Charlie Gard 13

[muckypup73]

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):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

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

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

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

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

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

"Sad day when one journalist live tweeting a case (JR) appears to be the only observer capable of constructing an accurate, objective, correctly spelt, properly time stamped account of a news story."

Yy!!

It's hard to know without all the facts but I think Gosh's QC could have asked the judge for a short adjournment so C&C could be told about the MRI in private. That's based on many ifs though...if they hadn't been told, if they hadn't been contacted, if Gollop didn't know they didn't know...and more. Definitely not going to help Gosh's cause delivering bad news like that though, even if there was a genuine reason for it - obviously it would get twisted by CA and the media.

I suspect that the information about the scan was given at the hearing this morning; that Ian Woods remembered about it later (or maybe wasn't allowed to report it till the parents had had more time to digest it?); and that CA have misinterpreted his tweet to mean that there was a further hearing this afternoon.

for how long?
C&C could hold up for DAYS saying the court said the could have time to digest the report and want a 5th/6th/7th opinion

Longer than they got today, Judge Francis can simply say it's imperative that they're ready by monday and refuse to admit evidence following Monday (including multiple opinions). If they chose not to take the chance to go through it and have it explained, that's on them. I just don't think the way it was done was right.

Even if there is a child with the same condition receiving the treatment, it's not a big deal, is it? GOSH were prepared to apply for permission to use it for Charlie and would presumably have gone ahead if he had not become so ill. This child may well be at an earlier stage in terms of the progression of the condition.

Sky gave it the breaking news treatment on their app, sending a push notification to announce it.

We really don't know how the news about the scan was given to C&C, so we can hardly judge whether it was done properly. For all we know it was explained and they rejected it or didn't take it in, or they refused to listen.

I think that whatever the circumstances around the parents knowing/not knowing the scan results earlier today I think KG has done totally the right thing by talking about the results in these terms. The court, GOSH AND the media have, understandably, tiptoed around them, been sensitive and accomodating as far as possible.
But it seems clear now is that this little boys life support WILL be withdrawn at some point in the very near future. And perhaps a dose of harsh reality may be the kickstart that this young couple need to start somehow accepting that. If their levels of distress and hostility continue, there is probably a very real possibility that they will be prevented from being with Charlie at the end.

Longer than they got today and how long did they have today?
All we know is that they say they hadn't read it
That's not the same as not having had the opportunity to read it

What if they still haven't read it on monday, or tuesday

Them not reading it does not necessarily translate as them not being told about it or given an opportunity to ask questions about it in private!

Sad day when one journalist live tweeting a case (JR) appears to be the only observer capable of constructing an accurate, objective, correctly spelt, properly time stamped account of a news story.

JR is actually a lawyer, isn't he. He's reporting on the law, and knows which parts of the proceedings are significant to follow the legal process and what is waffle and can be omitted.

"we weren't supposed to read it like that" is very ambiguous.

There are so many twists and turns to this story that it's starting to get really hard to be able to think through it all.

This is just brutal... Someone has to put their foot down for Charlie's sake
Poor Charlie.
His parents are so mired in their own false hopes/paranoia that they are seemingly incapable of making rational decisions.

Of course the members of CA are saying the predictable
, that Charlie's muscle wastage is due to him being kept at GOSH
Did they really think that there was any other realistic option?
It's not like Charlie would have been doing physio for goodness sakes.

The Pistonheads guy said that he'd expect Charlie's MRI to show significant ''holes''...just ghastly.

Let the poor baby slip away with dignity , Please.

Interesting that the BBC focus on the protesters and don't really mention the scan business or the parents' outbursts at all. They are prolly part of the GOSH conspiracy though.

www.bbc.co.uk/news/amp/40685461

I hope the judge is firm and sticks to next week's schedule with a final decision made quickly.

