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Issues raised by the CG case 11

999 replies

Venusflytwat · 17/07/2017 18:30

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

OP posts:
Thread gallery
8
BeyondDrinksAndKnowsThings · 18/07/2017 13:08

It is widespread. Not intentionally I don't think, but as I said a few threads back, people have interpreted the news coverage (everywhere, no one place is worse at it than anywhere else) as "little baby being denied complete cure by NHS, cause they are just being nasty"

MontyPythonsFlyingFuck · 18/07/2017 13:09

I believe the next court hearing will be Friday. The transcript of the meeting will be sent to the judge asap, presumably, so he can study it.

Leontine · 18/07/2017 13:10

Oh so it's just the meeting today?

0nline · 18/07/2017 13:10

Sheer pig ignorance and it makes me livid that there are adults stupid enough to casually compare this to the Third Reich

It's not CA specific. It's pretty much rampant on SM.

Zero mph-Godwin at the speed of light. "They are literally fascist/Hitler" has become a way to say "I disagree".

Maybe it's partly because we are so far from the war now. My grandfather fought in it, my mother born in it, I grew up hearing about it. It was real and its shadow was long.

But shadows grow lighter the longer they have to stretch. And perhaps it has stopped having enough weight as an event for a lot people these days, who are far removed from it. So it has been reduced to a sort of "top that motherfucker !" retort, put in place to stymie discussion, examining of arguments and debate.

I feel like things are going in reverse. It used to be that when we were children that was the time to divvy the world up into goodies (always right) and baddies (always wrong). It made things easier for a young mind. Don't worry about the point to hand. Just check the stripe of the team and decide who is right, or wrong on that basis. But we were AFAIR expected to expand upon that rather blunt tool once we got older.

Maybe we didn't do enough to sharpen our tool, and what we see now are the sprouting seeds that were sown by our own apathy ?

Or maybe because the internet can bring everything to our sofa we don't bother so much with placing what we see on a small screen into real scale with the real world ?

I'd read about WWII. My grandparents talked about it lots. My parents too, not least because my father was in the military and we had to watch a never ending WWII history programme on our telly every Sunday without fail. But I didn't really comprehend the scale and human cost till I stood in a cemetery near the river Khwae and from nowhere all these really shocked tears came out of me.

We can't drag people to the physical remains of what Nazism meant and what it cost so many nations. But without that contact with scale, I think only a shrinking proportion of the population will really understand why we can't afford it to be reduced to an ad hom in a SM row that you want to score cheap points in.

I dunno. I worry about DS. He's coming up for 17 and in these parts fascists and lovers of Il Duce are real and in some cases actually related to him. So he has some grounded sense of what it means in real terms. But realistically he spends more time being exposed to Anglophone SM than Italian real world when it comes to the bandying around of "literally Hitler !". So maybe I should start thinking about somewhere I can take him, so he can absorb the extent and meaning of what the words he hears actually mean one human level.

(Apologies, was only going to write a short comment, but went massively off at a tangent)

taratill · 18/07/2017 13:15

My son is autistic, I dread to think what would have happened to him if he had been born in the wrong place at the wrong time, read Neurotribes, it's shocking what happened to the disabled under Nazi Germany.

That's why in THIS debate it is particularly unacceptable.

BeyondDrinksAndKnowsThings · 18/07/2017 13:16

Great post 0nline!

Trampire · 18/07/2017 13:21

Yes, great post Online.

My father was in the military too and I studied Modern History. I think you're right. So many people now seem to use 'Hilter' as an off the cuff insult. I've some younger people (mid 20's?) say they don't know who Hilter was. That's just such a failure to educate everyone.

muckypup73 · 18/07/2017 13:23

I cannot belive the parents have to wait another 7 days for the case to be heard,however I think they will have a good indicator after today as to which way it may go, because the usa doc has said theres no point doing the treatment, then surely they would be told this today?

redshoeblueshoe · 18/07/2017 13:24

great post Online, it did make me feel old though, as in my case my DF fought in WW2 and my GF fought in WW1.

muckypup73 · 18/07/2017 13:24

Great post Online.

TheWeeWitch · 18/07/2017 13:30

I've been missing for a few hours and return to find that we've gone FULL GODWIN!

WannaBe · 18/07/2017 13:34

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0nline · 18/07/2017 13:35

it did make me feel old though

Wildly off topic, but I have a strategy for that.

I've lost my glasses. They are somewhere in the house. They are staying lost. Cos for weeks I have been denuded of that "wtf is my mother doing in my house!" shock, every time I catch a glimpse of myself in the mirror. I see me again. Natural soft focus. 'Tis fab and I haven't felt old (desipite reality trying to poke its way in) since. Smile

SomeDyke · 18/07/2017 13:35

"And there has to be a change in the law to prevent even one future case like this getting to court again."
Except who else is going to ensure the rights of the patient when there is disagreement? At least a family court judge has to apply the law in this case, and also are being seen to be applying the law. I think he stated in an earlier judgement that the process could be improved, and he has himself, as I understand it, tried to do that by the current arrangements and the private clinicians meeting. But I would not want a 'change in the law' that took away Charlies right to have a law which protects his rights, and the usual independent judical process in place to ensure that that law is respected. Because I don't think that you can legislate to ensure that such cases never come to court again.

