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

The threats to murder the staff were bumped by Cy and Lg, they were kept up untill the judge warned them, then they were deleted, but only because the judge said so, the other threats just the same, and even though the judge warned them, they still made accusations against Gosh saying they were poisining charlie ect.

GabsAlot, it doddnt actually work out at 10% though did it? was it not something like 00.01%?

diddnt

The daily fail have just announced that child now has us citizenship so that he can be taken from uk to us.

Such shocking reporting, the child is in the jurisdiction of the uk and cannot just be taken over there.

There have been people on these threads stating that Charlie's parents don't care about him ( I did report that one) and that they are reveling in the media attention.

I think they ARE over-invested in the public attention now in so much as I think they would struggle if it all disappeared overnight

I posted on a previous thread that I think the fundraising is less about the money and more about seeing the numbers of contributers steadily tick up

In a helpless situation its a normal reaction to try to control something, but CY is trying to control the CG public image, and that's impossible now that it's out there, you can see this last night in her posts trying to correct people who wrongly said he was brain dead "who said that?"

I think the public attention she's had so far has blinded her to the potential of more healthy, more private support groups

I DO think she is addicted to the social media attention, but not in a "loving it" way - look at how long she lasted with her profile disabled? And the statement that was carefully written for her indicates advice to be noncommittal, but a few hours later she's "fighting" for charlie in the comments section of the Sun!!

I've just seen that too Rac. If the parents try and move him I hope they have to take full responsibility themselves for him if anything happens during the journey

I do think that if there is a chance to move him, GOSH would likely consider letting him go just to stop all the hassle! I don't think it would be the best thing for Charlie though.

Such a sad case all round.

It's not the best thing for Charlie and the medics must be feeling that very strongly to oppose moving him.

I do wonder if they should just let them move him though and end this debacle.
I feel worn down by following it, they must feel a hundred times worse, especially with the bullying online.

The daily fail have just announced that child now has us citizenship so that he can be taken from uk to us

To me, this sort of thing (and the hijack of tragedy by religious and political fanatics) is why this case is worth discussing

1. Citizenship was never on the cards, PR was
2. If he was now a dual citizen, which he's not, America wouldn't get to override decisions made about him in the UK, that's not how dual citizen ship works

none of that matters though, not a jot! which is shocking!

I feel for the Amercian citisens that cannot afford healthcare, espcially with Trump and his antics over Obamacare, I have read on other sites where some Americans are really fed up that their own are not being looked after yet and English baby can, and that is true, how can trump do that? surely he should be looking after all the children in the Usa.

The blue pictures issue matters because it reduces to do we want facts, and how do we verify those facts, or do we want more comfortable/comforting lies? The doctors and the judge in this case all should have the same facts, but their assessment of the meaning or importance of those facts may be different. It like the repeated 56% figure.

As regards the continued discussion people are just discussing because it matters to us all how these things are done, because it could be us or our loved ones in that situation, and in many cases bravely shared on here, it has been. This is what our current law says and this is how it works, so are we happy with that, or not? Those who say it's not our business, it is because it is the law that exists here voted for by our representatives that is not letting charlies parents do as they wish. It is the ethical training and frameworks introduced to professionals in our universities and medical schools and hospitals. This is being done in our names, and if enough of us don't like it, they need to campaign to change it. But a campaign based on lies.......seen that before haven't we!

I feel for the Amercian citisens that cannot afford healthcare oh that's only because they want something for nothing and are lazy and work shy and want the hard working to pay for them.
But they must not abort babies they can't afford to raise

^ says CA-USA

Friendly snake

I respectfully wish to point out that at no point have I called for this thread to be taken down, nor have I called it disrespectful.
I would be so sad to see the thread go as I feel in the whole it has been informative and debateful. I particularly commend those who posted the in court tweets for us all to read and those who reported some of the truly offensive CA Facebook comments.
I'll bow out now and just retake my "read only" stance.

The daily fail have just announced that child now has us citizenship so that he can be taken from uk to us

Can somebody double check in case a lack of sleep (bloody nocternal birds went on mass sing song last night) .. but I can't see where they provide a source for that fact,

Nor can I find a US news source reporting it.

In fact (and this may be poor googling on my part) all I can find is the tweet/facebook post Maryz linked to from the Nebraska congressman. And he just says it. Doesn't link a source.

Is it possible the parody twitter account made a claim and nobody bothered to check veracity before running with it ?

Please tell me we are not so deep in post-truth that such a thing is possible.

Can somebody more awake have an online poke about and see what reliable sources are also reporting that the amendment was passed.

Just seen the mail's headlines
..

Getting to the point now that if they don't allow Charlie to travel the backlash against GOSH will be immense .

There are some seriously unhinged people who might want revenge against gosh.

What A sad sad situation

Outrageous interference by the US. There are a lot of people in government and the law who are going to be furious about this.

Feelingthestrain, you do not have to go anywhere, nobody is asking you to leave.

Oh yes good point - if it's true!

If it is - cue major diplomatic row.

sigh

it doesn't even matter any more online
So long as it's posted on the internet it seems it can be taken as fact

Mucky, my maths was wrong as I counted a quoted figure twice (10% off vent and 11-56% musc improvement were actually the same figure in the stats)

So minimum of 5.5% chance (50% of 11%) of crossing BBB and improving muscle function, possibly enough to come off vent but no bike riding - using figures for a different mtDNA disorder

BeyondDrinksAndKnowsThings, at this time in the morning that looks a bit complicated lol

true mucky i think she did actually say up to 10%

citiznship doesnt mean a thing it means he can live in america if hes allowd to go-which he isnt as of today

Feelingthestrain and I respectfully point back to you that I said none of the things that you align to me. Thanks.

I'll bow out now and just retake my "read only" stance

Please don't.

I am somebody who pre-diagnosis was only too suspectible to CA-esque passions and tightly hugging causes on a non factual basis.

Now I know why and how I did that I have strategies. But people like me tend to do better when in an environment where a range of views and perspectives are presented. Which is why MN is 9 times out of 10 my first choice for posting rather than lurking.

Thinking through the wider range of perspectives that are typically expressed here helps keep me on the straight and narrow "sticking to the strategies"-wise.

The latest picture is so awful. Where is his dignity, where is his right not to be paraded like this at what is so obviously the end of his life?

People who are US/UK dual citizens have pointed out on earlier threads that it means precisely the square root of fuck all when in a legal/medical battle in one of those two countries.