I also hope that if it goes in GOSH favour they act quickly. It was them trying to show compassion to the parents and give them extra time that started this circus

I'm upset with all the negativity I'm finding too
This is all very MLM mentality isn't it?
NO NEGATIVITY WILL BE TOLERATED (including medical test results that aren't "positive" )
Charlie WILL ride that bike because we want it enough

Not posting the link from the Fail here, but the comments under the latest story on the DM FB page are overwhelmingly negative toward the parents -

"I get a sense of secondary gain. Just because they are parents and show the public and media they care doesn't actually prove their motive. Why let it go this far, disrespecting doctors who are trying their best and are now likely to be going through unneccesary stress because these two constantly putting their practice down. I am irriated by them now"

"I feel like they are trying to use publicity and gain so called 'fame' from their son's condition since they already know there is absolutely no hope and keep dragging it on causing them suffering and the unfortunate baby. Maybe he wasn't destined to remain and live in this world full of evil? They need to accept this fact however heartbreaking it may be...I do hope God eases their sufferings xx"

"@Claire you are completely right. There have been millions if not more of parents who had to make this hard decision and they never insulted doctors, authorities and displayed any contempt towards our institutions. These two are just opportunists."

And it goes on.

Just been catching up with all news from today.
Some of the reporting is horrendous! Some places they call Dr H a 'Neurosurgeon' which he is not- he is a neurologist. (can't they even get basics right?)
Then they 'yesterday' for the hearing today.
They are not at all bothered about the facts! They just want headlines which will give them lost clicks. 'EEG's called scans. These news reports make a 'sad reading' for me.

As for CY saying 'I haven't read the scan report yet' - Why wouldn't she read a scan report handed to her when her lawyer has said she 'knows all the technical terms', so presumably she understands what's written.
Knows there is a directions hearing and knows this is very important bit of evidence as irreversible/structural Brain Damage vs no/ reversible Brain Damage is what's going to make the decision. The way the GOSH's barrister mentioned it, she presumed the patents have read it (so they probably had Sufficient time)- the only reason I can think of why they wouldn't read it then was they were so scared it will prove GOSH's point- so scared that they tried to resist having these scans & EEG's etc- Makes me feel
So sad for them - they are so scared yet they to out this bold face on and fight erred on by close family & CA that it's going to be so hard for them when their baby dies or doesn't make any recovery on the experimental drug and remains on life support without ever regaining any mental faculties & they will finally realise what they have been denying.
As of their lawyers claim there is another child in UK same condition, same experimental therapy on the NHS- how is it going to help them when they have so far portrayed it saying 'Cahrlie is in this state because his parents relied on NHS'- there are only 2 hospitals in UK I think where they have Mito specialist- one is GOSH & the other one in North who also gave second opinion & agreed with GOSH- so maybe they have already assessed CG & said no

I'm a bit shocked reading the bbc link about the protestors, I hadn't realised that the judges comment she were based on complaints from parents of patients. My DS had heart surgery as a newborn and I can't even imaging being confronted with protestors shouting about his hospital murdering babies. How fucked up in the head must you be to do that? What about all the other babies receiving treatment? I'm feeling quite angry about that.

I wonder how the parents can come back, how they could change their minds when theres a whole "army" fighting for him to live whatever.
Whenever ive had to deal with tricky outcomes at work i always try to make sure theres an opening for the other people to take, a way to back down without losing face. It works. But theres no way even if they now do change their position.

Is it possible that the MRI report is the "medical notes" which the parents were claiming they didn't have earlier in the day?

Wondering if the MRI was done, say, yesterday and the parents were told verbally of the results but were demanding the written version and were refused because it hadn't been fully prepared and reviewed yet (given that GOSH will no doubt be triple checking everything)

I'd also have interpreted it "not supposed to read it like that" as them knowing but not having seen the report.

I suspect most of CA would swing into line behind anything the parents said.

Here is a very good blog post with an extensive list of resources, articles and writings on the CG case, collated by ethicists by Dominic Wilkinson and Julian Savulescu.

I haven't read all of these but I'm sure they will be interesting and enlightening. I know of Savulescu through his work with Peter Singer.

blog.practicalethics.ox.ac.uk/2017/07/the-ethics-of-treatment-for-charlie-gard-resources-for-studentsmedia/

Gawd. Formatting fail in that last post. Sorry.

All this just beggars belief I really can't understand how the legal system is tiptoeing around this situation. Somebody needs to be decisive and take responsibility for making a decision.

As much as I feel sorry for the parents, I feel that this is all about them and they need someone to guide them through their grief instead of this never ending court case. I think that perhaps younger people don't have the resilience of past generations and appear to believe they can control all situations and outcomes.