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

Joshua Rozenberg @JoshuaRozenberg
·37s Counsel for Charlie's guardian asks why Dr Hirano should need to give evidence beyond what he said to colleagues at the clincal meeting.

Charlie Gard's parents tells Mr Justice Francis they were not allowed to see his hospital notes

see this is yet another example of something that can be true and false at the same time
CGs parents are probably allowed to apply to see the notes through the usual process, and have probably already done this a few times
And
CGs parents are not allowed to walk onto the ward and demand to see the notes instantly whenever they want

The Judge is putting his foot down.

Re the notes. Thinking about the potential for something along the lines of siege mentality, is it possible the family believe other (maybe hidden/secret) notes exist, and GOSH is trying to keep them under wraps ?

I know it seems outlandish, but I've come to similar conclusions in my time, in far less high stakes circumstances, when I started to get somewhat paranoid about the transparency of the authority I was dealing with.

That's a big one from KG!! They have not presented GOSH with any new evidence?

What's KG?

Btw, someone said (last thread mayb?) that hirano wanted tests interpreted by paed neurologist?

The Italian dr is a (super duper) paed neurology specialist - head of the dept of neuromuscular and neurodegenerative disorders at a children's hospital

K G is Katie Gollop the barrister for GOSH. [typo edited by MNHQ]

This is a court. Withholding info just will not happen. So many world class experts were present at the medical meeting. There was a full and frank discussion. A transcript was taken. What else could there be hidden in a cupboard?

Re the notes, something else for CA to seize upon. There was mention of the notes in court previously. Could be another delaying technique or it could be that C & C are wanting to see updated notes on a regular basis.

I would be losing my patience if I was Judge.

Where IS the actual credible evidence that C&C wanted bringing back to court a week ago?!

Everything that is being discussed this past week and especially today just appears to be old ground or insignificant issues like not seeing notes, all it is doing is delaying the inevitable.

If they had significant credible evidence then surely they would have shown it by now.

I feel very sad for C&C but all these delays are not helping anyone - including themselves and let alone poor Charlie.

In case no one know

@JoshuaRozenberg. Is reporting from court now. On Twitter

KG - Katie Gollop QC

0nline

The NHS is in an inbetweeny stage where its still part digital and part old fashioned paper "notes"

CGs "charts" are probably all digital, and wouldn't automatically be duplicated into the paper notes

When people request to see "notes" they don't usually mean the charts too, they just want to see what the MDT have written

Maybe they think the charts are being "withheld" because they weren't duplicated into the notes that they got copies of?

(Hopefully not in contempt of court to say that!! No sex given or the hospital - as it obviously isn't their role at the Vatican!)

KG is the barrister for GOSH.

Grrrr. We are following it. Hence comments above!

Maybe they are trying to spin it out until Charlie's birthday.

Ellie which would be purely for their own benefit, not Charlie's

The live tweets of this hearing haven't been picked up on in CA from what I can see

CA on twitter thinking the transcript is going to be falsified by GOSH 🙄

Joshua Rozenberg @JoshuaRozenberg
·33s Gard: judge asks all counsel to draw up agreed order following today's hearing.

K G is Katie Gollum the barrister for GOSH.

I know this is just a typo, but given the beating she's taking from some segments online, harsh! :)

You'd think - if they had amazing new evidence - they'd present it asap in court so they could crack on with Charlie's treatment. As every day counts.

The fact that this hasn't happened, makes it look very much like delaying the inevitable (possibly til 4th Aug) :(

I do feel that Charlie's Birthday is a significant date. If things get delayed another week say then that brings things very close to that date.

The judge did say last time that he was (or is it wanted to?) give judgement on 25th and I hope that does happen

My guess is that they want to see the doctor's notes, the nurses notes and probably the written reports from other doctors who've seen his scans and offered their opinions.

Seeing your own or your child's notes is a long-ish process that has to go through the legal department of the Trust and patient/parents have to pay. There's a lot of forms and paperwork that have to be completed and it's not a straight forward process. It's not just a case of 'putting a request in writing' and then being allowed to see them.

The doctors on my ward are a nightmare for leaving the medical notes lying around the patient's bedside and we often find parents casually reading them. It then makes it so awkward for the nurses as we then have to take them off the parents and explain they're not allowed to read them.