baby doesn't get an experimental (but legitimate medical) treatment.
In the UK children have rights, I expect my courts to protect those rights. A parent is meant to always do what is in the best interests of a child, sadly sometimes emotions get in the way of parent's making the correct decision and sadly we end up having to go to a court to ensure the best decision
for the child is made.
