Charlie Gard 14

[GabsAlot]

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

Re Chris Gard's statement on FB,good for him to have taken the time to have written that, and hope he distances himself from the Pastor as well as the Kipper.

Oh goodness..Just looked up Jahi McMath,just so tragic..Poor girl, poor family.

I think the statement was written by features world woman rather than CG. I wonder if she is working 'pro bono'?

Please also let me know where to find private fb group, as well if it is offered. I've been following for past 11 threads!

Ive been following this case for a while and I think the whole thing is just so sad... I hope that the parents get plenty of good quality support after next week regardless of the decision, they must be hurting so badly...

I agree that cases such as these in the future might need to have a total media block from the participants... It seems a shame because transparency in the legal system is so important, but it's a good way to protect all of those involved from the mob mentality that we've seen over the past few months.

I'd prefer it if we stayed on here rather than Facebook particularly as we've kept it 'clean' and above board for 13 threads.

I've found the threads so interesting & it would be such a shame as like someone else has said we weren't 'together' Monday/Tuesday

I've lurked and commented a few times. A Facebook group isn't necessarily any better as you always get people screenshotting comments and potentially sharing elsewhere and it lacks the more professional moderation of MNHQ. But it would be also a shame not to have anywhere to speak about it. I agree MNHQ should come and say more clearly what is and what isn't allowed to be said rather than just referring to the Talk guidelines.

Someone mentioned a while back that the atmosphere in the PICU must be terrible. I can't help but think there must be staff off sick due to this, the long term effects on the unit and the wider hospital could be huge.

It's like an out of control avalanche and Chris is trying to veer off to the side, finally, but the momentum has already taken them too far.

Now it's like damage limitation and trying to gain back public support because they believe that is going to make a difference... like it's X factor and the more likes or "votes" then the more likely they will win.

This is not parent bashing, because like everyone here, I feel desperately sorry for the parents. I wish there was something someone could do to help them!

My guess is that MNHQ are keeping a close eye on this thread and we haven't had any more deletions. I would rather the discussion stayed here too, I feel safer here and prefer anonymity, even though shortly after I joined mn many eras ago, the site was about to be sued... it's made them nervous legally ever since. As well as that outstanding citizen who SWATTED Justine.

I wonder if the judge will have a preliminary meeting on Tuesday in private with the parents and the lawyers to tell them the outcome and to give them the choice not to be in court to hear the detail.

If we go elsewhere for this topic and I be included.

*can I be included

I wouldn't join a FB group, sorry. I use FB professionally and value the anonymity of MN. I'm happy to join others in adhering to the rules and keeping these threads open.

A FB group would be a bit of an echo chamber. I like the threads on here as they are open to all reasonable comments, whether Imagree with them or not.

Delurking to say I'm following all of these threads. I haven't posted mainly because I don't have anything new to add but I'm happy to try to dilute the deleted posts!

I am a bit annoyed that MNHQ are deleting posts. I understand their position but I agree with a PP who said it's also good to be able to counter those views and give a more rational debate, rather than censoring. But I completely understand that MNHQ probably don't have a lot of options.

I'm not sure what I think of CG's statement. I think I might like to see that being given more formally, rather than just on the CA page. I really hope they've got better advice to go forward. They're going to need it this week more than ever.

Please keep positing. These threads need to make it through Monday & Tuesday.

Another one here who wouldn't want a Facebook group.

I think that these threads have been respectful and so informative. I don't think they will be deleted.

Morning all x

Anyone about?

I'm delurking to dilute the deleted posts as well. I have found these threads and discussions very informative and would like to continue through the court hearings.

One thing this tragic situation has opened my eyes to are the dangers of involving social media to gain widespread support. I feel really sorry for the parents as I cannot even begin to understand how they are feeling right now. I can understand them starting this social media campaign to get heard and put pressure on GOSH and the courts when all the judgements went against them. People close to them whipped up an emotional frenzy and that did get them the delay they wanted and another hearing at the court. But now the social media beast that was unleashed has grown very strong and is no longer in their control. The comments sections in papers are now more supportive of GOSH and critical of parents, just when the court judgement day is here and they need all the support they need.

I hope they go off the social media completely and surround themselves with friends and family who can support them through this. I hope the friends and family can give them strength to cope rather than add to their helpless and wronged feeling.

No matter which way the court decides, my bet wishes to the parents and the child.

I must say,,MN discussions on the tragic case are the best, most informative online anywhere.
The mix of people, all very fair and balanced, and the links very useful. Many thanks for making those easily available to all.

What, 100s of people saying 'please add me to facebook' or 'oh I'm not on Facebook'. Not informative at all. On Pistonheads, there ia a thread where a leading specialist in this field joined and over several posts and specially drawn diagrams, explained the actual condition in huge detail but in laymans terms. Explained what the potential miracle cure was and all the reasons why it was futile. Explained the extent of CGs damage and his future prognosis in detail. Now THAT was informative.

Tiredtimster

I've found the same, American tweeters have made this in to 'socialized medicine kills babies' and 'bring him to US for a cure'

@Shwangalangadingdong

I've reported your post.

@clairewilliams999

Quite a few of us have been on the pistonheads thread and it's been linked to quite a few times.

I would like to be pm'd about any fb group please. I also was on the Dax one I think.

I'm confused as to what we are allowed to talk about now and with the court case coming up, it would be a shame for the threads to be zapped before or during it.

I wonder who will be their next spokesperson?

Yes sadguru I agree. It is so easy to come off social media and for the life of me cannot understand why they haven't
Maybe for some its a support system they may not have within a family.
Maybe social media has become the overriding factor for a lot of people, like having loafs of 'friends' who are there for you touch.
My gdd 15 does not use it hardly at all. At one time even I thought that was unusual. Mind we were relieved because of the horror stories you hear, in fact there was a 15 yr old girl committed suicide last month due to cyber bullying in our town.
When I asked gdd why she didn't use it, she just said, I am not at the stage in my life where I have to rely on 'virtual' friends and a 'virtual life: to exist!
My goodness she is right!