Issues raised by the CG case 11

[Venusflytwat]

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:

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

Well I'm sorry if the parents had allowed the scans then perhaps Gosh could have started treatment ages ago and baby has been suffering all this time which is down to not having scans. Gosh can't scan him if parents refuse. I'm not having NHS taking the blame for this mess!

But there's still no getting away from the fact this treatment has never been tested on anyone with Charlie's condition.

Well it's got to be good news that the new EEG has been done. Whatever it shows, up to date understanding of Charlie's brain function is imperative, surely.

I think GOSH are conducting themselves so professionally. They seem to be doing everything they can to allow this doctor proper and full access. I know it's exactly what should be expected of them but I still feel so impressed with them. This must be taking such a toll on their resources.

Better skip off am a bit angry.

Where's the source for the parents refusing scans? Is it the comment the judge made about not ordering them against the parents wishes?

I might be missing something but it wasn't stated in court that the parents had blocked new scans.

It was however heavily implied when the Judge said he would not new order scans without parental consent.

Darthmaiden I think that's right but the parents may have been told that there is no way it would go in their favour without the evidence required from scans. They may have changed their minds on the basis that it would be their only hope that it would show some brain activity.

I really don't think his EEG will show improvement. Charlie is severely encephalopathic, GOSH and Hirano agreed on that last time.

Charlie most likely isn't sedated for this one (since he's on morphine instead), and C+C reckon that was the cause of the abnormal EEG in march.

Yes that was the comment deux and darthmaiden

Well if they are optimistic does that mean they have been told scan has improved or are they just hoping being as they thought sedation was cause of bad scan in march? And would they tell them results before tomorrow?

I'd imagine that's all part of the discussion tomorrow.

They'll be hoping. They won't know the results yet, EEGs can't really be interpreted by a layperson very well, where most people could see a seriously abnormal MRI and know it was abnormal.

We're all waiting to hear what the outcome is, on here and on CA
But some of the hard core CAers are speaking as if they have some sort of right to know
Nobody has any right to know except those at the meeting, the rest of us just have to wait until it's cited in court.

If the family never go back onto social media, and never post another pic etc, I wonder what the lonelier/more deluded members will make of being "dumped" (since they think they're personal friends now)

Nobody has a right to know at all it's a private matter

Do you think judge had their fb closed after he found out about leak?

Yes they just speculate and hopefully will get sued

I complained about it Maryz, random bullshit musings shared as news

its quite obvious by judges comments that parents didnt giv conseent

remeember theyre all liars wont believe anything gosh says

Do you think judge had their fb closed after he found out about leak?
No
how?
FB will not shut down hate speech sites
only they can have taken down their own pages
and it does not augur well for their hopes

Jinglejanglejobs, are you a medical person? The number of people on these threads with actual knowledge and/or experience relevant to the Gards' situation is amazing.

Gosh I really am thick I don't seem to be able to analyse things like.you all do.

mary even the news were at it-quoting 56% out of context

Is it not plausible that people posting here are interested because they have relevant experience or knowledge?

sos just treat it all as bullcrap until the facts are read out in court