Charlie Gard 9

[muckypup73]

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"

We've yet to hear from the Italian doctor. I think it was mentioned that he will be part of the meeting, can someone correct me if I'm wrong there. I'm assuming he is one of the 'seven' we've read about. (I thought it was originally said to be 'five doctors' but not everyone who was signatory is a medical doctor).

and yet another x-post from me, sorry Bore.

And again a self appointed "head girl" feels the need to chip in. Nina if you're not interested then simply click on. Me, I'll keep reading the wealth of really interesting contributions from those with both professional and personal insight who are generously giving to a very interesting discussion. Like most my interest is in expanding my knowledge and understanding of a complex and unique situation.

If Charlie is treated there then won't they have to get permission from the UK to use the medication ?
That might be possibly more difficult than getting it in the US where it seems experimental medication is more commonly used.

Perhaps the American's using Charlie's case to denigrate the NHS should look at this article: www.bbc.co.uk/news/health-40608253

In a study if the healthcare systems in 11 developed countries, the UK came top with the US last. The NHS is not without its faults, but at least no one is turned away for not being able to afford treatment.

Nina do you seriously think that people are going to stop discussing the scientific, ethical and legal issues around this case? On YOUR say so?

Does anyone know why Chris Gard is not being allowed to attend this multi-disciplinary meeting?

I do. My dad is strongly behind the family and so are all but one of his colleagues.

Dumbfounded at the American saying socialised healthcare/NHS is bad because it is run like a business. Unlike American hospitals which literally are businesses?!

I cant see how you can force the UK doctors to give a treatment they believe is futile and prolonging charlies suffering. I agree with wannabe in that this should happen in america where his condition and treatment can be monitored by the person carrying out the trial.
The problem arises when after 3 months if there is no or little improvement (and I believe he has only had 1 in 9 who have actually come off a ventilator) what happens to charlie then. Will america take on the full cost of his care? . I cant see any british hospital being willing to take his care back on.

And, if the US doctor is not licensed to administer this treatment over here and UK doctors refuse to do so on his behalf (can they do that?), then what happens? Assuming Charlie is too sick to be transferred to the US?

if this is coz i said morning i was jut being polite

if this is the same doctor that said originally charlie was worse than he was told before he said he could help why has he now changed his mind based on nothing?

Jog on Nina. Many of the posters on these threads, including me, have personal reasons and experiences that mean that we feel strongly about this case and it's outcome. These threads have been a haven of reason and kind, moderate discussion.

octopus as far as I can see, the legal team concentrated on pushing for Connie to attend on the basis of her being the one who'd researched the condition. But I think there is also a tacit acknowledgement that she is less volatile and would be calmer in such a meeting. There didn't seem to be an insistence on both parents attending as long as Connie could.

Thanks Dorothea for explaining about the doc's visit.

Yes Mary it is the book by her husband but she finishes it after his death. Here is a review www.theguardian.com/books/2016/jan/31/when-breath-becomes-air-paul-kalanithi-review

I would also recommend a book I'm reading just now called Being Mortal by Atul Gawande, and Late Fragments by Kate Gross.

I've just read this on the GMC Website:

International Medical Graduate

"If a doctor has an acceptable primary medical qualification from a country outside of the UK or the EEA, they need to prove that they have enough clinical experience to practise medicine in the UK."

"They can do this in one of four ways:

1. A pass in the PLAB test
2. Sponsorship by a GMC approved sponsor
3. An acceptable post graduate qualification
4. Eligibility for entry onto the Specialist or GP register"

So I do think the American would be allowed to give the treatment. However, didn't they say the treatment was just something they added to Charlie's feeds which the nurses/parents will be making up anyway I assume, and if that is the case the American doctor wouldn't actually be doing anything physically himself to administer the treatment.

It's all so complicated.

I imagine C&C will want Charlie moved to America anyway as they've lost all faith and trust in GOSH. They will probably accuse the doctors/nurses of purposefully making up the medication wrong as part of the conspiracy to kill Charlie

That's my other worry IF (and its a big if) they do get permission then contrary to the belief of CA the process to get him as far as treatment is going to be long and drawn out too getting the right permissions and people in the right places

He believes they should try the treatment and that the Judges delay's in allowing that could kill Charlie. He was quite nasty when I took Gosh's viewpoint so i wont argue any further.

Thread 9? This is getting obsessive and the "Hi guys..." greeting really grated. Some people might like to take a moment to think about what you are actually doing here. It feels intrusive, now.

"Intrusive"
Good choice of words in this discussion Nina

A lot of posters on here have used GOSH, some not for the last time, one even at the same time as C,C&C. For those of us who have been lucky enough to have not used GOSH, we (well I) feel very aware that it is the last port of call should our children get so sick that they can't be treated locally

So back to intrusive

This is why posters are concerned about the impact of this case (and CA) on people using GOSH, this whole thing is intruding into their bubbles of grief and hope and all the other thoughts/emotions which should be focused on their own children right now

Posters are concerned about how the unit is having an intrusion of press workers, an braying self serving american pastors, and the effect this is having on everyone in the unit right now including C&C who should be loving and grieving instead of fighting and being riled up into missfired anger

We are ANGRY that the US right wing is intruding into this familys tragedy for their own benefit

We are WORRIED that the precident that this case sets means that mutidiciplinary care teams will in the future be intruded into by hospital legal teams and PR teams instead of just doctors, scientiests, nurses, social workers etc, and the impact this'll have on health decisions in the future.

Intrusive hurtful comments about families who haven't "faught" end of life care

The way CGs case has been "used" by others, the CA members who are treating this like an episode of love island, the fanatics, the politicians etc actually affects us all as it is an attack on the NHS and GOSH and that matters to everyone!

Interesting that the media are reporting Armstrong's assertion that CY was as qualified and knowledgeable in this field as the experts, but not that the judge responded clearly and firmly that no, she was not, and that she could not possibly be objective, and got pretty firm with Armstrong/CY about accepting limits around her participation when they pushed it too far.

The dice is loaded in every direction. If CY's involvement means the experts/chair have to feed back they were unable to have a full and frank meeting because of her, or if she has to be asked to leave during the meeting then what happens? It's already clear parents will use not being allowed to be present/conversation happening that they cannot police as a reason for further legal challenge.

If the judgement is that no new evidence can be admitted because the family refused scans then ooh look, here's a new legal challenge/judicial review/bid for new evidence, because the family can stall another week or two because they now will allow scans.

I don't see how this can be done in a way that the family will ever accept. It reminds me of the Issendai articles, that it isn't about that they have not yet had enough information that they are convinced, you can go on explaining forever. It's fundamentally about a refusal to accept that information they don't want or like can be valid.

TinselTwins, well said.

11122aa can I just check what your dad does for a living?