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

Oh, I agree. I'm just wondering what saying she couldn't 'see' the hospital notes could mean

Thanks for the court updates. Are the parents/ Armstrong arguing against the meeting transcript being used as evidence then? I'm a bit confused!

it sounds to me like they want DrH back "on the stand" so that their lawyer can twist his words. That's the "new evidence" - they think they can make his projections sound more positive than they actually are? But they're not getting to do that now so they're stumped.

Just a quick thank you for the tweets - much appreciated (in work so just able to keep an eye on thread and updates)

glad they clarified that rsidence meaning nothing

of course that would be goshs fault still

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

That certainly sounds possible

Also, by the time the notes have been cleared through the usual process for accessing notes, the most recent entries that have happened in that time frame won't have been included/cleared maybe?

so she could have ALL of the notes up to a few days ago, but is saying "hang on, where's yesterdays and todays? why can't I see them"

Again, not understanding that nobody is obstructing HER, that is just the process for everyone

Gabs there is clearly no hard evidence or it would have surfaced by now. In any case if this treatment has never been used on a child with Charlie's exact condition how can there be any evidence?

The figures they are using relate to a (very) small sample of children with a similar but less severe condition. I am not sure the judge will consider this evidence or even relevant.

The thread of replies under this tweet is delicious. Bless this woman patiently and kindly arguing with idiots (is she anyone we know?).

twitter.com/joshuarozenberg/status/888333936425914368

www.mumsnet.com/Talk/site_stuff/2985366-what-ever-happened-to-the-This-Is-my-child-campaign?watched=1&msgid=70591143#70591143
Now these threads are being said to be disablist.

To be fair, there had to be equality of arms here. If GOSH are relying on notes to inform their position, Charlie's parents and - most importantly - legal team should have access to them too

I think the discussions today seem to be getting a bit bogged down in who can inspect the notes. The issue is that everyone - including the judge- needs paper copies. There will be relatively few so they just need copied and provided. Thus ys the kind of thing that GOSH need to be pre-empting to try and cut all of these arguments off at the pass.

It would seem reasonable that his notes were fully discussed at the clinical meeting that she attended. Hirano et al would have had a chance to query anything at that time. CY was allowed to ask questions so the issue about the notes seems to be a stalling ploy. The judge has said he is relying on the transcript. What exactly CY could do with the notes is debatable and GOSH said they did not recognise her contention over the notes.

The judge is clear about what he intends to do. He is also hoping to make a judgement on Tuesday. Monday may bring more delaying tactics. We shall see.

ca stating that bcaus medics agree on many things it looks promising

not that it would cross thir mind thy agree on removing ls

To be fair, there had to be equality of arms here. If GOSH are relying on notes to inform their position, Charlie's parents and - most importantly - legal team should have access to them too

I think it's pretty safe to assume that they HAVE had the notes. This'll be about CYs interpretation of what she thinks "access" means, i.e. she may have copies, but wants constant immediate access whenever she walks on the ward.

GOSH have previously said that it's not reasonable to keep making constant photocopying requests, which indicates that she has at several points been given copies

Has the Guardian and the QC representing them got the notes ? They are also an equal party. They were not present at the medical meeting, as far as we know. It is them that represent Charlie.

@theweewitch shes holing her own thats for sure

thyre now accusing gosh of falsifying dr hiranos transcript coz hes not here an how would anyone prove what he says was correct

Well I assume they'll have him back on vidlink at some point, so they can ask him then...

thats the thing dont think theres anything more to say is there

Well I assume they'll have him back on vidlink at some point, so they can ask him then..

I think the point is that they won't, the judge is saying that the transcripts are enough

The parents I think want him back on the "stand"/vidlink, I think so that they can use language to make his stats sound more positive than they are. I think that's what they were counting on "but you can't say it WON'T work, can you?" etc

That's my understanding of it anyway.

There never was new evidence, they were just hoping to put a positive spin on DrHs testimony.

I can see Charlie's guardian is coming from the 'does this really HAVE to be dragged out to be as long and complicated as possible' view. The man came, examined, joined the meeting which is recorded by transcript, and was interviewed at the last hearing. What else is there to say? The whole point was this meeting, on which the judge tends to rely.
Why does he need cross examining?

All parties need the notes and they need to updated ASAP. This is only going to go on for a matter of days. Lose the battle and "win" the war (although there are no winners here) is the guiding light

Judge did no to that I think. He intends to rely on the transcript. These are provided by an external source I understand. Then agreed by all parties who were present. The judge says there are many areas of agreement. This would indicate the parents will have an uphill struggle to provide new evidence and the difference that new treatment/evidence will make to Charlie that is sufficient to change the original judgement.

Good point, surely the other Drs did the "cross examining" from a scientific rather than a legal standpoint (same in reverse too, gosh and experts could be "cross examined" by hirano and mario)

All parties need the notes and they need to updated ASAP
They don't though
If they have week old notes, what difference does it make if there isn't the latest fluid chart of exactly how many mls per hour of feed he had last night? it doesn't change anything, it's just stall tactics.

The notes cannot just be handed over, a "new set" would have to go through the same processes, and by the time they do they'ld be a few days out of date

They can't just taxi over all the notes and charts leaving CGs PICU staff with nothing, they would need to be formally copied, and that's not just a matter of whizzing it through a copy machine!

If they WERE given todays notes, then tomorrow they would say that they don't have the last 24 hours… and so on.. to infinity!

How will the notes provide new evidence and likely success of treatment? The notes are historical. They do not contain new evidence as such. The meeting discussed the new treatment and evidence was produced there so the judge relies on that. As he has said.

mamagin - how can they think we are discriminating against Charlie?

All we think is that such a terminally ill child with no hope of recovery shouldn't be experimented on and should be allowed to pass away peacefully. Does that not mean all the staff and GOSH are being disabilist too for thinking the same?

My heart goes out to Charlie and his parents for being stuck in this Social Media led whirlwind and I think all of us have said how utterly sorry we feel for C&C for being in this awfully upsetting situation.