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Charlie Gard 12

999 replies

muckypup73 · 19/07/2017 11:58

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

OP posts:
Maryz · 19/07/2017 19:44

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MissHavishamsleftdaffodil · 19/07/2017 19:44

Sorry, that sounds awful. Obviously the first and best hope would be that yes, the answer is this treatment will work and there's clear evidence of it.

It just sounds, sadly, very unlikely to be the case.

muckypup73 · 19/07/2017 19:45

thatdearoctopus, yes because unfortunately they do not want to hear reality x

OP posts:
Maryz · 19/07/2017 19:47

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TinselTwins · 19/07/2017 19:49

I hope very much that the US dr agrees with GOSH that this is not in Charlie's best interests
I just don't see that as his job/role you see
I see his role to give evidence about the treatment itself
and he won't say that the treatment definitely won't work on charlie, bu that's not the same as disagreeing with GOSH re whether its in his interests to have it IYKWIM

in a normal non social media x factor court case, DrH's evidence would be seen as just one angle

But in THIS case he's seen as some sort of man from delmonte who can make a dramatic yes/no decision.

Maryz · 19/07/2017 19:51

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TinselTwins · 19/07/2017 19:52

Sadly I think people hear 10% chance of success and hear "10% chance of a cure" - I'm sure if that was the case he would have been treated months ago

Yeah totally. "successful treatment" in legal and scientific terms could just mean that the "subject" survived it, and there was any measurable response.

"sucessful treatment" in CYs mind is charlie riding that bike like that other little girl

GabsAlot · 19/07/2017 19:54

i think Judge Francis was hoping c and c would come to an agreement with the hospital but its jut not happening is it

i know he ha to make decisions all the time but this is a very emotive one and hes alreay said no once already

DarthMaiden · 19/07/2017 19:55

The 10% cure myth is definitely something I've encountered.

Once people understand what that 10% figure actually means they have become much less certain that he should be treated (or completely reversed their opinion).

It some I think the media have totally failed to explain.

MissHavishamsleftdaffodil · 19/07/2017 19:55

Tinsel I see what you mean Sad

Wordsaremything · 19/07/2017 19:56

Long time lurker here. Just to say how much I have appreciated these threads and how much I have learned from them.

I discussed this case with my elderly mother at the weekend. She reads a broadsheet daily but has no access to social media, and her view was that the child should be allowed to die, and that his parents understandably, are acting from some sort of guilt in trying to keep him alive no matter what the cost to him - effectively postponing their grief, if you like. I agree with her.

Reading these threads has opened my eyes to many issues beyond the tragic facts of the case in question.

Most of all I am appalled at the lack of critical thinking so many adults seem to demonstrate - and above all, that this is only taught FOR THE FIRST TIME at undergrad level these days.

I was a bookish child and I will never forget the moment when I just 'got it' regarding the texts I was reading for O level. There was the text, and what lay below it. Beyond simple differnces of 'meaning' .

A relative of mine , a recently retired teacher, tells me that sort of thing is regarded as post A level now, and from zeezeeks post, the same applies to the sciences. It's horrifying.

Not the fault of the pupils,( i.e. School children, not students- just one example of the over stating of reality that has led us to this mess) or their teachers, but successive failures in policy, I suspect.

Never has there been more need for teaching of critical thinking for children, especially now, in the age of social media.

TinselTwins · 19/07/2017 19:57

GabsALot it did feel like there was a "cruel to be kind" aspect to allowing her to sit in on the medical meetings, but if there was it didn't work, she's still saying thatt GOSH just "don't want to be proved wrong" by trying the treatment so I guess she hasn't absorbed their rationales?

BeyondDrinksAndKnowsThings · 19/07/2017 19:58

I absolutely believe Dr H's work could be worthy of a nobel prize
I absolutely could see the benefits in a young child just diagnosed with MDS trying the drug.

Alongside these, I believe that - assuming gosh are correct on brain scans etc, which I have no reason to believe they aren't - it is not in Charlie's interests to try it.

GavelRavel · 19/07/2017 19:59

Dr H is just an expert witness like in any other case, I think it's very unfair to effectively try and make him make the decision. that's the judges job.

thatdearoctopus · 19/07/2017 20:01

I wonder if poor Chris and Connie have become so caught up in the fight that, even if they know deep down that they should let him go, they just can't.
Perhaps over the next few days, when they ponder what Dr Hirani may have said, they could possibly agree to concede to what GOSH are saying and say goodbye. Then there would be no need for anothe court hearing.

samesorrystory · 19/07/2017 20:01

Punnet Flowers and hugs xx

redshoeblueshoe · 19/07/2017 20:02

I agree with you Beyond

TinselTwins · 19/07/2017 20:02

Most of all I am appalled at the lack of critical thinking so many adults seem to demonstrate - and above all, that this is only taught FOR THE FIRST TIME at undergrad level these days.

I remember doing romeo and juliet in school at about 15yrs, and being told by our teacher to not take the words on face value but rather to cross reference them with the context of that point in history, and english class became history class for a week (SOWs these days would NOT allow that!)

In contrast, I had a discussion with DD today about how copy'n'pasting images from google images (as she had been told to do in school) is NOT the correct way to make a presentation, and introduced her to the idea of copyright, and how to find copyright free images, and that she should consider issues behind the images (who owns them, what they might mean to those who own them)

again not the teachers fault they just don't have time to go off on a tangent these days!

GabsAlot · 19/07/2017 20:04

i didnt mean that gavel i think judge wantd cy to realise how dire the situation wa son her own once she had the meeting-but she hasnt

thatdearoctopus · 19/07/2017 20:05

Words, what you say is very true. How can people seriously think that Charlie can just be put on a plane? And then as long as he makes it to the US, their "world class experts" will fix him? And that GOSH jist want to kill him? Yeah, because that's what all doctors over here in the UK train for.

Sostenueto · 19/07/2017 20:08

Wtf is going to happen if they still don't agree? What IS the directional meeting for on Friday? How long does it take to make Charlie a ward of court if decision is upheld to make sure move to pallitive care happens? (Cos the parents will try to stop it I'm sure if their denial of facts persists). Will this involve yet another court case. Is this never going to end with peace and dignity?

Puzzledandpissedoff · 19/07/2017 20:11

Sostenuto ... as I've mentioned before, that's been precisely my worry: the possibility of yet another court case to drag this out even more Sad

And yes, I'd also like to know what this "direction" meeting is about

Maryz · 19/07/2017 20:12

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Wordsaremything · 19/07/2017 20:12

Interesting, Tinsel. Your discussion with your daughter was great- 'respect the source' -and that's why the tinterwebz is so bloody dangerous as it lacks context. Facts or images in a vacuum.

As someone pointed out on one of these threads, information does not equal knowledge.

You can teach a school child to think twice about nicking images and infringing copyright - and that's great, and awful the teachers gave no guidance on this.

Context - understanding the source- debating it- is a whole other matter.

GavelRavel · 19/07/2017 20:12

Gabs yep I know ow cross post.

I agree about the parents sitting in on meetings too. They obviously do need some form of reality check, however hard it is, because, as we've said before, they've got the unique emotional connection to their son, of course and want only the best for him, but with the best will in the world, you can't replicate years of scientific and medical education and training and decades of experience in less than a year. Nor should you have to of course, it's just terribly sad that the relationship has broken down so fundamentaly.

Despite this I still really understand their wish to hang onto every possible scrap of hope, especially when he initially seemed well, I'm not sure I wouldn't be doing the same thing. it's so hard. I guess at some point you have to reach the point where you're ready to let go and know it's the right thing for your baby, as some of the people on this thread have bravely done.

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