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

It feels like things are getting more subdued on the news front, etc. That might be just because of the delay in between court hearings, but I hope it isn't, that the parents and everybody else are beginning to find a sense of resolution.

One thing that occurred to me when I heard that FB pics had been taken down was that maybe the rights to said pics and others had been sold to a publishing house or similar for a future book.

Sounds very cynical I know. But really, does anyone think that the Gards haven't been contacted by publishing houses/media rights bodies? The C army have already been talking about who is going to play them in the film.

Well off now see you all tomorrow peace to all prayers to Charlie a family.

GinSoakedTwitchyPony going by posts nope planned for both days..except now they're having music..

Wouldn't surprise me if he is there seeing as he seems to like the media attention.

Seems that some of CA are seeing the shouting and hooting and resultant press coverage is a sort of entertainment..
Regarding the ''Banner'':

Fantastic! I was hoping you could bring that to the next protest in London. (I see that you are not in the UK.)💙💙💙💙💙💙💙💙💙💙

Cool. Are you coming to London on 24th and 25th?

yeah

It would be so much better if the court hearing could be private.

Someone suggested 'dont stop me now' as a song to be played outside Court during the protest..how do the lyrics even fit into anything? Just bizarre

im having such a good time im having a ball"

how inappropriate

Post marking.

Laura's back on CA Thunderclapping again!

Even the Katy Perry Roar seems be off..don't get the thought process considering what be going on inside it's hardly a happy day out..

They were asking people to come along and "be part of something special' at one point.

Even the Katy Perry Roar seems be off..don't get the thought process considering what be going on inside it's hardly a happy day out.

I think it is for some of them, they're so caught up in fighting and "winning" that they don't see that there are no "winners" here, If C&C suceed it's the beginning of a long hard road for them

It's like lines are blurred, like CG is a reality TV show and their "votes" can "Save" him

Having seen the chatter about 'what song to take' and do we need a license to play songs in public ? It was as if a party was being discussed , not a gravely ill child and a traumatic court case.

I saw somne vids on the news about CA and they looked like they were having a great time, smiling, shouting and out competing each other in posters.
It just felt very inappropriate, not to mention the ghastly Pasta guy who came over to ''support'' the family.

Vulnerable people are easy prey for exploitation.

Despite being angry at the denigrating of GOSH, I do feel real sympathy for Mum and Dad..it seemed as if the whole story gathered a hideous momentum of it's own, with various unsavoury characters leaping on the roundabout to 'enjoy the spotlight'.

Why would they be protesting??? it could go their way, I dont think it will, unless they know something we dont? as for the thunderclaps they are a waste of time.

Why would they be protesting??? it could go their way
I don't think even they know
I think if you asked them they'ld mutter something about "support" and "still fighting"

I think they're still protesting because they don't know how to stop/step back now

Oh FFS, the thunderclap is another hijack of autism awareness illuminations again!

Logging into mumsnet after a long long time - was googling some CG info which lead me to these threads.
I am also curious to know what the US & Italian specialist thought? CY is thanking the US Dr for visiting her son for few hours when the family have been so critical of GOSH staff who have been spending so many hours looking after him and basically keeping him alive without any words of gratitude.
I wonder what happens if CG were allowed to go to US, gets FDA approval for trail and after few months the US Doc says it's not among any significant difference but parent's insist they have seen a difference and he is not suffering etc and they want to carry on?
The US expert seems very clever & so far his answers in court were non commitall- Now that he has been identified in media and all and his reputationion is at stake as well (Just see how the family & CA are slagging GOSH & it's staff) he might be even more cautions before agreeing to take over Charlie's care in US in case thing go wrong (which he cannot predict how it will go as its an experiment anyway)

I read somewhere other hospitals in UK refused to take over CG's care after the total breakdown of relationship between CG's parents & GOSH.

Why would they be protesting??? it could go their way

They like protesting. It's a fun day out. But I agree it is totally inappropriate.

I think it was said in court that no other hospital would take him.

Mommytomylittlestars, yes other hospitals have refused charlie, also the doctor that has come from the Usa has said previously that treatment is futile.

mommy thats what worries me where do they draw the line on treatment

Why is Laura still keeping the social media profile up with thunderclaps?

They've got the US doc over, they've raised more money than they need?

Unless she's wanting to sell her story as aunty I don't see how anyone at this point is going to benefit by keeping CG's public "celebrity" profile up in this way

I mean what is the aim here, now at this point?

I had hoped she'ld turn inwards now and focus on her sister..

Actually mommy that is a good point.
Oh, I feel so desperately sorry for both parents and Charlie. The question of when to stop fighting must be so hard. Medical breakthroughs do happen, you can see why they would hope against hope.

GOSH's contemporaries are the likes of the Evelina (also London, would probably be first on the list but they may say GOSH has more expertise), Manchester Childrens, Sheffield Childrens, Newcastle and Alder Hey (very far north for C+C and transport could put Charlie at risk as it'd require flying him).

GOSH have applied to the court to draw a line on treatment whilst he is in their care. He is not under the care of anyone else unless the judge orders it. The judgement will be based on the law in England and the findings and recommendations of the doctors. Plus views of the parents and the Guardian. The first two will outweigh the second two.