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.

No problem red, it's usually me doing it as I can't type or refresh quickly enough ! I'd forgotten that RW is now Lord

Professor Hirani has come out of this very badly. GOSH asked him to visit in January but he didn't bother until the court requested him to in July, yet he felt able to comment on Charlie's condition between January and July??? And there was a financial conflict of interest too? Very shabby.

GOSH's statement is excellent.

I've just heard Charlie's father after the judgement and he's still saying that if GOSH had treated Charlie sooner, he would have been 'a normal boy'. Very sad to think he believes this.

The GOSH position statement is excellent and clear. Particularly that they had been in contact with Hirano since December. I think their statement makes it clear that they followed the rules (hence seeking emergency ethical review when NBT first suggested), then stopped the process once the fits and brain damage.

I actually support Connie making the statement. Transparency. Let then spend the money they raised on trying to sue GOSH if they want, let them campaign, perhaps, for a change in the procedures that they saw as causing the delay. GOSH will then at least have another chance of re-stating their position, although they have done that very well in the position statements so far. And let Judge Francis have his idea taken up that more mediation rather than an adversarial court process is the way forward.

Like it or not, this sort of thing was always going to happen at some point, given the changing social circumstances, so it is a discussion we need to have as a society, when and where and if we let emotion triumph over facts, parents rights over childrens rights, how the relationship between doctor and patient is handled, do we want to have a more US-style approach, or do we prefer what we have????

But overall, I'm proud of GOSH and their doctors, and I'm proud of our legal principles and our legal system. The emotional mass hysteria and conspiracy nonsense will continue on the internet, but then it would anyway. The system has worked (eventually) for Charlie, and he, after all, is who this was all about...................

Damning statement by gosh on hirano. Bloody good show. I think that gosh or rather hope gosh can ride this out. Thought it bad form by the parents but at this time we have to make allowances for them tragic the whole thing tragic and needless. Feel for parents being so misled by hirano. Shameful. May Charlie and the parents find peace. This awful backlash on gosh has to stop right now, our gutter press are precisely that!

Hinaro was invited over in January, why on earth was did he not come???? and instead he has left the parents with ifs and buts??? the only person to blame here is Hinaro.

Just watched Chris's statement had tears in my eyes, so heartbreaking :(

Just listened to CG saying that if treatment had been sooner Charlie would have been a normal child??

I have just read Connie's full statement. Oh, God. How desperately, desperately sad. And in all likelihood, she and Chris will never accept the reality of the situation.

I know it's not the same at all, but my mum has dementia and formed some delusions. Nothing anyone could say, not even the evidence of her own eyes could change her delusion and make her see reality. When confronted with absolute physical evidence, she would come to reality for a second but then she could reason it away. The power of the mind to believe despite the facts, whether that belief is a result of illness or the result of emotion, well, that power is simply beyond our imagining.

Point 10 on the position statement is very clear and should be widely reported! Hirano had not
Read Charlie's medical records, his scans or the 2nd opinions of the many experts who had actually examined him. He also had financial interest in the nbt compounds he proposed prescribing charlie. Unforgivable

GOSH position statement has not been tweeted nor posted on their FB page

I think a lot of (rational) people will be pointing the finger at Hirano and asking why he didn't come over in January, why he carried on encouraging C&C, why he was so trusted despite his financial interests in the situation. The man has done a lot of damage. Just think of the pain and suffering that would have been prevented if he'd just made the effort to visit in January, review the actual medical notes and scans and decide then that Charlie was beyond treatment.

farfallarocks indeed, why is this not being reported? I am dumbfounded at the lack of accuracy floating around still online, what more could GOSH have done to clarify it.

I don't know how they could think that.
Their son had such a severe condition... none of the other babies with the same condition lived past infancy.

I could understand thinking the treatment might have have improved Charlie's quality of life (which is what Hirano was saying in the July hearing although with very vague stats as to whether it would work).
But to jump to potential improvement=normal life?

I don't get it.

The judge was clearly hoping with time and further tests the parents would realise they needed to let their son go.
Sadly I don't think he realised how they would turn the argument.

I predict a bad lawsuit and a campaign to increase parental rights.
And there is no way GOSH will see any of the 1.3 million...

Also the other thing I don't get- they kept saying they wanted to move Charlie to another world class hospital, but one that had a specialist in Charlie's condition (as per Chris' statement).
Am I wrong in thinking Charlie's consultation had over 20 years expertise in mitochondrial disorders and had seen/treated at least one of the other 15 babies who had Charlie's mutation?

yah and the rest of them are on sm slagging off gosh

i know hes still a patient but gosh shold have been abl to speak in court so it wasnt so one sided

It seems to me that Dr Hirano has a lot to answer for.

Consultant not consultation. Random auto correct.

Looks like the DM have edited their report, but I have a screenshot ...

It is a different world in the USA. They treat financial interest differently from here. The judge basically ordered Hirano to come. It is not new news that he hadn't visited or seen and notes. Sadly the parents are blaming GOSH but that's been their position all along so I would think mediation would not have worked either.

Thank you to the pp who linked to today's judgment. I'm sorry I can't scroll back to mention you by name.

It's an interesting read. Link below as I know the thread has moved quickly this afternoon and some posters may have missed it earlier.

www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf

Maryz, it was wicked though and cruel what Hinaro has done to them poor parents, all for his experimental reasons, Hinaro would not give a flying fig about Charlie, just the mega bucks he would have made if any. For the parents to think Charlie could be normal, thats just wrong on so many levels.

yamayo you aren't wrong. Outside of the US I think the team in GOSH are one of the most experienced in Mitochondrial disease.

Wouldn't that be a way to shut the BA up though, if C&C donated the £1.3m to GOSH. I know I'm more likely to win £1.3m in the lottery than see that happen but it'd be a slightly suitable ending to such a tragic story.

Do medics have disagreements of this sort of magnitude (although perhaps not so publically) and just keep on working together for the greater good despite any previous tensions ?

I've seen them work together despite massive tensions (affair at a conference...). Depends on the case and whether they really needed to.

They didn't do it if someone else could have gone in their place.

From GOSH statement:

Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

I just want to clarify that it is not uncommon in the US for a researcher to retain a financial interest in any pharmaceutical they develop. I expect its one of the reasons they keep doing the research in the first place as university researchers aren't normally paid 'the big bucks' and their work is financed via govt grants. But it is expected that they act responsibly and ethically nonetheless and there are regulations and controls on this both in medical ethics law and FDA regulations.

Someone I know had a baby with a mitichondrial disease far les severe than Charlies (genetic mutation with one component of the respiratory chain missing, not the entire mechanism of sustaining it missing) and the baby dies at 8 months old.

If they could have given him the experimental treatment when he was born, before he deteriorated at 8 weeks, and by some miracle it had propped hsi own cells up - how on earth does anyone think this would equate to a normal life and riding bikes? He would have had to have been kept on it forever, even if side effect/allergic reactions/ infections developed. and it would only have ever been able to have delay the eventual degradation of his own cells (even assuming it had worked). He would always have suffered severe mitochondrial depletion at some point, I think anyone that understands the biology can see that.