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

Sounds like he has phenylketonuria?

The nhs argument will be that it is a condition managed well by diet. So why does he need a £100/day drug just so he needs slightly less diet management.

A lot of money for no change in outcome. Presumably if it's experimental there's also the danger of it not working, and changing his diet leading to him deteriorating or even brain damage...

What I thought justanotherone it can be controlled by diet, but if the autism is bad, being able to get the boy to rat non protein food could be difficult. Maybe they should look to seek a way to control autism?

Hope I haven;t derailed the thread going on about the autism case. Interesting though.

Yes, sorry, think I'm adding to the derail. (I have an autistic son, and getting the bugger to eat anything has been a challenge in the past, as he'd genuinely rather starve than try new food, so I have every sympathy.)

Thanks Gabsalot

Lance my youngest (who is now approaching an assessment), is a bugger for eating as well. It took us six months to convince him to eat a sausage. He'd rather starve as well.

i rckon thats already been done penguin now c an c are off facebok

What about headlines that scan has took place in newspapers then? That breached publicity ruling didn't it?

@MsHooliesCardigan the heel prick test is done for PKU (Phenylketonuria) and already has well established, effective treatments. If you can recall can you pm me the name of the 'new' treatment please? I have a friend who's child has this, and we weirdly live near a cluster of PKU parents.

regarding the judges meeting, I immediately thought it was probably a result of the UKIP guy saying on Saturday that Gosh were keeping him hostage.
If I was the Judge I'd of completely lost it.
I think he spoke to The Gards and their legal team - and said you need to have a media blackout - or CY will not be allowed in the meeting.

x post gabs - but you put it more succinctly

An actual level headed posts off Ca.

Guys stop bashing GOSH. On the news last night the reporter said that GOSH are in similar position to parents in that they too have no legal rights. They are to continue caring for Charlie as normal until a court decision has been made. The only authorised thing that Gosh can do is what was initially decided which was switch off Charlie's ventilation. Everyone is frustrated but before throwing accusations just remember that it was GOSH who has given Charlie this chance by going back to the courts with the new evidence sent to them by the overseas specialists. Their hands are tied just as much as Connie & Chris. The Dr's & Nurses looking after Charlie day in day out since Oct will almost certainly be as emotionally attached to this brave little warrior just like Charlie's Army. Have faith, support Charlie and let's not give or Connie, Chris & the rest of their families extra things to worry about with negative thoughts about GOSH.

That's good to see Mucky, hope they don't get bashed for it.

taratill, I hope not, it certainlyleaves a bitter taste in the mouth when you see the shit Ca have been posting.

Muckypup, Wow, that was a courageous post for a member of CA to have posted...
I have seen the nasty comments and almost instantaneous 'blockings' done by CA to anyone who questions in any way that Charlie might after all be sicker than CA and CY are admitting to.
There was a lot of support for the family initislly, but the more they bash and abuse the good reputation of GOSH the more the British public are losing support for the family, but not Charlie himself, whom many feel ought to be allowed to die peacefully if newspaper comments [Daily Mail/Independent] are to be believed.

I've noticed since yesterday that a lot more people are defending GOSH on the CA page and it's so nice to see.

I'm sure there are plenty of reasoned people on there as well as those who are deluded/insane/paranoid so it's good they seem to be finding the courage to speak up and try and defuse the madness.

redshoeblueshoe good point about the emergency direction meeting might have been judge reacting to gobby UKIP man remarks about Charlie being "held hostage".

Maryz I read a good analogy about the proposed treatment in the presence of brain damage - it was likened to giving vitamin C to a scurvy victim whose teeth have fallen out. No amount of vit C will make the teeth grow back.

That's nice to see comments like that on CA.

I stayed away from reading CA over the past few days. I engaged with an admin CA on Twitter who said there were never any threats to GOSH or GOSH's legal team. I tweeted her some screenshots I took. She was horrified and said she'd blocked them from the group. I thanked her .

I doubt that the judge would have called an emergency hearing just because of UKIP man. There's been so much crap floating around abusing GOSH that I suspect they take the view that one more bit of crap really won't make any difference, sensible people know it's rubbish: the reality is that it can't affect the court decision, so there is little point in the judge trying to dictate what the parents' sidekicks choose to say. The judge has made it very clear that his decision isn't going to be influenced in any way by social media stuff, newspaper publicity and petitions.