Issues raised by the CG case 11

[Venusflytwat]

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

If this isn't tried and tested treatment, and they are currently unsure how much Charlie is suffering...how will they know if the treatment is causing him pain/to suffer further?

goodbyestranger,that would make sense, if though the parnts did not belive Gosh, why would they not belive the American doctor? does that make sense? what I mean by that is by refusing the scans it maybe refusing to belive charlie is as bad as he is, denial? but if it were just Gosh that were at fault then Connie would have no qualms about letting the American doctor scan charlie?

ChishandFips33, I think they are under the impression the only side affect is dihorea, but as someone said that kills I think it was half a million people a year, I could be wrong on that figure and being vunerable like charlie he is evenmore at risk.

This idea of supposed 'improved functioning' as a consequence of treatment does not guarantee improved quality of life.

What if , having undergone the treatment, the outcome was a heightened/acute sense of pain?

I think in the latest hearing the judge did say scans may need to take place anyway

despite what the parents think I guess

They seem to trust the American doc more,

muckypup I'm filling in gaps with the little info we do seem to have and could be drawing completely the wrong conclusions, but it sounds as if the tests were completed on Sunday and the US doctor travelled overnight Sunday/ Monday so perhaps the parents were insisting that if the tests absolutely had to be done then they shouldn't be done by GOSH but under the watchful eye of the US doctor, in case of 'cheating'. And perhaps GOSH said we simply can't accommodate that - their QC did say there were extremely complicated logistics required to do any unscheduled scans for Charlie, other sick children were in the queue too and that they needed parental permission by Friday night.

Did you know people with MND in UK, when they get to stage of needing ventilation, don;t usually get it and are allowed to die at that stage? This was from an article in the Times at the weekend, the story about the man with it and the wife writing her book about I found my Tribe? and swimming. In case anyone else saw it. Her husband is only alive as a private hospital out him on a ventilator at one point.

Yes lovely, one unanswered question was why and when was he ventilated in the first place?

The only thought i have is maybe the decision to ventilate was made prior to his brain damage, when treatment was still an option?

I hope Gosh have listened to the us doctor and apply to the court today to have this all dropped immediately so Charlie can go ASAP, knowing that the judge has more or less said that any new evidence that states Charlie is in with a chance he'll allow him to go, if gosh had any decency they should do the right thing now rather than wait for the final hearing in another week or so 💙💙💙💙💙

posts like this make me angry, how on earth do they know what the judge is going to decide? how do they know if its new evidence, especially as this doctor has previously said treatment would be futile???

Yes possible really.

I think with the man mentioned, he wanted to stay alive due to not being in pain and having young children so even though couldn't move (at all) he wasn't brain damaged in such a way. I was surprised to hear most with MND don;t get that chance to continue with a ventilator, if they wanted it. Well that was what the article said anyway. Sad story.

Just been on radio 6 news about a parent of a child with autism challenging NHS for a new treatment which is apparently unproven. Wonder how many more of these cases we might get now.

I know Mucky. I hope the parents are maybe having a break from this stuff. as it seems if off FB.

LovelyBath77, that is why this need nipping in the bud now, and there is no cure for Autism, good god where do these people get off?

LovelyBath77, I truly hope so.

So what is happening now, does anyone know? is anything happening today?

if there wa a confidential hearing im guessing it was to order the scans r hirano coulnt possibly make a judgmnt on 4 month old + scans

maybe it wa also a media blackout on the meeting

From what I have heard, it isn't about trying to cure this boy's autism- he has another condition (I think one of the ones they do the heel prick test for) which means that he can only eat a tiny amount of protein without causing damage. This drug would allow him to eat more.

Think issue with autistic child is he is suffering a condition where he can't absorb protien so he can't eat anything with protein in it and due to autism being bad they are having issues trying to make boy realise he can't eat certain foods. Also this disease can damage brain if too much protein eaten. Only very vague about this and they want him to have drug costing £100 a day that will allow him to absorb the protein or something to that effect. NHS said nope too expensive and not many benefits for the cost.

The child with autism: I only caught a brief clip on the news and can't find the details, but I thought the treatment sought was to help him tolerate more protein in his diet rather than to 'cure' his autism. Has anyone got a link to the report?

I see. Well suppose they need to explore ways he can eat protein, we need it don't we.

mucky it should be the meeting today

As I recall, he was ventilated before he had been diagnosed, because one of his symptoms was he was having difficulty breathing. mitochondrial disease suspected then confirmed after genetic tests. Sadly, the fits and supposed brain damage came later whilst the nucleoside therapy was being investigated. Timeline on wikipedia, based, I presume, on documents submitted to the courts. This exact variant does sound like a devasting disease. Loss of hearing was another symptom.