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Issues raised by the CG case 11

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MNHQ have commented on this thread.

Venusflytwat Mon 17-Jul-17 18:30:20

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

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

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

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

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

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

blueskyinmarch Mon 17-Jul-17 18:37:25

Thanks for the new thread.

That Express article is a disgrace. There is nothing it at all to suggest the US Dr has said anything of the sort to Charlie's parents. They should be ashamed of themselves using this to get readers in.

muckypup73 Mon 17-Jul-17 18:38:47

Thanks for the thread venus and I agree with the opening post too.

Doubledottvremote Mon 17-Jul-17 18:42:34

I hope the parents are having a fb break and can discuss things without pressure from the mob.

jinglejanglejobs Mon 17-Jul-17 18:45:22

If Charlie is well enough for a trial of treatment to be of use, then still the doctor does not have ethical and FDA approval to do it. He's admitted that.

He's going to have to get that first before being able to proceed, and Charlie is not likely to have long enough for that to come through (it's taken months for me to have ethical approval granted for a study purely involving looking at patient records, never mind a first in human trial on a child with an extremely poor baseline).

smilingmind Mon 17-Jul-17 18:45:57

If C&C have realised the reality of the situation and I feel for them.

BeyondDrinksAndKnowsThings Mon 17-Jul-17 18:46:53

My previous summary posts might be handy to have near the top of the thread...?

...

Charlie has encephalomyopathic MDS

Dr mario tested this med on 11 patients with myopathic MDS
Test showed 10% chance of breathing without vent
11-56% chance of improved muscle function
50% chance of crossing bbb

And you gotta bear in mind that each of those % is cumulative
So the minimum chance of it working isn't 10%, it's 10x11x50 (and that is for a different condition )

Back of envelope calculation for me has it at 0.55%
That could be wrong though, maths is not my strong point

taratill Mon 17-Jul-17 18:47:11

I agree that the Express headline is a disgrace when there is no substance behind it.

However I'm not surprised by it at all, there has been quite a lot of dubious reporting.

Really hoping that the Gard's are OK tonight as the meeting will not have been easy for Connie.

TheWeeWitch Mon 17-Jul-17 18:48:58

Thanks Venus.

Thank you also to everyone on the thread who has wished my family well today. The kindness of MN is something to behold flowers

DarthMaiden Mon 17-Jul-17 18:50:19

Thanks @Venusflytwat

I've reported the duplicate to MNHQ and also put a post on it to direct everyone here.

Alfieisnoisy Mon 17-Jul-17 18:50:22

Thank you for the new thread, I continue to keep Charlie's family in my thoughts, and of course Charlie himself,

muckypup73 Mon 17-Jul-17 18:50:40

TheWeeWitch, I hope you are bearing up ok luv xxx

MoreProseccoNow Mon 17-Jul-17 18:50:59

Am I right in thinking that the NYC & Italian Dr's examined him today & that there will be a meeting which CY attends tomorrow, to discuss their findings & present them?

ItsNachoCheese Mon 17-Jul-17 18:52:28

I hope tomorrow passes as smoothly as posssible for all concerned

11122aa Mon 17-Jul-17 18:53:06

The reaction from Trump and Co will be horrendous if the doctor says publicly that he can treat him but the court's rightly say no.

muckypup73 Mon 17-Jul-17 18:55:18

11122aa, Trump has stepped back from it all, have you noticed he has been rather quiet? I wonder if hes been told off.

GinSoakedTwitchyPony Mon 17-Jul-17 18:55:46

That's my understanding too Prosecco , can someone else confirm please?

muckypup73 Mon 17-Jul-17 18:57:04

ItsNachoCheese, I cannot imagine how Connie and Chris as feeling at this moment in time, my heart truly goes out too them

stitchglitched Mon 17-Jul-17 18:57:52

Good opening post. I'd just like to add re the speculation at the end of the last thread, I noticed that Connie's fb had gone last night so it's not the case that she has done it as a result of the meeting.

Sorry to hear your sad news Weewitch flowers

TinselTwins Mon 17-Jul-17 18:58:07

Whatever the outcome, and whatever the reason, I think it's a good thing that the parents are taking a social media break!

Hopefully now they'll see that there is real life non judgemental support to be had, they don't have to "Feed the beast" of social media popularity contests to be "supported"

11122aa Mon 17-Jul-17 18:58:42

Trump comes and goes with his views. He could always chirp up anytime.

Sostenueto Mon 17-Jul-17 18:59:32

Hang on a minute folks don't assume anything. There could be multiple reasons why the parents fb been closed. It could well be that she had to insure nothing was posted because of meeting which I'm inclined to think is the case.

Worrying, well not worrying but strange a headline saying expert going to help then no more mention of him. Now going to look.

redshoeblueshoe Mon 17-Jul-17 18:59:54

Alfie I agree, my thoughts are with Connie Chris and Charlie tonight

DarthMaiden Mon 17-Jul-17 19:00:25

Where is the complaint thread against these threads?

I'm interested in the viewpoint.

Writerwannabe83 Mon 17-Jul-17 19:00:29

If the American doctor says he's willing to treat Charlie and he convinces GOSH doctors that it's worth a try then does it mean the Judge doesn't have to do anymore? After all he can't say no to it goubg ahead if the American doctor wants to try it and our doctors have acquiesced? Can he?

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