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

It was agreed CY would attend the medical meeting where the Drs were comparing notes and medical info. There was no mention that she must have a copy of Charlie's medical notes. Therefore, she didn't get them. She was present when everything was discussed though and the meeting was chaired by a medical ethics specialist. She has had every opportunity to comment.

Definitely looks that way Panda81.

there's no impediment to Charlie's parents inspecting his notes

Are they saying they wanted copies then?

I agree with panda.

What would be the point anyway - they'd just say everything written in there isn't true.
"Charlie displays no signs of vision" - lie. Etc etc

Presumably they just need to send a request in writing, like you or I would. Perhaps that simply hasn't been done (not having a dig - it's a simple thing to overlook when you are dealing with more complex things).

Yes. The parents are saying this. However GOSH have queried that they did not already have the info.

Everybody can access their own or their childrens notes, but not instantly. I think they may have wanted to read them daily and instantly. There is a process to go through it just doesn't work like that.

GOSH did say that it was unreasonable to make constant requests for access, which makes sense, if the notes are always being taken away as part of the access process they're not available to the staff looking after Charlie, which is okay once or twice but not every day

I feel like it's an attempt to delay things too.

Agreed Rita You normally have to make a request for medical records in writing and wait for a few days.The hospital staff would have to copy them they couldn't just hand over the originals.

Also somebody posted on a previous thread a link to something that explained that there are some circumstances where parents wouldn't always be granted access to children's medical records.

I know they are suffering but C& C are beginning to sound more and more entitled by the day.

Maybe the parents think they haven't got ALL the notes?

Laiste It reads to me like GOSH had no issue with C&C reading the notes but they are now insisting they wanted hard copies and didn't get them.

They want to see his notes.
Surely they'll have asked someone before now?
And someone would have said 'write and ask'.
Did they write and ask?
GOSH are saying they have no prob with them seeing the notes.

Joshua Rozenberg @JoshuaRozenberg
·34s Gollop QC for GOSH: it's disappointing that we don't yet have notice of the new evidence the parents wish to bring.

Oh dear - the parents haven't seen the notes and that will just fuel the fire that GOSH are hiding something.

I'm sure that if parents did see the notes they'd argue and disagree with most things written anyway but at least they'd have seen GOSH weren't documenting anything that the parents hadn't been told anyway.

I thought that rita and then re read this

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

They say ''see''.

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

Joshua Rozenberg @JoshuaRozenberg*
·42s Judge: let's sit at 1000 rather than 1030 on Monday. Says he can't give judgment on Tuesday if evidence continues throughout that day.*

This concerns me, I can just see this being dragged out further.

Although the schedule of evidence for Armstrong to provide will be interesting as I'm not sensing there is much new evidence to suggest this treatment would have a significant enough success on Charlie.

I can't help but feel that deep in their hearts C&C know which way things are going to go next week and that claiming they aren't allowed to see his notes (for whatever reason) is just another desperate attempt at further delaying the inevitable once again.

I feel like this could go on forever. Poor Charlie

Hirano isn't technically "evidence", it's an opinion.

Are they saying they wanted copies then?

I think she did get some photocopies because GOSH said that it was unreasonable to keep asking for more photocopies.

So I read that as either she wanted GOSH to pay for multiple copies (for her to send to america etc)
Or
She was rocking up every day asking for copies of the latest updates/last 24 hours

GOSHs comment indicates that she did get some stuff copied for her since she was asked to not make an unreasonable quantity of demands for photocopies?

Thats how I read it anyway?

Don't forget the medical meeting lasted for 4.5 hours and CY was present. They clearly did discuss everything in front of her with Hirano and Italian Dr present. This is rubbudhing GOSH again.

When are they meant to be giving details of the new evidence?

So GOSH are saying they can read the notes, C&C are saying they can't. It's a case of 'he said, she said', as if things weren't confusing enough.

Joshua Rozenberg @JoshuaRozenberg
·1m Judge says transcript of clinical meeting amounts to a "frank exchange of views between world-class experts". Says he intends to rely on it.

I think C&C are wanting 'live' constant access to the notes, to be able to read them whenever they want as often as they want. Which is just not practical.