I'm quite reassured that this case and the legal aspects are taking place in public view. We have come to realise the differences between the position in the US and here. People who all have a childs best interests at heart sometimes disagree, whether that is one parent with another, doctors amongst themselves, doctors and parents, and so on. Doctors who don't want to be forced to continue treatment they feel is unethical deserve the protection of the law. Parents who feel a patients rights are not being respected deserve the protection of the law. And finally and most importantly, patients like Charlie deserve that the law is there to protect their interests.

I regret that this has become so public, but the issues (if not the exact medical details) are of concern to all of us. I'm actually reassured by what our law actually is, and by the fact that our legal system seems able to apply it, despite the social media reaction and press intrusion. A better procedure, yes, but I think the law is correct.

goodbyestranger · 18/07/2017 13:39

WannaBe it's hard to accuse GOSH of acting badly in not turning off the life support when the parents put out a video literally begging them to have a few days extra time for their family to travel to say goodbye.

annandale · 18/07/2017 13:42

I don't want a media blackout because it won't include FB. A range of information sources is the safest.

Sostenueto · 18/07/2017 13:43

I think the doctor had to come over after last weeks hearing. He said this and that % and he said he couldn't tell it would work unless he saw baby. He was put in the corner properly so IMO by the judge. It implied put your money where your mouth us touch so doctor had no choice but to come over. After all it was his baby so prove it with real evidence.

DarthMaiden · 18/07/2017 13:46

I agree Online.

My GF fought in Burma during WWII.

He suffered terribly with Malaria (something that impacted his health for the rest of his life).

I understand many people felt unable to talk to their families about their experiences, but my maternal GF and GM were very open - they felt it was important to explain the grim realities of war (in an age appropriate way).

I won't forget my GF telling me how when the war ended and VJ Day way declared how his unit was pulled together and told they would have to walk 2,000 miles to get to the nearest port for repatriation. How many men died, having survived the war itself on that arduous yomp from dysentery and exhaustion. Other experiences of close quarter fighting are I think too horrific to share here.

The same for my GM who worked in in the WAAF. She was one of the women in flight command in Plymouth with the headsets on talking to the pilots (as you see in many movies of that period). She told me she would never forget the screams of young pilots as they were shot down, unable to bail, many in burning cockpits. Many calling for her to tell their families they loved them.

It's all so "real" to me - because they told me themselves - often with tears freely falling.

I have told my DS these things - especially as he has been studying this period at school. He's seen pictures of my grandparents in uniform. However it's inevitable that it's more detached for him. They died before he was born. Yes - he appreciates what they did and that it's part of our family history but it's not the same at all as hearing it from those who were there.

For people with no exposure at all to such events and experiences I think it's just a "word" to use in proving a point when talking about "nazi's" etc.

Sorry - got a bit carried away there - sorry to derail.....Sad

Sostenueto · 18/07/2017 13:46

And we need threads like this to be Informed of important issues like this case. We all know we cannot rely on the media for the real truth. So keep on posting folks and learn from each other and stop looking at CA posts cos it upsets everyone and has no real point now.

WannaBe · 18/07/2017 13:47

goodbyestranger I don't disagree on that score, but what I do disagree with is the fact that it was GOSH who then brought this case back to court.

It certainly won't be for fear of a lawsuit given that GOSH will have a pretty robust legal team, and they won't have been scared by the rantings of a few morons on the internet. So if they brought the case to court themselves they must also have some indication that there is in fact new evidence or that a treatment might have some benefit.

And if it is concluded in this instance that Charlie can have the treatment then it is going to set a huge precedent in the future for any other sick children who are in the same/similar position and who should be allowed to peacefully slip away rather than become the centre of some awful legal battle.

NellieBuff · 18/07/2017 13:50

Online - that made me laugh out loud.

Slightly off topic but illustrates the effect this case is having on the public at large.

Himself was called into work late last night (they are short staffed) and off he went thinking - oh who knows what he thinking but when he arrived he was somewhat surprised that he wasn't actually required for his usual skills (I should point out have to keep this vague for obvious confidentiality reasons).

Young person (not baby) in a bad accident so ventilated, drips everywhere and looked quite bruised and bloodied but scheduled for routine surgery in morning to put everything where it was supposed to be.

Himself was called in to help calm down very anxious parents who said "please don't keep alive like baby Charlie - we don't want suffering like that". Obviously himself calmed them down pointing out that when patched together would be sent home with no return policy given by the hospital. Should point out * expected to make full recovery with some very nice scars to impress folk with.

After this ramble my point is that the parent's first fear was that their case resemble CG in some aspect. Of course it didn't in any way (but when you have a severe fright logical thought flies out the window) but it is a little unfair that this case now has an impact on other anxious parents.

Hopefully peace will be found by all parties soon.

DarthMaiden · 18/07/2017 13:50

@WannaBe

It was stated in court that the parents legal team had threatened GOSH with a judicial review if they didn't come back to court.

friendlysnakehere · 18/07/2017 13:52

Yes, GOSH were forced to go back to court.

Maryz · 18/07/2017 13:54

This reply has been deleted

Message withdrawn at poster's request.

Sostenueto · 18/07/2017 13:55

Wannabe gosh had no choice being as the parents threatened judicial review.