Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

flimflam I completely agree.

"You can't raise millions and then move the goalposts"

You can do pretty much what you like with crowdfunding

I think CA is a scary insight into the widespread ignorance of the population, scary stuff and I agree about being worried about the longer term implications for the NHS. The press reporting has also been on the whole, diabolical.

The total disregard of any facts seems to be the norm now ( this is why referenda are a bad idea! )

JaneEyre70 the go fund me page does state that there is no guarantee that the money will be used for the intended purpose. It's a risk you take when not a registered charity.

Also, a lot went straight to the bank account, no one will ever know how much was raised over and above the 1.6m or whatever was online.

I really hope that it's not used against our NHS

I lost a baby once - went through the whole was it worth it to operate/suffer/struggle thing. Hypoplastic left heart. Before it happened to me I was very opinionated about what other people should do. In that situation I learned an important lesson - empathy. I'd still do the same - I can say in all honesty I'd let my child die with peace and dignity because it's what we chose to do - but for the first time I had the lightbulb moment that my way wasn't the only way.

It's a horrid place to be mentally with people giving you false hope and conflicting messages.

Dd1 is now on a medical ethics PG course after her law degree - many a discussion has gone on into the night. There's a little boy at the heart of this. Love to his family, even though I can in all honesty say I'd have done exactly the opposite. Thinking of them tonight.

Think charity is going to be called Charlie's legacy

Unless there's another similar post, I think I know the one you mean.

She's not admin, just a member. The member's have got used to making confident statements of facts based on ... stuff they feel in their head mostly.

So it is entirely possible she is talking about what she thinks might, or should happen, rather than something that has been decided.

Or... the back channels have been buzzing with semi-offical news and she has dropped a right clanger by revealing something that hasn't been announced offically yet.

I'm plumping for the former rather than the latter until I hear differently. To some extent I think the extended family was deeply shocked by the strength of feeling after GOSH made the statement about death threats/harassment. I'm not so sure they'd be keen on placing themselves directly in line for more of that. Which is what would likely happen if that plan were put into action.

Is crowdfunding same as pledging money & if it's not going to be used for the said goal then people can 'un-pledge'. There were also dad's bank details on their for direct transfers- I suppose those donations cannot be 'un-pledged'.
These parents have an opportunity to make something positive come out of their son's short life which has touched so many people. Hope they get a break form all this, grieve first, get proper support / counselling and slowly start rebuilding & thinking what they want to do with all this mine in their child's name.

I,m always wary of crowdfunding for medical treatments as often the treatment is not proven or researched or even verifiable. Their clinicians say nope thats not appropriate/its snake oil but family start fundraising. Usually they don't get the media coverage to enable them to raise enough funds, but often they still get a fair amount of money. None of this money is held in charitable or audited accounts and there is no transparency over what happens to funds. I,m also aware that often you don't hear the full story on why treatment has not been offered or has been refused so the stories are very one sided.

The interesting point for me is whether the point at which the court intervenes changes when parents and clinicians disagree about what is in a child's best interests.

If an identical case were to happen in future, I imagine that it would be quite tempting for the clinicians to just allow treatment to go ahead, on the grounds it's better for the child than undergoing a protracted court case.

I hope it doesn't turn into another "medical decisions by social media" issue, where the people who shout loudest get their own way even when the clinical decision has been made against treatment.

Sorry for your loss, going :(

mommy No, I'm pretty sure it's just giving as opposed to pledging .
So, once you've made that transfer, it's gone.

If I have the right Italian doctor, I'm not sure he's a clinician either (Head of the Laboratory of Molecular Medicine). Looks more of a research bod like Dr Hirano and, again, has not examined Charlie.

Someone gave their pension pot of 40k didn't they?

so if chris claims are true an dr hirano still wants to treat him why hav thye givn up and said its too late?

I've just caught up with today's events.

I'm glad C & C made the decision themselves in the end. I hope all we hear from them in the near future is a brief announcement of Charlie's death, and that they then take time to grieve privately.

I like Francis J's swipe at Trump, without naming names, in para 11 of his judgment today. One thing I take away from these events is a great respect for him and the way he has handled the whole affair.

Trying to be fair to Dr H, he never promised that his treatment could make Charlie a normal healthy boy, did he? No-one has ever suggested Charlie could recover to that extent, AFAIK.

The most Dr H offered was that it might effect some improvement. The rest seems to be C & C's wishful thinking. I agree he didn't come across well in the cross examination, but I don't think he realised what he was getting into.

In case I don't post here again, I'd like to thank all those who have shared their expertise in the medical, scientific and legal fields. My respect and sympathy to those who have shared their personal stories, and to those now dealing with illness, their own or family members'.

There is no discussion left now really, it has all been said before. The outcome was the right one.

Thread will just move on and disappear organically I think.

My deepest sympathy to the parents family and the child.

I really hope it doesn't end up in more litigation. I will be very cross if it does.

TBH GOSH did its very best, but family were not listening or maybe they did not want to hear what was being said.

Just caught up with the last 10 pages.

I'm thinking of C&C tonight and I hope they get the privacy they requested and have some quality time with Charlie before treatment is withdrawn. I would like to think his passing could be done privately, the same regarding a funeral, but with all the media attraction I'm not sure that will be achievable. What a very sad day it's been

I think dr h is coming from the us angle, where parents do have rights over a child.

If someone wants you to treat their child, and can pay for it, that is absolutely their right to get that treatment.

What is best for the child is less important.

Presumably us clinicians need to bring in paying customers to, refusing would be bad for business.

So when dr h is asked if he will treat the child, the answer is yes, if thats what the parents want. Charlie's condition and chances don't come into it.

Again, so glad for the nhs where dr's are free to make ethical choices.

Yes it would be nice to think that the media will leave them alone but I suspect that this certainly won't be the case.

Newsnight now, wonder if they will discuss? Dread the papers tomorrow.

I agree that these threads will naturally dwindle now which is quite right but I guess it depends also on what happens in the coming days?

"I think dr h is coming from the us angle"

Yy. Cultural differences again, innit.

I don't think anything will happen, if it even does... talking potential litigation here.

Will another firm or even the current one take a case pro bono after all that has gone on and the balanced judgement (IMV) of J Francis today?

It will take a long while for something like that to happen. But I fail to see why it would.

Dorothea you are right, Dr Hirano only ever gave statements about 10% chance of coming off a ventilator - in another related condition, not Charlie's.

C&C's statement about Charlie being able to ride a bike or be a normal healthy boy came entirely from them and their love and desperation. None of the other children you ever saw having the treatment were 'normal and healthy'.

One thing I take away from these events is a great respect for him and the way he has handled the whole affair.

I agree. The judge has been very measured in his approach, IMO.
My deepest sympathy goes to that poor little baby, and of course his parents.

The merchandising just seemed all wrong to me, almost a competition as to who had the most bracelets / key rings and whatever else.

The Telegraph's chosen headline:

"'We had a chance and we were not allowed': Charlie Gard's parents blame hospital as they end legal fight to save baby's life"

Of everything the might have said about what happened today. To be so provocative is a disgrace.