Charlie Gard 15

[cjt110]

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

Timeline so far

August 4, 2016 Charlie born 8lb 3oz to Connie Yates and Chris Gard.

October 2016 Tests reveal mitochondrial depletion syndrome.
Believed to be only 16th sufferer in the world of rare strain.

Autumn 2016 Miss Yates finds specialist in US testing nucleoside therapy, but it has never been tried on Charlie’s rare type.

January Gosh doctors say drug would be futile because of irreversible brain damage. Parents contact US doctor.

March Gosh asks High Court to let Charlie die. Mr Justice Francis gives parents a month to make case for treatment. Daily Mail readers help raise £197,000 in days to help fly Charlie to US.

April Doctors say he is likely to be in pain. Judge rules Gosh should let him die.

May Court of Appeal upholds ruling. Parents appeal to Supreme Court.

June Supreme Court rejects appeal. On June 27, European judges back decision. Gosh gives parents more time with Charlie. Pope Francis intervenes, followed by Donald Trump on July 3.

July 7 Seven scientists hand Gosh fresh evidence showing higher survival chances.

July 10 Mr Justice Francis gives parents 48 hours to produce new evidence in case.

July 13 US specialist Dr Michio Hirano invited to London by High Court

July 17 Dr Hirano examines Charlie.

July 21 Court told scan results ‘very sad’.

Today, 24 July, High Court due to rule on the case, ten days before Charlie’s birthday.

Social media :)

social media blue

R4 discussing - I do like Eddie Mair

Can't imagine how the media is going to deal with this tomorrow - well I can and suspect it will not be balanced shall we say

im sick of the commnts from the amrcians on twitter no offence to across an othrs
theyre ignorance is astounding

apprntly his insurance didnt cover it!

I think it is rather telling of the general level of interest of Charlie's Army, that out of the 60,000 people online who have bayed for the NHS Staff's blood, issued death threats and caused untold suffering for all those involved in this tragic case, that a grand total of 20 CA 'activists' turned up at High Court with blue balloons today. The most significant and devastating day of Charlie's parent's lives.

To CA, Charlie isn't a boy they truly care for. He's been a cause to latch onto and try and feel helpful, from the comfort of their living room.
I've seen "I'd av been there if I could of, hun" a few times these last 24hrs.

I hope that now, Connie and Chris are given support and strength from the people who do matter, and more importantly, the ones who do truly care about their Son.

For me, the key difference is between the US and the UK. Okay, Hirano wasn't that clear as to what was going on over here -- but then he isn't in the UK, and isn't required to understand our legal system and our attachment to the NHS. And Charlie wasn't ever actually his patient. He made it quite clear if Charlie had been in the US, the only issue would have been are the parents willing (and can they pay????). So, what was going on over here, out of his comfort zone. Yes, he seems to have given false hope, he doesn't seem to have communicated with GOSH and Charlies parents, but then he wasn't employed by GOSH and Charlie was never his patient. So, his responsibilities towards them are not as clear cut, I think. Let's not make too much of a scapegoat out of him. Despite the 'financial interests' line, that is actually fairly normal in research (for example, even if unis own the intellectual property we produce, many academics end up with some financial interest if things take off.) And frankly he wasn't going to get much financially out of treating Charlie given that he is one of only 16 children ever diagnosed with this variant. The TK2 group that Hirano has already been treating looks like a 'better prospect' in terms of results and chances for photogenic results.

The point I guess I'm aiming at is that some parents will always fall out with hospitals, and there is always some prospect of another doctor offering some not-yet-tested possible wonder therapy. So this situation and the whole social media explosion were always going to be there as a possibility. And we can see the way this campaign might go from here -- parents wanting more rights in extremis to go for totally new therapy (easy to get emotional support for that side as we have seen), versus we must let professionals and courts make their considered judgement in the best interests of the child. That is the debate we need to have, not scapegoating Dr Hirano who seems to have got sucked in..............

Couldn't agree more Logical. That said, I'm sure C and C had no idea that the SM campaign would "work" in the way it has; at the start they felt they needed it to champion their cause and raise funds. I can't blame them for that, but it appears to have turned into something else altogether.

The Independent article makes reference to the GOSH statement.

www.independent.co.uk/news/uk/home-news/charlie-gard-parents-lawyer-us-end-legal-appeal-us-experimental-treatment-high-court-life-support-a7857431.html

i just postd goshs statement noone really cares

only parnts tell the truth apparently

WeDoNotSow that is way too harsh

I don't think that the SM campaign happened organically, it was very definitely orchestrated to be 'anti' GOSH, particularly the publishing of Dr details on the page and encouraging of already wound up followers to harass them.

It all got so hopelessly out of hand and not one of the admins stepped in to end it, instead they were encouraging animosity.

It seemed to be so much more than raising money and ended up with vigilantes running it.

I wish the GOSH spokesperson could have read it out on the court steps although of course CA would have just blasted them with the flippin megaphone

Just watched Chris' statement on the BBC website

So for balance, BBC, you need to print the GOSH statement in full

I am astounded at the one sidedness of the reporting.

Logicalpsycho exactly. Perhaps Chris and Connie will attempt to sue GOSH.
But you can be sure of one thing. When the competitive grief over Charlie dissipates, those people who have been screaming the loudest will move swiftly on to their next injustice and the Gards will be left to fight that battle alone.

I think the ferocity of their voice has created a fear of how our society is about to be plunged into riots and anarchy. But the comments supporting GOSH on most of the mainstream media are far greater in numbers than those against.
The rights of children are firmly and rightfully enshrined in British law. All the hysterical postulating from US and Italian far right elements won't change that.
I DO think, that as per GOSH statement, there will be changes to how mediation is approached in future. I also think that privacy and reporting restrictions around court proceedings will be scrutinised.

Where was the link to the GOSH statement?

Online re patents & financial interests; it depends on the agreement between the researcher and the organization sponsoring the research. Some would allow him to be on the patent & thus get money from the sale of the 'product' to big pharma. Some would 'buy him out' of the patent rights beforehand. Some make the researcher agree beforehand that they are giving up the rights to any interests in the 'product' at all.

AcrossthePond55

Thanks love.

I'm really glad you are on the thread, you have answers to questions that would otherwise likely have to be filled in with guesswork.

So many informative, intelligent posts on this thread - so glad that it was allowed to stand.

He made it quite clear if Charlie had been in the US, the only issue would have been are the parents willing (and can they pay????)

But he would also have had to get FDA approval. I know attitudes are different in the US, but I do wonder whether the FDA would have had the same concerns as GOSH had about the ethics of an experimental treatment on a child who could not conceivably be benefited by it.

Ancient there's a link to the PDF here

www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

SomeDyke

I think you made some great points.

We've seen how somebody says that somebody said turns into a game of Chinese whispers. And what has been claimed has on several occasions turned out to be not quite as it seemed.

Dr. H may or may not speak for himself in the future. But I think I might be better off not assuming claims attributed to him, actually came from him. Or at least not exactly the way they are being presented.

Thank you Gin