Issues raised by the CG case 11

[Venusflytwat]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

ShellyBoobs, i have just had a scroll, will have a proper look tomorow.

TinselTwins, I saw that,........................ surely they would see his whole body move as he cries,does that makes sense?

i saw that man oak

haertbreaking-why wont they lets us die with som dignity

I found this a helpful read:
www.statnews.com/2017/07/17/charlie-gard-treatment/

What shocked me on a link to that man with MNDs case was that one brit per fortnight travels to Dignitas.

I didn't realise it was so many

And to have to chose between dying alone and incriminating your family!

Also you'ld probably lose any life insurance that would help your family when you pass if you don't do it as part of your own doctors care

Also this, unusually well written for Wiki (as of right now anyway) and explains why people holding up examples of sufferers of other related strains of mitochondrial depletion syndromes just isn't the same:

https://en.m.wikipedia.org/wiki/MitochondrialDNAAdepletionsyndrome

thank venus

the boy can move his fingrs an sit up for awhile

what sort of life is that and thats not even the same strain!

This is on CA:

'' Surely the fact he's still here, growing, looking healthy is a sign he wants to live? ''

Are these women trying to convince themselves, perhaps?

Many years ago, 1980 I think. there was a little boy who did transfix the media around the world..people listened avidly to radio news on the hour, day after day.

Alfredo Rampi.

He fell down a very deep narrow tilting artesian well in rural Italy.
The efforts to save him were herculean.

I was a teenager at the time, but still remember that poor baby.

Bet some of us will remember the images of Charlie's inert form lying on that bed in years to come.

But thoughts go out to the hundreds of parents who somehow cope with their sick children [any age ]silently, privately, away from the fickle glare of public opinion.

Venus - thanks that's really interesting.

The statnews link is talking about exactly the same thing as one of the posts in the piston heads link I posted.

The scientist on there pointed out a few days back that the other cases being thrown about in the media are not the same disease that Charlie is suffering from, but yet people are blindly believing that the US doctor will be able to help him with the same treatment.

The piston heads person has described the difference in the diseases in a way that even I understood, using a bridge painting analogy, which makes the US doctor's angle seem even more bizarre and snake-oil-like than it did before,

Pistonheads article was pretty doomladen.

..He admitted he wasn't a medic, but a Phd..he seems to understand cell function pretty well..and his attempts via analogy to make it understandable to all were commendable, if woolly [to me] in parts.
I

This comment chain from Reddit is a really good summary of what's actually happening with Charlie's genetics.

The Mail has this:

It emerged yesterday that the judge held an emergency directions hearing over the weekend, believed to be from his home.
Although the case is being held in open court, the media was given no information about the weekend hearing or why it could not wait until the working week. The judge was on leave yesterday and unavailable for comment.

I'm wondering if he ordered that scans and/or eeg be performed. Any legal MNers around?

I looked at Pistonheads bloke comments a few days ago. He's certainly no clinician. Enjoys mansplaining though.

I imagine it's either to give Hirano permission for any and all scans that are 100% required for his analysis (such as MRI), or, god forbid, Charlie's taken a massive turn for the worst.

Mansplaining...brilliant term..he really did enjoy it, electron transfer chain, I think?...been a long time since I did biology.

Do we know it's a man? For some reason, I'd assumed it was a woman (if we're talking about Wiccan of Darkness).

Morning all any updates? Anyone with ideas about why judge called weekend directions meeting? Have I missed anything? (Smile)

The pistonheads article was debunked several threads ago.

TinselTwins one person per fortnight going to Dignitas is only about 25 a year. From a population of 65+ million that doesn't seem a lot to me.

We cannot change our present law on euthanasia because we can't be trusted not to abuse it especially concerning vunerable people. As you say argymargy 65 a year isn't many.

Sorry 25

I have tweeted Joshua rozenberg to ask if he knows anything about the emergency meeting

Seems no one was told about meeting. Bet it was about getting scans.

Do we know it's a man? For some reason, I'd assumed it was a woman (if we're talking about Wiccan of Darkness).

Yes, it's a woman, as far as I'm aware.

"Mansplaining", indeed.

I'd assumed Wiccan was a man too. A quick search to confirm my prejudices found this unrelated post by Wiccan which strongly implies maleness I think.

Mansplaining seems an appropriate description for the combination of superficial / partial knowledge and a patronising tone of sharing great expertise.

If there was an emergency directions meeting over the weekend then it does seem highly probable that the judge was asked to order scans, which means that the parents were still refusing them despite the US doctor flying over. That seems extraordinarily obstructive and I wonder if the outcome of the directions meeting is why the mum's fb was closed down (a pp said it was closed on Sunday night). Masses of conjecture going on there though, but it's hard to think of another reason for an emergency meeting - it's almost certain to relate to a disagreement over some aspect of the US doctor's visit.