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Charlie Gard 14

999 replies

GabsAlot · 22/07/2017 20:49

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

OP posts:
Thread gallery
7
BubblesBuddy · 23/07/2017 09:54

Kanga (not kangaroo) sorry!!!

Argeles · 23/07/2017 09:55

It's terrible to think that families of ill children have been subject to threats and verbal abuse. I think it's sick, and I do not understand why or how anyone could do that.

I do not condone threats and abuse of the staff either, but I can understand that many people feel enraged and helpless over the Charlie Gard case, and may lash out in this way out of sorrow and desperation.

I never thought I'd say that I wish David Cameron was still prime minister, but just for this case I do. I truly believe that he would have intervened on the quiet and allowed Charlie to have a trial treatment. I say this, as he had a severely disabled child. Also, when the parents of the boy with a brain tumour/brain cancer 'abducted' their own child and drove him to Spain for treatment, there was talk of prison and taking the boy back into NHS care where he would have died. Thankfully, the boy had the treatment and is still ALIVE. His parents were not prosecuted, and no way should they have been. I think Cameron must have intervened and allowed the parents to not be prosecuted, and for the boy to be treated.

I just fail to see what the fucking problem is in allowing Charlie to receive trial treatment. His parents have raised the money, taxpayers would not be paying a penny. Trump and the Pope, and medical professionals in America and Italy are ready to assist, but it seems that GOSH just think it's acceptable to let a baby die. Everything should be done to allow this baby the chance of life. It's inhumane to treat this baby in this way.

Please give his family and the country some hope. As a country we have had several acts of terrorism, and Grenfell in recent months. Please allow his treatment for him, his family, for the country. We need hope. The very best needs to be done for Charlie.

BeyondDrinksAndKnowsThings · 23/07/2017 09:56

I think it was "they're not supposed to be read like that", which has two potential meanings imo...

  • we're not supposed to find out by them being read out in court
Vs
  • the results are not meant to be interpreted that way
ManyManyShoes · 23/07/2017 09:58

This reply has been deleted

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BeyondDrinksAndKnowsThings · 23/07/2017 09:58

Argeles, have you read the ethical issues raised on these threads? Do you have an argument against these specific issues?

friendlysnakehere · 23/07/2017 09:59

There is a very poignant post on the GOSH page from the grandparent of a very unwell child there who said that he was prevented from using the garden by some protestors.

He said that he had just wanted to escape the hospital environment for a bit.

BeyondDrinksAndKnowsThings · 23/07/2017 10:00

It is my opinion that "the very best" for a dying baby is not to use them as a guinea pig when there is no evidence that the therapy will improve their life significantly.

I'd like to know why you think "the very best" is to do the opposite?

ManyManyShoes · 23/07/2017 10:01

And 'Thunderclaps'? God, grow up, Charlie's Army!

Saucery · 23/07/2017 10:03

Argeles, the very best is being done for Charlie. No one has gone through all this with anything else at the forefront of their minds. Not his parents, not GOSH.

Lelloteddy · 23/07/2017 10:04

Argeles you have no moral objections to a terminally ill baby being experimented on like a lab rat ( with the added complication that lab rats actually have more legal/ethical protection in a research setting than Charlie) ?

Sostenueto · 23/07/2017 10:04

Argels the very best is being done for Charlie hence the court case. It would be ethically wrong to give untested treatment to anyone let alone a vulnerable baby. The court will decide whether this treatment which has never been tested in a laboratory and has not been used on anyone with Charlie's TYPE of mitochondria or brain damage whether there is enough EVIDENCE that it will improve Charlie's condition enough to give him a meaningful life. We do not practise life for life's sake here. Charlie's interests are paramount not the parents wishes.

Ceto · 23/07/2017 10:04

May I be a dissenting voice and say I hope this doesn't go to fb? My fb account is in my professional name, and I don't use it for anything else.

Likewise.

No parent bashing, no slander, stop screenshotting things to here from CA and keep the discussion civil and about the issues. Then there's no problem discussing it here.

What Venus said. I think rushing off to FB is a bit paranoid, to be honest.

goodbyestranger · 23/07/2017 10:05

I must be missing something extremely obvious here but the mum was at the meeting which followed the scan and where the results would have been discussed, wasn't she?

