Charlie Gard 13

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

I think trump will wait until there's nothing left to do
then will tweet about how he would have done something if he had been allowed

"Armstrong: but what's its formal evidential status?"
Could that possibly mean that Armstrong would have an opportunity to argue about exactly what each statement in the transcript meant, along the lines of 'Yes, I know Dr X said that, but what we think he meant was....', and hence keep stringing it out????

Okay, looking stuff up, a lot seems to refer to 'evidential status' things which have no evidential status, evidential weight. So, I guess the judge answered it.

And then the continuing backwards and forwards about the 'new evidence'. I do think the judge has set a clear timescale, and I think he intends to keep to it and deliver his judgement in Tuesday.

I could also see some American congress member calling for a boycott of everything related to Peter Pan due to the GOSH link.

Just marking my place again by repeating that messages of support can be sent to GOSH via their Facebook page. We know that these messages are passed on to staff and are very much appreciated. If you're not on FB you can email [email protected] and voice your concerns about how hospital staff are being treated in the media and on social media.

Question for legal people. Is there ever a point at which a solicitor/barrister would withdraw from a case such as this? Am wondering what is going through Armstrongs mind? If he is fairly sure that the judgement is going to go against his clients, and given that there is a terminally ill baby in the middle of this, can he not strongly advise his clients to stop the process?

Can the parents challenge the transcript .... and thus go through it statement by statement, person by person, looking for fact and dismissing opinion?

No legal expertise here either, but surely that couldn't work. Dr H was 'their' witness, and he could only offer opinion, not facts. Refusing to accept anything that's purely opinion can only damage their case.

Yes, the Barrister could advise them to drop any insistence of new evidence. He could advise them to agree with GOSH after analysing the transcript. He could still do that. After examining the transcript, he may see it is hopeless. Whether he feels he could persuade them is another matter and he may not want to. He is advocating for them, so that's his job, but he may have serious doubts. If they wish to continue, he will advocate for them. If he suggests they should agree with GOSH, they could agree to that position. Chances of that seem slim.

It is GOSH that brought the case back to court, not C and C.

Reading the comments above on disablism reminded me of the parents of the little girl with trisomy 18 who had a blog (links to it were posted on one of these threads, but her mum used to post here too). This family wanted to ensure their little girl did not face disablism but wanted her treated as an individual - if a treatment was refused it should be because it was not in their particular child's best interests, not just because the child had a life limiting condition and 'we don't offer cardiac surgery/ventilation for chest infections for kids with t18'

I think that is a really good example of accepting the realities of a child's condition without being disablist and in a way the complete opposite of what a lot of CA are asking for - 'other people with mitochondrial disorders have a decent quality of life therefore charlie must be allowed to too'

I've looked after several kids with mitochondrial illnesses, ranging from those in mainstream school to those who have not even survived as long as Charlie has. I've also looked after kids with many other profound and life limiting disabilities and illnesses. I know nothing more about charlie than I've seen in the media but from what I can gather, looking at him as an individual, he has a progressive illness affecting every cell in his body, the natural history of which Is to continue to deteriorate. The doctors and nurses looking after him feel he can't experience pleasure, can't make his needs known, can't express pain or discomfort and can't breathe or swallow, with no hope of meaningful recovery and the expectation that his organs will continue to deteriorate.

I feel that their feeling that, as an individual Charlie has an intolerable life and that they should stop artificially keeping him alive is actually less disablist than the feeling that some kids with mitochondrial disorders can ride a bike so therefore we should maintain Charlie's currently intolerable life...

A sky reporter called Ian Woods also tweeted from the court today, only thing different/incremental to Rozenberg's set of tweets was this:
Connie Yates vigorously shaking her head at various comments being made by hospital barrister.

Yes the barrister/solicitor can tell the parents that they are not going to win but at the end of the day he is putting his clients best case forward.
I dare say it would destroy any trust they have in him if he moots the point that gosh are correct and he probably won't want to do this.

It doesn't sound as If Connie is any where near accepting the inevitable.

This thread is interesting re death
(I don't think the OP would be UR to shag anyone if she's not going to enjoy it for any reason, but interested in the bigger picture)

www.mumsnet.com/Talk/am_i_being_unreasonable/2985545-About-shagging-a-funeral-director?reverse=1

zzzzz you've been asked this up thread but I'm going to ask it again: using your definition of "disablist"- what would a non-disablist judgement look like? Is there any circumstance at all in which it can be considered that someone should not be artificially kept alive when they have a terminal illness that has, as part of its known course, caused catastrophic disability?

I don't consider myself disablist; under your definition perhaps I would be. That doesn't make me run shrieking from the thread as you seem determined to assume. For me there IS a point at which artificial prolonging of life is no longer the right thing to do, and it's a point that is reached every day by families for all sorts of medical reasons.

The bigger ethical concern for me is that people are willing to use an experimental drug on a baby who is about as vulnerable as it's possible to be.

Surely the definition of disablist is discriminating against someone who is disabled?

I wouldn't want ANY baby being given experimental drugs.

I wouldn't want any human who couldn't communicate sensation, pain, mood etc being given experimental drugs.

I don't believe people should be kept artificially alive in a "shut in" condition, when brain scans have shown massive irreversible brain damage and they have literally no method or hope of communicating, ever.

I don't see how I'm discriminating against disabled people by holding those views.

For me, the point is not that Charlie has severe physical disabilities. It is not that he has physical disabilities and brain damage, but could still have a good quality of life, although everyone will differ on what constitutes a good or even acceptable quality of life..

It's that if GOSH is right about the extent of his brain damage, he is not even aware of his own existence. It's not that Charlie is trapped in his body, and if he survives could be helped to have some quality of life. 'Charlie' is not there any more, and hasn't been for months.

news.sky.com/story/new-charlie-gard-scan-makes-for-sad-reading-10956597

BBC Breaking news says that the GOSH lawyer has said the latest scan makes for "sad reading".

twitter.com/IanWoodsSky/status/888408854861676544

If CY and CG decided today that they would cease treatment, and move Charlie to Palliative care, can they decide that before Tuesday, or has this process got to take it's legal course now?

Are they back in court this afternoon then (re Ian's tweet)? I thought that small session this morning was it?

I think they are.
Considering Chris thinks GOSH are lying it is unlikely they will ever consent.

I assume that if C&C drop their case, the old result stands?

This case has been taken by GOSH. But it is clear they wont.