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

Sorry - got a bit carried away there - sorry to derail

Don't be. And you didn't.

One of the features of SM in this case has really highlighted how Nazisim and fascism don't appear to have any meaning other than insult top trumps for an alarming number of people.

I was reading your post and thinking, maybe this is where our generation fell down. We heard the personal, oral histories. But did we carry them forward ?

I'm not sure we did. I don't think I have ever told DS the things my grandparents and parents told me.

Your words carried real weight as they got spoken in my head. And I think it is the weight that grounds the things people say in reality. Which is what we seem to be missing.

. So if they brought the case to court themselves they must also have some indication that there is in fact new evidence or that a treatment might have some benefit.

I wonder if it was more that they were facing the choice of having to go to court anyway to get charlie made a ward of court, as i can't see the parents allowing them to terminate life support, so they'd need to legally removed from the room. Which involves police.

If the parents had new evidence it would be them that asked for a new hearing, not gosh?

what I do disagree with is the fact that it was GOSH who then brought this case back to court.

I think if they hadn't the parents would have, wouldn't they? Arguing that the new evidence from Dr Hirano justified a new hearing. I believe there were legal reasons why it was better for GOSH to do it preemptively rather than wait for the parents to do it.

I think these threads have been immensely useful not just in discussing the case itself (which is after all in the public domain and freely discussed in many other places) but in exploring the wider medical, scientific, legal and ethical issues. The discussions have also, as some posters have said, prompted people to have discussions with their own families about what they would want.

I'm sorry I was intemporate. The Nazis are very real to me. My dad wa a pilot in WWII, my mum was 14 when it started, and her sisters drove amuanes during the Btz. All my uncles fought in various ways and one was a truly honest to gooodness hero.

Both my gfs fought in WWI. One died in the trenches horribly, and the other eventually died of complications sustained from shrape when m mum was 11.

There have been times when, as children, we speculated on what might e aened to our families (and us) if we had been living in Germany at the time. Not only were we descended from Jews but we were now Catholics. I am disabled. Lots of points against us!

So,likening GOSH to anything to do with Nazis or Naziism is almost as unacceptable to me as it can get.

My keyboard is against me

According to Sky and the Daily Express a UK expert in mitochondrial disease also attended the meeting today so 7 medics in total- Dr Hirano, the Italian, the UK expert and 4 from GOSH.

www.express.co.uk/news/uk/829933/charlie-gard-latest-news-us-doctor-meeting-clinical-therapy-mitochondrial-DNA

news.sky.com/story/charlie-gards-mum-attending-clinical-meeting-with-us-doctor-10952448

I wish they would stop referring to Dr Hirano as a neurosurgeon he is a neurologist.

a UK expert in mitochondrial disease also attended the meeting today

I suppose that would be someone from Newcastle. A Newcastle specialist was consulted before the first court hearing and agreed with GOSH's assessment then.

I happened to see when doing my shopping a leaflet and info about the Rainbow Trust which is a charity to support children with terminally ill children. Just mentioning in case anyone is interested in their work.

I thought if anyone wanted to do any of the activities or events as a way of coping with this ongoing case that might be something of interest. I hadn't heard of them before.

rainbowtrust.org.uk

If people wish to discuss such issues CG case brings up, that is allowed is it not. If people do not feel the need to, no-one is making them. I'm glad we have a space to discuss all kinds of things on MN, even terminal illness. and people are able to let out what they are feeling, not bottling it up. We've had people from parents with very ill children to nurses and doctors on this thread, it must be helpful for them to discuss it.

At leat they are not calling him Mario I guess..

I hope that this may bring about increased involvement in the parents with communication and possibly decision making at an earlier stage and hospitals may take more consideration of that in future: possibly that may be something positive which may come out of this case.

Does it not occur to writer or editor that a surgeon is a tad less likely to provide a chemotherapeutic treatment? 🙄

Hopefully peace will be found by all parties soon

^^YY

I think this case has caused many people, as Maryz highlighted, to really consider the what ifs on a personal level. For some that will have come into really sharp focus as life intervenes, their child is badly hurt and their minds rush to what has been playing heavily on it recently.

I was on a thread recently which asked what do you miss about your life before children. I answered - not having The Fear. That dark and primal grip around your heart, about keeping them safe and sound in a horribly unpredictable world.

A case like this, where it is all too easy to empathise with The Fear another parent must be feeling.. must spark The Fear into overdrive in many of the people reading about it.

