Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

In the rush for medical progress and we can cure anything attitude, sometimes we have to stop and say should we? When improvements to life may be negligible.

I remember my music teacher saying well done, well played the notes were all there but not neccisarily in the right order smile

A line which your music teacher stole from Eric Morecambe, or whoever wrote it.

Ellie the American doctor didn't seem that keen to come over, so it seems unlikely he is just looking for a guinea pig.

Sirzy I don't understand how the expert can give any figures regarding Charlie's case because he hasn't conducted any tests on someone with Charlie's type of Mico and brain function.

Yes lightlovelife he did seem rather hesitant, and being as he hadn't bothered to read court notes etc, not that interested in the case either.

Is it ethically right to wait if the treatment is not at point where the chances of it having a significant improvement are higher than a small percentage? And how long do you wait? For acceptable trial results if the patient is in pain

I don't understand that either. Especially where his is the first case that has needed to cross into the brain which is a massive part of it.

Basing numbers on previous trials in very different circumstances seems about as much use as plucking figures from thin air

I don't think parents have the right to make that call (on waiting) although I know many will disagree and that is fine.

Ethically as far as I am concerned, especially with such major things as this, you need to wait until it has gone through the early stages of testing (mice etc) before even beginning to consider experimenting on a human. Especially one who can't give consent and nobody can guarantee he isn't in pain now and that the treatment wouldn't add to any suffering. He is a child not a guinea pig.

I can fully understand how frustrating it is for the parents. But realistically their is no evidence to suggest this would have any positive impacts upon his quality of life - something they have themselves acknowledged that he doesn't have.

Well its got me thinking after my last post. What if the judge knows not much will come out of the experts visit and is just covering all bases.?

They seem to think it's his outside chance but it isn't

Sirzy the parents acknowledged Charlie's poor quality of life at the first court hearing, but they seemed to be disputing that last week.

I've suspected that all along if I'm honest @Sostenueto . I suspect that the Judge has some suspicions about the US Dr's claims and bravado and about American commercialised medicine as a whole, IYSWIM.

Hirano didn't seem that enthusiastic in court and went to bits a lot when questioned thoroughly. Nope I don't think the expert has enough evidence anyway.

Agree serf.

In court on Friday, Gollop says 'So Charlie would be the first experiment?' Expert answers ’Yes'. Clearly there's context around this, but I found that bit really shocking.

Technically he is right. The only way to see the effects of a drug is to try it in a biological system.

Trouble is the only biological system he has available is an 11 month old child called Charlie who cannot ever give consent.

I am a researcher and am proud of my profession. I recruit patients into my trials (not drug related) and I, my staff and the nurses and doctors working on that study spend a lot of time explaining the study, seeking the patients consent and answering any questions. We are trained to do this and operate under the regulations of Good Clinical Practice - which each of us undertakes every 2 years. We seek advice from the ethics ctte and if they do not approve a study then it doesn't happen. We work under the research governance framework. We are constantly checking with patients about whether they are happy to continue taking part and they can withdraw at any time.

Before we even start planning the research we will take out ideas to patient groups. We have often made changes to protocols adter these meetings. We have a trial steering group and a trial management group. Our progress is constantly monitored.

This is the case for all trials of this kind in the UK.

What we do not do, ever, is allow a doctor to come in and give an experimental drug to a patient without capacity just because there's a slim chance it might work.

Deux it would have been intended to have exactly that impact, that was the point of the question and elicited the only possible response, as the barrister knew it would.

Absolutely as it should be Zeekzeek.

Sostenueto (sorry if someone has said this, have skipped reading all the new thread) I think the judge expects nothing to come of the expert's visit other than to dispel the possibility of the treatment being agreed by the US doctor once he's seen Charlie and met with his UK colleagues and the parents.

It makes it all the more shocking. I just can't see how this could go ahead ethically.

Regarding timescales, Hirano stated he would need FDA approval, ethical approval and goodness knows what. Can that really be fast tracked?

It all just seems so dystopian. Is it at all realistic?

So zeezeek do you think it unlikely that the treatment will even be approved for use on Charlie whatever the American doctor says?

Sorry crossed posts. I realise Gollop's question was provocative but that's the heart of the matter. Experiment on a baby.

One thing about Dr H is that it looks to me like his specialism is actually much more about muscle than about mito. On his page it looks like he is trialling nucleoside because it's actually a very good test for how muscles work/don't work. That doesn't mean he doesn't know an awful lot about mito, but if he's coming at it from a very diffren direction it would explain why he hasn't really bothered too much about this case before.

don't understand why those like myself - and Charlie Gard's parents - who want to fight for their children, are not given an opportunity to do so.

I think this is routed in the general British fucked up idea that death is never okay and is to be avoided at all costs, and that death can be avoided by being brave/strong/a fighter.

Death is not the worst case scenario

Those that do die, died because they were too ill/injured/old to live, not because they weren't good enough at willing death away from them (or in the case of PICU, because their parents weren't "Brave" enough)

We see this all the time with cancer sufferers, it's so insulting, like the ones who didn't make it just didn't want to live enough

So what about babies who don't have loving parents at their bedside (it happens, addictions etc). Should they recieve different medical care to the parents who really really really can't accept that sometimes death is inevitable, and even a blessed relief?

What if the mum and dad disagrees, and one wants the child to live at any cost, and the other can't bear to see it suffering indefinitely?