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

TinselTwins, I agree Tinsel a break off socail media is probably what they need right now.

That Express headline is supremely weaselly. At a pinch, you could claim it meant 'doc says he could treat Charlie after examining him' (I.e. not without examining him first), rather than 'doc, after examining Charlie, now says he could treat him'.

I can't decide whether it's really sloppy writing or really disingenuous, but grrrr.

Darth - there was a thread this morning asking where these threads had gone, it turned into a bunfight, as several people came on to say that basically these threads were disgusting.
It got deleted very quickly

Well someone ought to complain about that misleading headline in the express!

Thanks for new thread.

It will be next Monday I think, before judge rules.

Deletion message here...

www.mumsnet.com/Talk/am_i_being_unreasonable/2981650-Where-are-the-Charlie-Gard-posts?

Press complaints...

www.ipso.co.uk/make-a-complaint/

jinglejanglejobs You were asking about ethics, I did post earlier about possible ethics approval in this case. I am a medical researcher (that involves patients and on occasion life changing decisions about how our research will be applied). I spoke to a couple of friends (who know the ends and outs of medical ethics) about this case and it could be approved very quickly on a one case exceptional basis.

As up to 33% of the committee will be lay members it could throw and interesting slant on the ethical approval (this is assuming the research would take place in an NHS governed facility)

OMG this was my thread and I missed it all. It was a really simple question! I have been following the threads religiously, and occasionally commenting and thought the whole lot had been pulled. I was unable to access mumsnet yesterday as I was at work.

Why on earth a simple question turned into a bunfight I do not know!

Writerwannabe83- there are very strict rules and regulations regarding experimental treatment. A lot of research has to be done beforehand, than it has to be tried out non cells, living organisms,... human trails are really only permitted once its been documented and proven to work. That takes time, I don't think poor Charlie has this time.
(Please correct me if I'm wrong! Or someone more knowledgeable can give better information.)

Nelliebuff They're going to need FDA or EMA approval on top. He's going to have a hell of a job proving safety and efficacy without so much as a mouse model with encephalopathy.

My dad is on his rant again. He believes the Gards have the support of the vast majorty of the country and those who are opposed to their viewpoint are a disgrace. If he could use a computer he would be right in the group.

I thought the point was that treatment on Charlie was going to be allowed to take place regardless of there being no evidence of it working on cases like his or without any previous testing having been done as long as the American doctors and GOSH can agree that it's worth a shot?

I did make the Save Charlie campaign look bad through by saying they fiddling the petition's. Well it has a basis of truth.

@BeyondDrinksAndKnowsThings and @redshoeblueshoe

Thank you.

I won't pretend that there have not been a few posts that I have raised an eyebrow at or (far less so) reported.

That said in the context of over 10k posts I think the discussion has been overwhelmingly supportive and informative.

I'm particularly grateful to the medics, ethicists, researchers and most of all the parents who have faced such an agonising choice and those whose children are affected by mitochondrial disease and shared their wisdom and experience.

writer he can still say no the supreme court ruling still stands

just because a doctor wants to experiment doesnt mean the judge will agree

Levels of drug development...

Thanks for the new thread - anyone else want to close out the old one?!

The Express want to be very careful, I'd love the Judge to hold them in contempt for that headline.

Writerwannabe83 no, the American doctor himself has admitted he's going to need FDA approval (his nucleoside trial is run on US taxpayer money). That's what makes this even more difficult. They could potentially get to where they're legally allowed to put Charlie into the trial but where he can't actually administer the medication for a good while because it's not approved.

I think that c&c are having a break from social media, they must be absolutely exhausted both physically and emotionally. I really do feel for them. Such a sad situation. It really does not pay to make things so public. I send prayers and thoughts to them. Whatever decision is made they have fought a valiant battle for Charlie no matter what we think about how they did it. I don't think there is any sinister reason for shutting down their fb pages other than needing a rest and focusing their energies on tomorrow and next week.

I don't think the US doctor will come out with a big dramatic man from delmonte YES or NO

I think his "answer" will probably be broken down:

Can the medication be administered to Charlie: Yes, it probably could, he has a feeding tube and is absorbing other meds that way. This is where he would answer blood/brain barrier questions

Would the medication improve any of Charlie's cells: Again, yes, it'll probably have some effects on some cells, nobody ever disputed this. This leads on to which cells and estimating what sort of improvement might be expected.

Can the meds be legally given in the UK

And finally, does he agree with GOSH that a child this ill is beyond any life prolonging treatment.

Even if he says no to the final question, and is ultimately in agreement with GOSH, CA will cling onto the technical yeses parts and be blinded by that. He might disagree with GOSH on that last point though who knows.

I wonder how the CA will react if the American Doctor and GOSH Doctors both say they think the treatment may be worth trying but the Judge still says no.

Do you think a Judge would actually do that though?

I can't understand how if various medical professionals are all in agreement (hypothetically obviously) that treatment should be trialled, a Judge with no medical background can simply say no and thus effectively be solely responsible for the passing away of the child by ordering life support to be stopped instead.

What a huge burden to bear!!

jinglejanglejobs There has been precedents before when HIV research was in it's infancy. At no point did I say this was normal ethical approval (which it is not).

Let's not get into a bun fight over ethics.

If the American doctor says he's willing to treat Charlie and he convinces GOSH doctors that it's worth a try then does it mean the Judge doesn't have to do anymore? After all he can't say no to it goubg ahead if the American doctor wants to try it and our doctors have acquiesced? Can he?

Could he not put time limits on it? E.g. ONE round of meds, if not successful then no more attempts ever.

They could potentially get to where they're legally allowed to put Charlie into the trial but where he can't actually administer the medication for a good while because it's not approved.

But hasn't it already been said that approval can be fast tracked if it is thought the patient needing the drug is unlikely to survive 90 days without it?

I'm just curious as to how long it could realistically take for treatment to start if the Judge does give permission to go ahead? The CA seem to be under the impression that it will be near enough immediately.