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

You can tell from the shape of his skull in that sun pic that his head (i.e. brain) isn't growing normall

I can't find Connie's or Lauras comments on the Sun but some of the other comments are HORRIBLE and I'm disgusted that Laura knows that Connie is reading that and is joining in rather than taking her phone off her and looking after her!

sh still in the mind set then that gosh are lieing and dont want to back down

its gone too far now noone will convince her

An 'approved' post on CA has now confirmed Pisa wasn't lit up. They seem to have realised it was stretching credibility a bit.

Connie's comments are replies to other comments. So she's 100% seen them, as she's replying.

She's getting alot of stick in the comments about the merchandise. I was wondering why her parents aren't guiding her better (I've seen her Mum sharing CA stuff) but I'm starting to think she's a pretty formidable character and maybe she just won't be persuaded away from the path she is on. No excuse for the wider family to encourage it though.

I am not defending the harsh comments at all but I think that some people are getting incredibly frustrated with the CA and the constant use of social media.

One man told her to get off her phone and be with Charlie. It's obvious that nothing will change her mindset and yes, Laura Gard and the inner circle have a lot to answer for.

even if true mary-imo it doesnt look like an official account) they stil cant override a british court order

It's a parody account on twitter I think

There may have been buildings lit up for Charlie but the photos they are using are from Autism Awareness

Possibly (yet more) crappy journalism and use of stock photos.

The Autism light up was global and would have warranted a professional photog. generating a tonne of stock photos. If you have the pic to hand... well a one blue fountain is as good as any other blue fountain from the perspective of a local jouno wanting to go home on time I suppose,

the Italian members of Charlie's Army seem to be even more bonkers (and vocal) than the American ones.

I know people like them. With similar facebook feeds. And interests and reactions. If my personal experience is anything to go by,
less bonkers, more a bit lonely and socially isolated, in part due to their religious/political intensity.

And for some there'll be national pride at play causing some extra pumping up and shoutiness. Amoung other things pride has been dented thanks to "EU losers otherwise known as PIGS" kinds of attitudes.

Some people in the group might be finding it feels really really nice that Britons and Americans are looking to Italy to step in where England's star hospital has "failed". Which might make turning on them over Pisa a bad idea. Rsising people's expectations just to drop them back to the floor often doesn't go well.

Curious as to what Hirano will do, honestly. He's in a lose lose situation, he should never have given up his anonymity.

He could fall on his sword, admit that Charlie is too ill and destroy his reputation. Alternatively, Charlie is well enough to go to treatment and he takes him to the US. His treatment could then fail, which is going to destroy his reputation, or it could succeed in taking Charlie off a ventilator - which then goes on to leave him severely brain damaged, with no real quality of life, and it becomes a million times harder logistically to let him go.

he should never have given up his anonymity

I don't see how he could have hung on to it. The world is not held at bay by a British court saying he shall not be named.

A few search terms from details in the hearing and the press took me straight to his name days before his name was released. And I am not an advanced googler.

I wonder what the judge is going to think of Connie slagging in with the trolls on the Sun's FB page?

I keep thinking I've reached peak Charlie Gard, but it all keeps on and on.

He's gone from it taking some work to find him to everyone praising him as the best neurosurgeon in the land despite not being a neurosurgeon at all. Silly silly man.

Charlie's Plight :(

www.congress.gov/bill/115th-congress/house-bill/3188/all-actions?overview=closed#tabs

According to the official congress.gov account, HR3188 has been referred to the House judiciary committee for review and no further action has been taken. The committee must review it and then pass it to the house for debate and then a vote. Then it goes to the Senate committee for review and passing to the Senate for debate and vote. Then it goes to Scrotus to be signed into law.

clerk.house.gov/floorsummary/floor.aspx?day=20170718

Review of minutes shows that HR 3188 was NOT voted on today or yesterday by the House.

Whatever that twitter account is, I think it was very wrong of them to issue such a tweet. This isn't an issue to be bullshitting about.

Daily Fail has a story.

Released a picture that apparently proves Charlie can see - from the parents.

Also saying that the US:Italian doctors have failed to convince (failed is the word used) that treatment would work.

So nothing official whatsoever.

www.dailymail.co.uk/news/article-4709122/US-expert-fails-Charlie-s-doctors-reconsider.html

Link - sorry it's a Daily Fail one.....

Poor Charlie's eyes point in completely different directions in that picture. He can't even appear to focus on a fairly large toy being held half a foot from his face because of it. I don't know how that's meant to prove he can see.

Weewitch....Charlie's Plight...that pic of Charlie from 'twitter' is desperately heartbreakingly sad.
It shows the extent of the denial, the toys carefully placed in each unresponsive hand.
Dressed in a football outfit..makes one weep, the pity of it. :(
Poor family.

Plenty of completely blind people have open eyes..I'm sure GOSH would know, why would they say Charlie was blind if he wasn't?

Maryz

That twitter account has a blue tick. So if all is working correctly it is the verified account of this guy

So not a parody.

Oh dear. The poor wee chap's head does look small for his age, now, doesn't it.