Charlie Gard 18

[cjt110]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

@JoshuaRozenberg
2m
Gard: Court now adjourned to await arrival of the family’s specialist doctor.

redglitter I didn't make it clear in my post, but it is unfair on Charlie if that were to happen. It's clearly about the parents wishes and would see him being alive for his birthday.

"how does this solve the problem of the ventilator not fitting through their door"

Maybe they're gonna put a marquee up in their garden?

Ta!

-None of CA have offered or asked how to help with fund raising even though this child might be early enough on in the disease to benefit! Which I would have thought would have been a fitting legacy for Charlie

Correction: CA admin has turned off commenting on that post, so nobody in CA CAN ask how or where to donate/help with fundraising

I don't think patience and compassion is working very well for Charlie. I think to act decisively and quickly would be preferable.

I still think they may push for hospice and then bring him home after a week there

They wouldn't be allowed to. I'm sure any order that is made will cover this situation.

Oh gosh yes, I wish he had made the order on Monday.

...and I'm still concerned about a midnight flit too

Got to say, I can't help but think that's why they pulled out on Monday. So they wouldn't go against any up to date order, if they did.

Tinsel, I saw that too, the baby in the US who has just been diagnosed. Not even a whisper of help from anyone.

I think the order will be very clear on the timeline of events.

From the tweets, I'm not clear if the doctor is just giving evidence, or if s/he is offering to be there on stand-by for a week. I guess the GOSH nurses aren't an issue, many thanks to them! But is the hospice going to be okay with all these extra personnel and equipment for a week that is a very different matter to the 6-7 hours then extubation they initially agreed to...........

I fear more delays and stretched out again and again until his birthday. Unless the judge says enough is enough..............As posters on the deleted thread said, setting up an ITU elsewhere is not a trivial task, and some retired doctor however well meaning, how long retired, are they up to current standards, do they really think they can do the whole thing (with some nurses) for a week...............Hell of a shift!

Thanks Ceto for response on other thread re CGF. quelle surprise indeed!

Fair you need to get behind me and Lapin

I can live with that, cjt

I'll say it again, as I think it was in the deleted thread - I have no idea why JF didn't include a timeline on Monday. He will have known there was no chance in c&c and Gosh agreeing it amongst themselves!

I had a bit of a lurk on various threads where various US posters were giving their views on all this and it was clear to me:

1. Many have absolutely no understanding of basic science. They were asking things like whether vaccination had caused his problems. That is quite remarkably ignorant when you think about it. They obviously don't understand the different between a virus/antibody issue and a genetic issue, so it means they don't properly understand germ theory, what DNA is, etc. Quite bizarre in this day and age. I couldn't have been more surprised if one of them had come on and started asking about the four humours.
2. To them, the term 'socialised medicine' appears to mean 'you can't decide what happens in your life'. They genuinely don't understand that we get significant control over our access to healthcare compared to, say, someone heavily financially controlled by a health insurance company, where the hurdles to good quality care can seem almost insurmountable regardless of your insurance plan. Certainly the plug would have been pulled on Charlie a very long time ago in the US. Their healthcare is just as socialised except it's done by a large corporate, inefficiently, with a profit margin built in. There's a lot more 'computer says no' and many fewer examples of good co-ordination amongst professionals and evidence-based practice for them. Which is why their mortality rates are worse, especially for children. Yet they genuinely think theirs is a more successful system.
3. It sounds like Andrew Wakeford all over again. Doctor appears from nowhere going rogue to make a name for himself, making a big splash in the press. Yet the posters seem to think it is fine for someone to do this 'if the parents want'. In fact anything apparently goes, in the name of parental rights. Presumably if someone bowled up and suggested stubbing out cigarettes on the child or bee sting therapy, this is also fine 'if the parents want'? I think not.
4. Many seem to think Charlie should have been made to have the treatment anyway 'so it's not a waste of a life'. They can't understand what a proper medical trial is and the fact that hoping for a one-off 'Lorenzo's Oil' type miracle isn't useful here, and that we need to listen to those actually fully engaged in the trials to understand why not.
5. You can't help feeling for the parents but this is a massively dysfunctional grief reaction on their part, and the press should not have fed the beast. Sticking it all over the world's media has made these people more miserable and more haggard than ever before. I would also like to know who the PR company is that's clearly benefiting from organising the media circus. Qui bono and all that.
6. I hope they donate the rest of the donated money after costs to GOSH to offset the costs of the care and also (presumably) their lengthy stay in the patient family hotel next door. They have done immeasurable damage to the equilibrium of that organisation and need to make amends.

Poor Charlie..just catching up, cannot believe *more delays...it is interminable.

Thank you cjt and gobbolino.

I have not posted before but have followed each thread and have greatly appreciated the wealth of knowledge shared.

Hospice doctors being there is all well and good for palliative care but they are wanting ITU care so therefore they will surely be limited in what they can do?

Even if Charlie can be moved, it's going to take some days to organise, isn't it?

They've presumably got a plan in place for a move to the hospice.

Would such a case normally get all these delays and kid glove treatment? How much of this is due to the media involvement etc?

I understand why C&C do not want Charlie to pass away in GOSH. It's not their home. It's a place where they have experienced a lot of emotional trauma.

However it sort of IS Charlie's home isn't it? He's been there for pretty much all of his short life.

Would it not be easier for the family to make the PICU side room he appears to be in (judging by the pictures) more home like, bring in the cot they want him to die in etc.

Do hospices actually have resident doctors ?
I'm saying resident as opposed to doctors on call.

I hope Armstrong is going to communicate his apology directly to Katie Gollop, since she isn't in court today to hear it. She's taken a whole heap of shit just for doing her job.

I've been involved in care proceedings where a fact finding hearing was scheduled for 6 weeks. Each Leading Counsel had a junior. They cover one another if one cannot attend. Other listings will be pushed back if it is deemed necessary to continue outside scheduling.

I can understand them feeling that way about GOSH, but a hospice might be a better option? Easier for them.