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

Sandthefloor, I am fine with the thread? It's you who have an issue. I have been on the threads since the first one, not sure what your temper tantrum is about really.

You have an issue, report it, stop trying to de rail and cause trouble.

Charlies army are very excited, saying charlies going to America, not sure whever they know something we do not, or whever they are just reading false news?

Trampire, glad to hear it.

To say something in favour of CY though when I was seeking to get my son diagnosed with autism recently due to difficulties he was facing, many experts reactions were 'Oh well he can't be because he's too good at this or too good at that'.

In order to get the right help for my son I had to become an expert, I read everything that there is to read on the matter. This really helped me to help the experts understand where he was struggling (apparently he presents unusually because he masks like a girl would normally mask).

The point I am making is that CY may quite rightly consider herself to have exceptional knowledge of her son's condition. I can understand her completely for wanting to stay abreast of the medical side of things.

I don't think she should be at all criticised for that.

TinselTwins, I didn't post it but thought it was funny about the loo.

That will be my gallows humour and having a disabled dd though.

fair enough sand it was inapprorpriate but no threat or harm meant im sure

Sand, you've posted your disagreement with a post - fine, and I assume if you think it was in bad taste you reported it to mnhq - also fine.

No problem at all, this thread is neither the Borg nor a moderated fb group - different opinions are allowed.

As has been said on the many "there are too many people saying LTB" threads... if your opinion differs to the narrative, the only way to change that is to share yours.

I agree with all of your post Tinsel, no party line and that's why I don't like the thread police.

taratill, I know what your saying as it took us a long time to get a diagnoses and like you I learned as much as I could, but there are still experts out there that will know far more then we will.

So it is fake news that American Congress has voted that Charlie can be granted US citizenship?

I noticed the fuss being kicked up is about a toilet but not the floor of a bus. (Both pictures on this thread.)

We're definitely losing something with fake news and social media trumping all, but if gallows humour also becomes intolerable then that will be a real loss.

mucky its prob about the citiznship but that does not mean he can go anywhere theeyre just clutching at straws

OT - have you had a support thread here during diagnosis? I ask as I have a masking boy too (I see so much of myself in him it's unreal!)

11122aa, you tend to get obsessive about things and then a bit paranoid, right? (Not a criticism, I do it myself and so does my son with ASD, and I remember some of your other threads -- you sound calmer now than you did then, which is great.)

I think you need to find some distraction rather than getting into the discussion with your dad, as the family friction won't be good for you. Develop a sudden interest in climate change or cod fishing stocks? Or you could try half-agreeing with him to take the wind out of his sails: 'Yes, I know, it's a shame if the US doctor can't help after all...'

Breaking news on daily mail

Meant to say, that post is to tara

mucky of course (some of) the experts know more than we do.

I just think some of the feeling towards her on this is a bit too negative.

My son wouldn't have been diagnosed if I hadn't thrown myself into something I knew very little about before.

She won't save Charlie but she has as much right to make herself an 'expert' as I did.

Plus points - 'looking' in quote marks and mario is a "neuroscientist" not a surgeon.

Apart from that anyone can have treatment in the US so long as they can pay for it, you don't need citizenship 🙄

beyond yes I've been over on the SN threads.

DS was DX in May and daughter now going through process too.

I'm just coming to terms with it at the moment. There are so many so much worse off though and my heart truly goes out to C&C. So awful for them.

taratill, I get your point and agree that parents do need to become 'experts' to a degree on their child's condition.

She was right to do that.

I think, my criticism of her ( because I don't think that having a sick child or one with a disability turns anyone into an angel or someone who can't be spoken against) is that she actively encouraged the bullying of GOSH staff on their page.

I followed the page from very early on, she was bumping threats and commenting on allegations about the staff.

I think that is very wrong and it is still being encouraged albeit in a more subtle way.

Yes and I am angry about the autism light it up places being posted too. Because it's lies and there are enough lies flying around as it is.

I am confused about the US citizenship. I suspect I am not the only one

I am not having a temper tantrum. What makes you think that? Or is that just a pathetic attempt to make you seem rational and me like a child?

Anyway I'll leave you to it, but remember that these are real people with feelings. They are going through the worst time of their lives and that includes their extended family and friends - mocking them is out of order.

I have made a new thread but will wait till we are a bit nearer x