Charlie Gard 12

[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:

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

De-lurking to say how much I appreciate all your comments on this thread. This case breaks my heart. Back around the time of the Court of Appeal judgment, I saw a photo on Facebook of that poor baby (not looking much more responsive that he does now), and all these idiots were commenting saying shit like "aw, look at him looking adoringly at his mum" and "look how alert he is!" . No wonder that those poor parents haven't made it past the denial stage with an army of enablers telling them what they want to hear, at no cost to themselves of course. No matter how this ends, I really worry that the parents will end up isolated, possibly bitterly regretting having let social media take them away from their son at this critical time, whilst the online mob will, of course, have moved on to its next outrage.

Thanks Bore! I found that one earlier but couldn't find it again.

I think that GOSH will remove ventilation if that is the way the decision goes, they after all were all agreed that that was the correct decision earlier, they were the ones who bought the original case to court.

Judge Francis seems to be doing his job extremely well. This was, after all, about the supposed new evidence, and he has made sure that Hirano had access, made sure that all the clinicians and the parents have had the chance to have the discussions they needed, he has made sure that all the required tests were performed, I think he is trying to be utterly thorough in allowing this new evidence to be tested. I was very impressed by the way he has managed to move this out of the adversarial court atmosphere, and put some privacy around the necessary deliberations and hard decisions and discussions. He has given the people concerned some little area of quiet to do the hard job they have to do as clinicians, and focus back on Charlie and what this means for him. And if need be, and no agreement can be reached, he will make the call for Charlie.

I don't know how many such cases there are, I guess we just wouldn't hear about many of them, because not all parents would seek publicity or feel that it would help them. It's the promise of a 'cure' elsewhere that makes the difference here and the fund-raising issue, I think, as opposed to the case linked above, where it was a private matter as regards religious belief and seems to have been accepted finally by the parents with help from their imam. I am impressed by the little touches added even to that transcript, where it says at the end:
"Note added by the judge when approving this transcript: I have been
informed that, after discussion with both parents and an Imam, the
ventilation was withdrawn from both boys, at the hospital, about five days after this judgment. They died and have been buried. May they rest in peace. "

(But if they are not under the mental health act Tinsel but have temporarily lost capacity due to stroke or other illness they are usually strong enough at least just to pull a tube out!)

Really shocked at that journalist's reaction. Though mildly impressed that she can be phoned IY SWIM.

summerbreezer. Judge Francis is a High Court Judge in the Family Division. Not criminal division. He would never hear a criminal case, e.g. Murder. His background as a QC is in family law. He became a QC 15 years ago so is hugely experienced in this field of law and he is known to be a compassionate person. He is eminently qualified to hear this case.

Much, much earlier a poster was asking about a directions meeting. This is where the parties meet so the Judge can talk to them about procedures and protocol in court as well as what he will focus on in the hearing. He will refocus all concerned!

The thing that fascinates me about the internet is that all of us have instant access to any information including the best research there is but it seems to have given birth to a trend to see everything in terms of memes and seeing everything in terms of good/bad or right/wrong

I remeber when home internet acess was just beginning to be a "thing" (a.. v.e.r.y. .. ….. .. .. .. …… s.l.o.w….t.h.i.n.g.) and an academic I know said how it was wonderful that now everyone would have access to the best libraries in the world…

LOL
That's not what we did with it (for the most part)
we shouldn't be allowed nice things

There are hundreds of parents across the country and some in gosh who are having to face the decision to turn off life support for their loved ones. They do it privately. They do it with dignity. They do it to give peace to their loved ones. They do it because they live their lived ones but put their needs last and their loved ones first. By going public c&c have denied all of the above to themselves and most importantly to Charlie. If the decision of the court is upheld they could not turn off that machine because if the media and their so called supporters who keep screaming fight on fight on no matter what. They gave been pushed into a corner with no way out by going public. They will regret that for the rest if their lives. It us so so sad.

Fascinating judgment posted up thread, perhaps particularly about why repeat MRI scans would not have helped in that case.

" For decades, there have been parents making the heartbreaking decision to turn off their child's life support but we don't get to hear about it. "
Yes, and those who have posted on here and been kind enough to share their feelings, and those who have perhaps doubted their decisions based on the stuff appearing on social media.

But if they are not under the mental health act Tinsel but have temporarily lost capacity due to stroke or other illness they are usually strong enough at least just to pull a tube out!

not able to speak but purposfully pushing it away etc tends to count for decling consent.
Capacity = mental capacity not capacity to speak, there are other ways to communicate lack of consent. Pulling it out would be a clear one.

However if someone had something like dementia and was likely to dislodge it it wouldn't be clinically appropriate anyway. Low appetite & Anorexia is an accepted part of the later stages of dementia and is otherwised addressed usually (favourite puddings, adding supplements)
but once it gets to the point in dementia where people aren't wanting to eat at all, it's usually end of life time anyway

Sometimes a stomach tube is more appropriate, that is often used in severe learning disabilities.

