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.

Sost I stand by what you've said. Thank you.

The fourth and graver problem is how to deal with such problems in the future given social media and its ability to allow people to voice their opinions without knowing the facts (that includes MN, FB, Donald Trump et al).

It really could have huge implications for both medicine and law.

Sost

Has anyone seen this tweet from CGF? Where are these figures from? Have I missed something huge?

"90-100% of therapy crossing the blood-brain barrier, 11-56% of sig muscle improvement, "at least 10%" of major recovery."

I think if this case now has such wide ranging implications that it is inevitable people are going to have opinions about it and want somewhere to discuss them. It isn't only about one family anymore, the way this has played out there are far reaching consequences elsewhere such as the public denigration of a world class hospital and the professionals who work there. As well as politicians like Mike Pence using it to frighten people about and destroy socialised healthcare. How many donations will GOSH lose? How many parents will be scared to seek healthcare for their children because they've been fed a pack of lies about hospitals kidnapping and murdering their children? How many more babies and children will die in the USA because they can't afford to see a doctor? This stuff matters.

10 threads about a maybe dying disabled child. TBH i find it weird.

Yup.
10 threads about a high profile sick child..
...And how the US right wing have hijacked a british family's tragedy to discredit the NHS for it's own anti nationalise health agenda...
...And how religious fundamentalist pro-lifers hijack and manipulate the vulnerable….
….And about trial by social media…..
….And the impact on our health providers of the point above…..
….And about the media's missinterpretation of the law and of science…
…And about the public's inability to recognise the above…

Thanks Maryz.
I thought she'd got that blood brain barrier % from the 'new evidence' for a minute there. Spreading false hope then!

Thanks for the new thread and the updates/discussions.

good post millie

reading news reports and the newspaprs no wonder people think this is a miracl cure

theres no facts just a us doctor will treat him and says he can help! that missing an awful lot of information

hardly anything from the court reports or the fact that four spcialists have already seen him an concurred theres no chance of a healthy life

arguing with people myself they seem to be making things up and if connie says gosh are liars it must be true

If the journalists ar going to report they should do it accuratly or not at all

"90-100% of therapy crossing the blood-brain barrier, 11-56% of sig muscle improvement, "at least 10%" of major recovery."

Somebody has queried the figures asking for the research to back them up.

She says, "They will appear in the transcript".

An aside for those of you who reported the NHS employee who was advocating a 'hammer in the face' for a QC.
I just saw her comment on the CA USA page and noticed that her profile no longer shows her employer. So either her work had a word telling her to remove it or she's taken it off herself (tipped off perhaps).

TinselTwins I agree wholeheartedly. It is not weird to have so many threads discussing how we as a society deal with the rights of a very ill child whose parents are in conflict with medical opinion and whose rights as a child are being hijacked by all manner of people with their own agenda. Far from weird, surely we should be discussing these issues in a rational way, which has, by and large been the tone of these threads.

Some of you may remember this article in the Independent:

www.independent.co.uk/Voices/charlie-gard-gosh-great-ormond-street-hospital-life-support-pope-donald-trump-a7827276.html

The same paediatrician has posted this on facebook today (hope the link works):

www.facebook.com/DrRaviJ/posts/1916307315298646

I saw that reference to the transcript Ellie which is why I asked the question here. I thought I'd missed something. So is she suggesting when the doctor comes over for the meeting on Monday that's the figure he is going to claim?

Curiouser and curiouser...

It is not weird to have so many threads discussing how we as a society deal with the rights of a very ill child whose parents are in conflict with medical opinion

Exactly!
Because the alternative which is being promoted (with CG as their pawn) is that the rich do what the hell they want with/to their kids, and the poor/un-insta-popular just die!

Gin They weren't the figures he was claiming the other day

Great post there by Dr R nocool.

I do wonder about the long term ramifications of all of this.

I know Ellie I was following JRs tweets in real time and didn't see anything like that suggested.

It's cruel to the family to be spouting made up shit and if that's what she's doing, shame on her!

Monday and Tuesday will be very interesting.

Just having a poke about on twitter. This Barnstormer fellow seems to know exactly what's going on.