Charlie Gard 14

[GabsAlot]

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

What better to say how I feel than Elgar our great composer.

I'm not criticising the solicitors or the barristers - I've done a fair bit of pro bono work myself. But, as a matter of fact, you are on the back foot to a certain extent re: client relationships when you take on a pro bono case. It's just the way it is

Dam you Sos you made me cry before going to work and I've to redo my eye makeup.

Sorry Nellie but I'm sure you are beautiful even without eye make up xxxxxxx

What makes you say that electrolux?

My heart feels so heavy this morning for C&C - I can't imagine how they must be feeling. My guess is that they have been prepared this weekend for the judgement going against them, and that (unlike some of the eejits on CA) they are not totally confident of "winning" the case. disclaimer: I know there are no real winners in this. I feel like they probably know that time is running out and that this is most likely the end of the road. They must be feeling sick.

Possible reasons for delay of hearing to 2pm:
A) the evidence is unanimous and conclusive and a 2-day hearing is not required
B) Dr Hirano will attend via video link
C) Justice Francis needed additional time as he either received documents late or the documents were extremely complex

We don't know which of these it is. Of course there might be other reasons and the press is speculating wildly, but that's all it is - speculation.

sost
two of my favourite bits of English music - made me cry too.
'The lark ascending' is so apt and thought-provoking for all of us.

sost Thank you for those two wonderful pieces of music. Has made me all tearful now

Morning all.

Sadly checking in for today....

Just spotted a handy timeline which I'll post below

August 4, 2016 Charlie born 8lb 3oz to Connie Yates and Chris Gard.

October 2016 Tests reveal mitochondrial depletion syndrome.
Believed to be only 16th sufferer in the world of rare strain.

Autumn 2016 Miss Yates finds specialist in US testing nucleoside therapy, but it has never been tried on Charlie’s rare type.

January Gosh doctors say drug would be futile because of irreversible brain damage. Parents contact US doctor.

March Gosh asks High Court to let Charlie die. Mr Justice Francis gives parents a month to make case for treatment. Daily Mail readers help raise £197,000 in days to help fly Charlie to US.

April Doctors say he is likely to be in pain. Judge rules Gosh should let him die.

May Court of Appeal upholds ruling. Parents appeal to Supreme Court.

June Supreme Court rejects appeal. On June 27, European judges back decision. Gosh gives parents more time with Charlie. Pope Francis intervenes, followed by Donald Trump on July 3.

July 7 Seven scientists hand Gosh fresh evidence showing higher survival chances.

July 10 Mr Justice Francis gives parents 48 hours to produce new evidence in case.

July 13 US specialist Dr Michio Hirano invited to London by High Court

July 17 Dr Hirano examines Charlie.

July 21 Court told scan results ‘very sad’.

Today, 24 July, High Court due to rule on the case, ten days before Charlie’s birthday.

I am likely to be quiet at work today so when the tweeting commences at 2pm, I'm happy to post if all are ok with that?

I think there is widespread agreement that the parents should have had legal aid Gobbolino. It is also fair to say the legal teams are well respected and they have had QCs on the team. In addition barristers frequently get instructed the day before (the evening before!) a case in the family courts. Lots of things are not ideal.

I don't see what other action there can possibly be if mediation has not been accepted or has failed. Whatever happens next in a case where there is fundamental disagreement between a hospital and a family, there has to be clarity about end of life procedures. I am not sure how many of these cases reach the courts. There are also hearings at the Court of Protection about end of life decisions where everyone agrees. I don't know what else GOSH could have done because the relationship deteriorated with the parents and no other UK hospital would treat Charlie so they were backed into this situation.

I've been lurking since pretty much the beginning but not posted until now - but I am spitting feathers this morning.

Heart Radio news at 8am mentioned the return to court today, then played a recorded statement by someone who is unconnected with the case who explained she had phoned GOSH to tell them she thinks they are wrong and wanted them to know that.

How is that "news"? How is it in any way appropriate for Heart Radio to encourage some randomer to phone the hospital to give her unsolicited opinion on something that she has no connection with? I'm genuinely furious at such an irresponsible piece of "journalism".

Such thoughtful words sostenueto, brought a tear to my eye.

My gut feeling is that the US doctor has said he would be unable to treat little Charlie after examining him, leaving no real room for further discussion and a decision will be given today.

My thoughts will be with Charlie and his parents today, and with everyone who has been affected by this sad case. I'm going to make sure I enjoy the day with my dd who is nearly the same age as Charlie, aware of how very lucky I am to be able to do so.

I didn't hear that but did they play it to illustrate the pressure the hospital is under? What was the discussion/commentary around the clip? Seems a very random thing to do with no context.

There was no discussion or commentary around the clip. It was literally "The case of Charlie Gard is back in court today. This lady phoned the hospital to tell them what she thought. [Person's statement, "I wanted to tell them it was wrong."]" Then the next news item.

cjt110 yes please, I'm going to be out and about so I won't be able to follow live this time.

I've sent in a complaint to the radio station.

sostenueto - what a lovely post to start today off I feel very somber this morning just thinking about what today holds for C&C, I can't imagine what they must be feeling this morning.

cjt110 - I would very much appreciate the Tweets from Court, thank you.

Yes please @cjt110!

Tea well done. I've had a horrible experience with a news journalist from Heart and she was utterly lacking in compassion and professionalism, saying utterly hideous things about my son, trying to make me cry to get a better interview.

Last week, Michio Hirano ... told the court that the previous scan showed “no evidence” of irreversible brain damage....

I think there might be confusion with the use of the word 'scan', it can mean a lot of different things.

My area was cardiology (I know what an EEG looks like and I can spot a 'K' but that's about it).

Anyway, in cardiology you have a various tests, an ECG will show if you electrical activity so you can see the rhythm and you can see some structural damage caused by a heart attack but it will not show you what the condition of the heart valves is and unless someone is having angina while recording will not show how the coronary arteries are functioning.

Still with me?

OK so if a cardiologist is asked if an ECG shows any damage to the coronary arteries s/he can say no, there is no evidence of that.

This could easily be reported by a newspaper as a 'scan'.

Some of the discussion here has been about future cases and anonymity, would it be better if there was a blackout on reporting etc. I found this an interesting piece on the topic, apologies if it's been posted before: www.transparencyproject.org.uk/kindertotenlieder-and-the-limits-of-transparency/

Yes please to the Tweets and many thanks for volunteering to post them. Much appreciated.