I can't really think of clinical situations where you would be forcing down a nasal feeding tube because if someone can pull it up too high then it's not appropriate anyway

Sorry all fingers and thumbs tonight but you all hot the gist of what I said. Xx

I suspect, Sos, that that regret will be cloaked as anger at the world and the establishment. If I could wish anything for Charlie and his parents, it would be peace for all of them in their different ways. Connie and Chris seem unlikely to get there on current evidence, and I fervently hope that somehow they will.

"look how alert he is!"

So fucking unhelpful

it's not fucking supportive to pretend a disabled child isn't disabled
FFS

Maybe when its over one way or another they may come to terms with it and find peace. Everyone deserves peace.

cutting through all of this someone posted something quite pertinent to politics in the UK and that is that (to paraphrase);

There are people who would like to be rid of the NHS

This story does work towards that AGENDA, I don't want to be conspiracy theorist/ sensationlist about it all but the timing of this case and the press coverage is interesting to say the least

taratill it does fit in nicely with the villification of the doctors strike and lack of public support for NHS payscale payrises

If anyone hasn't already read the related judgement posted earlier about the case of those poor twins , please do.

It's such a moving piece of work. It made me feel so proud of our medical system and judiciary.

<a class="break-all" href="http://go.mumsnet.com/?xs=1&id=470X1554755&url=www.judiciary.gov.uk/wp-content/uploads/2015/10/re_a_11.pdf" target="_blank">http://go.mumsnet.com/?xs=1&id=470X1554755&url=www.judiciary.gov.uk/wp-content/uploads/2015/10/re<a class="break-all" href="http://go.mumsnet.com/?xs=1&id=470X1554755&url=www.judiciary.gov.uk/wp-content/uploads/2015/10/re_a_11.pdf" target="blank">aa<a class="break-all" href="http://go.mumsnet.com/?xs=1&id=470X1554755&url=www.judiciary.gov.uk/wp-content/uploads/2015/10/re_a_11.pdf" target="_blank">11.pdf

The timing of the case is wholly down to C and C not agreeing with GOSH and Charlie being ill. It's just ludicrous to think anything else! It has been in the press since January
when the fund raising began. What possible conspiracy? C and C wanted the press coverage and could have agreed with GOSH for a dignified end if life so no-one would have ever known the name of the baby or anything else about his illness and his problems.

I don't think care proceedings will be brought in respect of Charlie.

I think the Judge will uphold his earlier ruling and GOSH will just carry it out. I don't think care proceedings add anything necessary.

This may be a totally ignorant question, but if Charlie was allowed to travel to the US, he wouldn't be able to get travel insurance would he? Surely travelling without insurance, especially when he is so ill would be a monumentally stupid thing to do? That money won't last, so what the hell happens then!

I also can't see any doctors or nurses from the UK willing to travel over with him. Plus the equipment would need to be taken from GOSH, and again, I can't see how that would happen.

bubbles you are right about the timing of the case but the fact that it has been a media storm is interesting for a number of reasons.

summerbreezer. Judge Francis is a High Court Judge in the Family Division. Not criminal division. He would never hear a criminal case, e.g. Murder. His background as a QC is in family law. He became a QC 15 years ago so is hugely experienced in this field of law and he is known to be a compassionate person. He is eminently qualified to hear this case.

Bubbles, sorry if my post was unclear.

Bourdic quite correctly pointed out that he had been a Recorder. Recorders sit in the Crown Court. Therefore he will have heard criminal cases, albeit relatively straight forward ones.

He has also been a HC dep. They are also "part time" judges who hear more straightforward matters in the High Court.

He is less experienced as a full time High Court Judge. Although he has had practice as as a Deputy and a Recorder, being a full time judge is very different.

I have been a barrister for many years. I know lots of judges. Various factors make this a difficult case for the judge, and particularly for a relatively inexperienced judge. From what I have heard, the legal community has expressed nothing but admiration and support for Francis J.

I don't think I ever said that he was not qualified to hear this case.

Hope that clears up any confusion.

What possible conspiracy?
It's not a conspiracy if it's already happened (i.e. the case used to villify the NHS by those with an anti social healthcare agenda)

This may be a totally ignorant question, but if Charlie was allowed to travel to the US, he wouldn't be able to get travel insurance would he? Surely travelling without insurance, especially when he is so ill would be a monumentally stupid thing to do? That money won't last, so what the hell happens then!

I don't think anyone has thought that far ahead. The whole thing is just ridiculous.

tinsel if you look back I didn't say it was a conspiracy, although perhaps I was a bit careless in that choice of wording.

I'm just saying that there is an anti NHS Agenda and this story supports it.

Which is perhaps why there is such a media interest.

I was quoting BubblesBuddy