Charlie Gard 14

[GabsAlot]

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):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Also they are cases where fundraising might be benefical which will then be banned.

A few questions for everyone to ponder - how do parents raise money without publicity? How do you then have privacy and reporting restrictions when the name is already in the public domain? How do you stop international tweets from Trump etc? In short, how can campaigns and privacy go together? Even with the GOSH staff not being named in court, people who wish to abuse them know who they are. It's impossible to control when parents go public. As the article makes clear, not everyone chooses this route.

That's the crux of that particular issue that's arisen from this case, isn't it? I don't see how it's possible to reconcile the interests of the family who need to fundraise, and the issue of retaining the privacy of 1) the child/ren in question who are reliant on people around them acting in their best interest and 2) the medical professionals involved in their care. And then the wholly separate issue of cases where the best interests of the child become a secondary concern to the wants/needs of those responsible.

In my own extended circle I know a couple who have children with an extremely rare condition, and thanks to fundraising they have been able to survive while being unable to work due to the gruelling treatment schedule they've faced, and buy their own home which is perfectly adapted to suit the needs of the growing children. For this reason, I have every sympathy for the parents and their urgency to raise the money they felt they needed to give their son the best chance. But here my overwhelming feeling is that the requirement for privacy and sensitivity in dealing with the case trumps that.

I'll be keeping Charlie and his family in my thoughts today.

Maryz I agree that tweets should be copied word for word.

Who are people planning on following, the BBC fella or Jim from Sky? I think the Sky fella added his own observations whereas Joshua (I think) posted quotes only

I am dreading my dad's reaction. I will get a full on rant, full of expletives and racism if the courts go against the parents.

BubblesBuddy Thanks for info.

I am dreading my dad's reaction. I will get a full on rant, full of expletives and racism if the courts go against the parents.

Racism?

What's racist about this case

He rant that a non white child would be saved due to the courts being scared of riots.

is the judgement likely to be today or tomorrow?

and did they publish the results of the latest scans or were they still letting C&C review them first?

I do think CA is symptomatic of divisions in society.
I have read we are living in a 'post truth' era where everyone's opinions are equally valid irrespective of whether or not they can be proven to be true or factual. So if I say the world is flat and you say it is round my opinion has equal weight to yours.
CA seems to be a good example of this.
Post modernism in art is cited to have begun in 1917 when Duchamp's urinal, signed R.Mutt, was hung in an art exhibition. His explanation was that, as an artist, if he called it art then it was.
Politicians seem to be playing on this viewpoint and I find it quite fascinating.

it is possibl though

rember the famous singer injunction case we were not allowd to name them no matter what doesnt matter that othr countries had england wasnt allowed to so it can be done

Thanks for that article AccrualIntentions. It also contains some interesting links, like this one to the publicist's story

It does appear that there was a severe breakdown in communication between the parents and Charlie's doctors and, from my 40 yeras experience in nursing, I can well believe that this happened.

Had there been a formal, possibly judge-led, confidential mediation process, such as Judge Francis would like to see, perhaps a much of this could have been avoided.

I know it's OT, but while I'm flitting between threads here I can't help but notice parallels between this and the "popularity" of the self-ID law proposal. More SM virtue signalling and ignorance of facts...

11122aa not easy and probably wine to make listening to the rant easier

It certainly used to happen with older patients in ITU where I worked, we had security guards with one patient due to the family disagreeing about prognosis amongst themselves.

Writerwannabe83 I know that Lapin was quoting.

Great interview with Dr Ravi Jayaram on BBC news, about shades of grey in medicine (and how "research" improvement may not be the same as "health" improvement) and social media making it "good vs evil". Emphasising unproven treatment and that people have forgotten about "the rights of the child" being separate in uk law.

Recent photos being shown too, some that I haven't seen as I'd been avoiding the more recent ones.

NellieBuff that prayer is beautiful and has reduced this old atheist to tears.

How strange and yet how fitting that it found its way to your inbox so that you could share it with us.

I think we should all know their rules before the Court Case starts so we don't end up having the thread deleted

I agree more clarity would be good, but also wonder whether the number of hits the site will undoubtably get today will have any effect on whether threads are deleted or not?

On a similar subject, would it worth avoiding posts along the lines of "look what they're saying on CA!!!"? I imagine everyone's capable of accessing CA's craziness if they want to, but doesn't mentioning them on here bring the discussion into the danger zone, so to speak?

Smilingmind - yes I do agree about this post-truth era. It's only recently that I've sort of got it. I was discussing it with a friend and we speculated that society was becoming polarised with knowledge at one end of the continuum and feelings at the other end.

I'm paraphrasing a quote, 'The great thing about science is that it's true whether you believe it or not'.

My DD has been reading The Emperors New Clothes and that fable keeps coming to mind.

Someone asked what sources they're following for the court case and I'm going with @JoshuaRozenburg.

Really good, easily understandable article greengoblin.
Shame the press did not read something like this. But then they would not want reality to get in the way of their publication figures.

Maryz, I thought it a few days ago, it's taken a while to get irate enough to say it aloud