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.

I've been lurking for the last 15 threads.

Smiling, good doctors in the US don't take advantage, quite frankly. I'm American, I have friends and family members who are doctors at home. They care about their patients, they'd never completely take advantage of patients who are dying. I think the tendency to sweep the entire US healthcare system with the same nasty brush is unfair. It's a heavily flawed system, but there are nurses and doctors who care. They took an oath to do no harm.

Ceto, the FDA would need to approve the treatment, in fact during Hirano's testimony he acknowledged this. It's for ethical reasons, I'm certain the FDA would have had the same questions as GOSH. Other scientists can testify that the treatment they want to try would be ethically wrong.

I'm in academia in the UK, but Ive seen academics with financial interests in their own work, such as experiments and inventions.

"When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. 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. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie. "

..

"It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect."

Thank GOD it's all over. The little boy can rest in peace now.

And maybe his parents can try and resume some level of normality.

They need to stay out of the public eye now.

Though I bet the crazy harpies 'Charlie's Army' will be demanding justice for Charlie and his parents now.

If muscle waste was so bad, why would you need an MRI scan to confirm it?

Oh yes and are on gosh fb slagging them off. Lots of pleas for them to take their baby home from ca and how cruel gosh are etc etc etc.

Because muscle can be infiltrated by fat, and / or become oedematous (is soaked with water) so the overall amount of tissue is the same (or even grows - hence all the "chunky monkey" comments). But its composition changes. MRI is less invasive than muscle biopsy

I don't blame Dr Hirano particularly, i think he did what could reasonably be expected of him. I think GOSH's statement about inviting him to the UK in January is a little disingenuous. Who invited him, on what basis, to do what? It sounds strange to say that he had an 'open invitation'. I'm an Hcp - if i get a referral from a named clinician with patient consent I act on it, but an 'open invitation' wouldn't suggest to me that I had to get involved and i might think that my role sounded a bit vague - I'd want to know more before taking on the case. He's producing some incredible results right now, and that's his focus.

Reflect on what though? They're not ultimately responsible for how people react to their information regarding chances of successful treatment. If anything, it'll prevent them from offering any info in case it's misunderstood. Fewer people may end up being helped.

Poor little Charlie.

Saw someone on the GOSH FB page reply to a poster claiming 'GOSH killed Charlie!' with 'no, Charlie's disease is what killed Charlie' and I wish the newspapers and media were making this more clear. It's just so unfair on GOSH the way it's (mostly) being reported, leaving it to people to read up on the detail and behind the lines to see that this was just a tragic circumstance that was going to have a sad outcome from the start.

Should his parents choose to, I hope they are given help to have a second child who doesn't carry this disease.

It's all so sad. He looks a darling boy and its incomprehensible that he might not have any ability to think, feel, understand. Like being in a coma and not being able to communicate.

RIP Charlie when the time comes.

"It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect."

I think the first part (10) underlines some differences in the UK and the USA medical system and values.

The second, (11) I'm not sure, but might be a reference to how communication, particularly with desperate lay people, can lead to pitfalls. That dry scientific straws of hope can be turned into mighty emotional bales upon which a bright future can be built. And once those bales have been lugged into place by the desperate and a growing group of supporters ... it can be hard to put geenies back in the bottle that best suits their proportions.

It's hard to explain while being indirect. But I am not sure the (perfectly valid in my albeit very layperson opinion) GOSH veiled critisms are exactly in line with what they are being interpreted as.

Presumably because if there is muscle there, it has no tone and just feels flabby, so would be difficult to distinguish from fat tissue by palpation.

I'm glad the judge addressed some of the bollocks flying around on social media. I ventured outside my carefully curated selection of people I follow on Twitter and wanted to give some of the twits I encountered a good shake and just reply to each one with BOLLOCKS! I then realised that I had forgotten to put the veg on for tea and thought better than to waste my energy.

Thanks parallex80

The twits up and down the country will be the ones endlessly challenging the information given to them in their own dealings with health and social care providers. Whilst it's always good to question, doing so from a position of only basic understanding can lead to unnecessary conflict and stress.

