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

There were some very odd posts on the Sun FB page last night about them naming people on twitter and then deleting the tweets

If true, given what the judge said about not naming the medics involved, isn't that sailing a bit close to the contempt of court wind ?

Any consolation Sostenueto I wholeheartedly agree with you.

Sosentueto, I also believe the outburst about the scans was done for maximum effect. I think there has becoming a pattern now of using any reason possible to allow supporters an excuse to attack GOSH. The immediate rush to social media when the pro life publicity seeking pastor wasn't instantly allowed into a secure unit with other sick and dying children was another prime example of this.

Thanks Ritamills x

Thanks Ritamills x

Thanks Ritamills.

Sorry phone is throwing a wobbly!

I've read that CY did Charlies head measurement herself and came out 2cm bigger than the GOSH result. My daughter has regular head measurements due to her condition (megalencephalic leukoencephalopathy with subcortical cysts). It has to be done several times and making sure it's done at the same points. It's very easy to get a different measurement just by the tape being slightly misaligned.

Agreed stitch.

I have just read a daily record article regarding a girl who has had a very similar disease to me. It's interesting (and relevant to this) that 85% of the details in it are incorrect. This includes side effects of the treatment, prognosis (although I understand this is more subjective), the types of treatmeant etc etc.

My point is, everyone takes information differently and it can be misinterpreted. I can tberstand that - there are things I didn't quite grasp in my treatment.

I guess what I'm getting at is whilst I struggle with the Gard's hatred of gosh, I can absolutely see how they can have got things so confused. Things are desperate and they're hanging onto hope gained through misunderstanding.

Just my musings I guess, but reading that article perhaps gave me more sympathy towards them where I admit I was becoming less so.

On "Welcome To Holland":

2001: I was a 22 year old student nurse, undertaking an elective placement at a specialist burns unit for both adults and children, when I saw a noticeboard with a poem on it, along side an advert for specialist make up that masked scarring from burns. It was titled 'Welcome to Holland'. I read it with a lump in my throat and found it uplifting and inspiring - Yes! So what if you thought you were going to Italy? Make the most of Holland and Italy be damned!

2005: I gave birth to DD1, everyone said she was 'normal', I wasn't so sure.
2009: Finally, other people saw what I did. She started falling over for no reason, too. Epilepsy. Brain malformation. Someone helpfully gave me a poem. 'Welcome to Holland'. Well I was never going to Italy and I don't want to be told that I'm going to stinking Holland either, thanks. I'll decide where I go, if it's all the same to you!

So, Welcome to Holland may inspire people who aren't in the situation, and it may inspire some people who are in the situation. But it will just make everyone else feel crap.

I've even started to doubt that the judge has the courage to say ' right original order upheld'.

I just spotted this in the Guardian, Hadley Freeman in support of GOSH/medicine/rationality. No comments open yet, but they usually do open comments on her articles. I'll keep an eye on it.
www.theguardian.com/commentisfree/2017/jul/22/charlie-gard-world-turned-medical-experts

While the NHS has many great attributes, I can't imagine it being well organised enough to mount a full on conspiracy. Anyone who's ever spent much time dealing with the system would know that

Nah, it's all the NHS managers faults remember? To hear some people talk about them you'd think that they were all death eaters.

My step daughter posted a picture of her son on FB yesterday - just friends only, not a public profile, but she posted a few blue hearts. She then got a whole load of comments from so called friends telling her that she had stolen the blue heart, that she was being cruel to c&c because a blue heart can now only be associated with their son. And even worse, the photo also had one of my dogs in it, a soppy old beast called Charlie. She's done quite a bit of defriending in the last day.

Well zzzz I don't think they ate cari.g for Charlie's needs, just my opinion like, and without the NHS Charlie would not still be alive.

Sostenueto I hope you're wrong there re the judge, we rely on judges to hold their nerve and do what's right, if judges start to cave in to populist pressure we're in big trouble.

The parents should be concerned that they are accusing a hospital and it's staff of lies, falsifying records and trying to commit murder. In addition to trying to name individual staff involved in breach of a court order under the guise of a 'thank you' tweet. You shouldn't be allowed to slander people no matter how heartbreaking your circumstances.

Lol zeezeek and thanks for info xxxxxx

stitch. Earlier this year, GOSH attempted to see if he could be moved (or the parents did - not sure) and nowhere else would have him. That may be the position with a hospice too. The other hospital trusts could see massive court costs looming and ongoing problems for their staff so declined to have have him. I would also assume they felt their treatment would not necessarily match GOSH either.

It was staged by C&C because they KNEW what the MRI would say, they were at the scan

Just seen this, Sostenueto, I wish I could tell you that you are absolutely wrong, but I have to admit the thought did cross my mind - and has lodged there.

Yes I saw that Bubbles, I just wondered if another hospital could be ordered by the court to take him if treatment were to go ahead.

It's ridiculous to suggest that this judge is going to 'cave' into popular opinion. Charlie's interests will ALWAYS come first. I think people on both sides of the debate are losing site of that tbh.

It just seems so far-fetched, yet it's a story that seemingly thousands of people are believing
I think it's like the people who believe conspiracy theories (9/11, Sandy Hook, Fake Moon Landings). Lck of critical thinking skills and being caught up in the hysteria of feeling "right" about something.