I am having to put my own The Fear under lock and key. It's bouncing around in its padlocked box, freaking the fuck out and wanting to talk to me about endless awful possibilities and all the stuff I'll need to know so I can somehow magically "futureproof" Squirto. If I open the lid just a tiny crack it'll spring out and run riot in my head.

There'd be no hope of keeping the lid on if we ended up with DS in hospital around now. So I feel for those parents. And your DH, cos it can't be easy having to talk people back from the edge of where their terrified imagination has taken them.

Yy lovely

Don't they do tht already, Lovelybath?

As regards the irish case and the heel-prick test, I assume (not a real clue, just a guess, not legal or a medic, just an interested party!), I assume it could be viewed in the same light as eeg or mri as declined by Charlies parents. A TEST for the sake of a test, or a test as part of a well-intentioned preventative scenario (and refusal of that test), is slightly different to a diagnostic test when a child is already ill. That could be seen as refusing to access proper health care for your child, hence a denial of their rights as a patient. So, refusing a heel-prick and wanting to treat your sick child with magic water and prayer, that would be a denial of their rights. But having control over whether or not they have a test (or indeed a vaccine) when they are NOT ill.............

Indeed, if you know that a child will develop (or is at a high risk of developing a condition) , to what extent are parents able to refuse monitoring if they wish?? There is obviously a line to be drawn here between parents being able to make parenting decisions as regards their children, and when a childs right to proper health care over-rides parental 'choice'. The difficulty drawing that line, I see no option that it is a matter of law, and sometimes judges will have to adjudicate on these issues.

What we as a society want to see as the law, I'm quite heartened by the fact that there isn't as much disagreement on this issue as some would like to pretend, that CA emotions aside, many people seem to prefer our current criteria to the US system??? I can't see that many people seriously arguing against a 'rights of the child' scenario in theory apart from those who just fear the state. It's the application not the principle?? And they have bigger problems, frankly, if they really think that the government and the judiciary and hospitals are out to kill babies.................

My god that lunatic is still raging on about the nazis, hitler and the 3rd reich. How is nobody taking this down???

I think they do. However in this case there was a message written about parents being a 'spanner in the works' which may not have helped things. Sometimes communication can be improved on, it is not helped by how busy hospitals can be and short staffed especially the NHS. I support GOSH and all they do, however online there are quite a few parents on NHS choices complaining about the communication there.

Yes I remember the Fear starting - does it get any easier as they grow older, probably not.

I hope that this may bring about increased involvement in the parents with communication and possibly decision making at an earlier stage and hospitals may take more consideration of that in future: possibly that may be something positive which may come out of this case

I don't know if that's a good thing
I can see how hospitals may decide to cover themselves by talking about worst case scenarios earlier and in more blunt terms
But having been a relative of a sick person, in the early days I couldn't even comprehend full sentences, and clung onto individual words that jumped out at me.

So being blunt about options form the start could just overwhelm and be counter productive.

Initially it was just the facts of the current situation. The "talk" about outcomes came later, when we were calmer and able to listen. I'm sure that that's what's already in place in GOSH, and it probably works okay most of the time.

I also don't think that the system needs to change, it's correct that a guardian and court steps in when there's conflict between parents and doctors. I"m glad that there's that safety net for my children too.

An EEG Charlie had on March 30 was described as ‘very severe’ by Dr Hirano in the April High Court case

And a new one taken on Sunday. From-

Read more: www.dailymail.co.uk/news/article-4704960/Charlie-Gard-brain-scan-April.html

Can anyone please explain how much info can be taken from these scans. I understand they show seizure type activity? Thanks.

I do find the fact that an adult cant chose when to die if they terminally ill something else that does need to change.

I keep thinking about Connie today, my heart breaks for her, I think that this multi team meeting will break her - there are good reasons why relatives are updated in gentler terms after MDT meetings. Shame on those who didn't allow her to begin to come to terms with things after the last court case

And poor Charlie having all these tests repeated.

Its so so sad

Especially as the treatment being discussed is probably very good, but it's probably just too late and now C&C and CG are being used and manipulated and when the users have moved on to their next poster child, the family will just be left broken and without any peace or closure (either way, whether CG lives or dies)

I'm honestly not sure either Tinsel. I guess I'm trying to clutch at straws and see what positives could come out of this case. Besides people bringing more cases such as this to court.

Maybe not so much involvement, as improvements in explanations? Not sure.