Can you imagine a cross section of CA members visiting their gp or local hospital in the coming weeks?

Why would they have to? They have always given facts and stood by them.

Because they will be concerned about potential litigation. Because they will anticipate needing to do damage control on a number of fronts. Even though they've might have done nothing wrong. It's not about lying, I would expect GOSH's facts to be reliable, but spinning is about presentation. I just won't be reading what they write completely uncritically.

Great Ormond Street Hospital have behaved in a dignified and decent manner, throughout. They have no cause or need to use positive "spin". Let's hope that they can return to some level of normality, now.

"The second, (11) I'm not sure, but might be a reference to how communication, particularly with desperate lay people, can lead to pitfalls. That dry scientific straws of hope can be turned into mighty emotional bales upon which a bright future can be built. And once those bales have been lugged into place by the desperate and a growing group of supporters ... it can be hard to put geenies back in the bottle that best suits their proportions."

YES! Back in the day, colleagues at conference etc might have asked questions as to whether NBT could be extended beyond TK2 to other cases. Hmmm, yes, possible, need more nucleosides, might be possible, probably not worth developing the mice models given the lower rate of incidence compared to TK2, but, yes interesting, possible, chance of some effect, some number greater than 0................

Then he ends up in court over here. He probably never intended that to happen, and I'm concerned that he was pressured into signing the letter (after all good publicity for your research and the university/hospital and the POTUS has tweeted................). That sort of pressure I can understand, and would not be surprised by.

But then again, what was he going to say, once he realised that he could formulate the required nucleosides, that a treatment was physically possible -- was he going to say 'not yet' to desperate parents??? Instead, we have the honest 'some number greater than zero' response. I don't think he could get out of it once he had been sucked in. I don't know, I would be interested to see if he ever makes a statement about it.....................

I've just read c&c's statement.

It really isn't helpful, is it. Blaming gosh for leaving it too late, hinting that the mri's and eeg's in april showed a healthy brain. Saying hirano and their medical/ legal team weren't given access to the scans.

I'm fairly sure legally both sides must be given access to the others documents. Gosh will have had to share charlie's medical info if requested.

Plus the "if you knew what we knew" line.

Bottom line is charlie never had a chance at survival. A "normal healthy boy" was never going to be. A "normal healthy boy" does not need ventilation.

I am appalled. I an sympathetic, as ever, they seem to want gosh and the dr's to hurt as much as they do, which is normal in grief.

They need some bloody good counselling now though.

In some ways i hope they do try litigation. And they court spells it out to them that charlie could never have been helped.

I can see this rumbling on in 10, 20 years time, like sunaina choudhary*, where the family just don't give up, whatever the cost.

*please be careful with google. The family have put up pretty horrific photos as part of their "nhs murder" claim.

And if anyone dares propose "charlies law" i will get up off my fat, apathetic, apolitical arse and get down to parliament with my own personal army.

So, a world leading hospital and its staff.
The NHS.
Our system of Justice.

All maligned.

Far-reaching indeed.

Gosh's position statement is excellent - lucid, clear and compassionate. It also coldly and factually sticks the knife pretty deep into the esteemed Professor Hirano

It does indeed, and I hardly think the views of the experts at GOSH can be blithely swept aside as "scapegoating" in the way those of MN posters have been

I appreciate that financial involvement with research isn't unknown, but when Hirano's interest is taken along with all the issues, I believe it raises concerns which I'd personally want answering

On another note, I see that Connie posted hers and Chris's statement on the CA site little more than an hour after leaving court, which surprised me a little. We're all different of course, but if I'd just been through what they have I doubt I'd find myself able to even think about social media

Agree with that, somedyke. I don't think he was the evil figure with the twiddly moustache that some seem to ...

, I would be interested to see if he ever makes a statement about it.....................

Yes. Me too. I would be interested to see how wide the gap is between what has been attributed to him by laypeople, and what he means when he speaks in his own words. And not via the filter of twitter. Cos... I can't be dealing with this 140 character stuff. Too condensed and you're never sure if you have understood the whole meaning or not.