GabsAlot · 23/07/2017 10:06

argeles sorry to disagree but no pm should get involved in a court case woul be completly wrong and bias to do so

the doctors all agreed he couldnt bee hlped in thee original heearings if you wold lik to read th links in the op

no doctor even hirano wanted to hlp so how do u suggest they would go

we dont know how it went on monday yet but keeping someone alive at all costs is not how judge francis is looking at this

OP posts:
Sostenueto · 23/07/2017 10:07

Seems people are not reading warnings about what to post.

Yamayo · 23/07/2017 10:08

But the very best has been done for Charlie! He's been treated in one of the best hospitals in the world by one of the few experts in his extremely rare condition.

Treatment was looked at but his deterioration was so severe and rapid that by then it was too late.

The problem is that sadly for him there is no hope.That's what so horrible and hard to come to terms with.
We hear/read feel good stories on SM all the time- the harsh reality is that in most cases there are no miracles and children die of disease every single day.

As for the brain tumour case you are referring to, read the facts.
The story is not quite what the parents presented.

Ellie56 · 23/07/2017 10:09

goodbye as I understand it the results were of another scan that had been carried out the day before.

AccrualIntentions · 23/07/2017 10:09

Argeles - your last point about "we need hope" sums up my problem with this whole tragic case. It should be about the life of a terminally ill child and nothing else. He is not here to assuage some kind of public despair. He should not be experimented on as a way of somehow making up for Grenfell Tower, or the London and Manchester attacks. I also find your comments about David Cameron misguided. He's the only one who could show appropriate empathy because he had a severely disabled child? What of other parents who have been in similar situations to the Gards but made the heart-wrenching decision to let their children go? Did they not care enough?

It's not about the public, it's not about the social media "fans", it's not even about the wider Gard family - the focus of all of this should be what is best for Charlie Gard and that's it. All the rest is an irrelevance and a distraction.

blueskyinmarch · 23/07/2017 10:10

Argeles you are very much entitled to your opinion but I have to disagree with you. In my opinion it is inhumane to allow a child to remain in a dying body so they can be used as a guinea pig for experimental treatment which at best it would seem might allow him to breathe a little by himself but would certainly not cure him in any discernible way. No one is trying to kill Charlie they just want nature to run its course as peacefully and painlessly as possible. He is never going to have a chance at a normal life. No treatment in the world will facilitate that sadly.

I also disagree with your comment about David Cameron. He would not have tried to intervene, no PM would. They cannot intervene in judicial matters. That is exactly why we have the system that we do.

goodbyestranger · 23/07/2017 10:11

Thanks Ellie.

Sostenueto · 23/07/2017 10:11

Well put accrua

Mamagin · 23/07/2017 10:11

Argeles I wouldn't for one moment agree with abuse and threats to anybody, especially not the staff at Great Ormond Street.
Any prime minister is not above the law, and would not be able to intervene, either publicly or privately.
Ashya King has not been 'cured', his cancer is in remission. The treatment he had was at the time risky, the treatment he was getting had as good a chance, and the parents delayed his treatment by abducting him.
Charlie is terminally ill, and the treatment offered has never been tried in his form of the illness, it has side effects, it could, at best, allow him off the ventilator for short periods.
If you have an afternoon, then go back and read some of the previous threads, which explain far more clearly and in more detail than I can.

Puzzledandpissedoff · 23/07/2017 10:13

Is Alison Smith Squire the featuresworld woman?

Yes she is - an unusual choice for an "official" spokeswoman I'd have thought, but there you go

Can I also agree that quotes from CA might not be the best thing to put on here, especially as it's not always made clear whether it is a quote or the poster's personal opinion. The CA nonsense is easily available for anyone interested, but it seems a shame for the broadly sensible threads on here to be polluted by that kind of nonsense

Lelloteddy · 23/07/2017 10:13

'We need hope' ?

No a vulnerable, terminally ill, defenceless baby needs to receive the most appropriate medical care available to ensure that he is not in pain or distress.

GriefLeavesItsMark · 23/07/2017 10:13

A closed or 'secret' Facebook group would, as others had said just become an echo chamber, and I am guessing that CA have at least one.

I'm not sure if features world woman has been there all along, but just taking a backseat. If not her, who was managing all the media appearances? Interesting the lack of 'celebrity support', have celebs been advised by their pr management not to get involved.

I still feel so sorry for the parents, it is heart breaking to look at their early photos of them looking proud and happy, compared with now.