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

But these threads to me have been great because they have been well balanced, sensible and very informative. It is keeping my brain engaged.

Claire that's only been a few people on this thread, hardly hundreds and not spread across the previous ones.

I'm another one de-lurking having followed and appreciated the previous threads. I've messaged my support to GOSH and am appalled at the abuse they're getting.

I assume during the court case we will be able to:

• Share all publicly available information e.g. live tweets, press articles, headlines
• Discuss those and their implications
• Make reference to other public conversations e.g. Posts by the family on social media, posts by the family's support team on social media

I assume we will not be allowed to

• Make any slanderous comments about any aspect of the case or those involved
• Denigrate the family in any way
• Post screenshots of Facebook posts or those on other fora

@MNHQ please can you confirm so that the rules are crystal clear before the court session commences tomorrow morning (10am GMT). Thank you

I've been following these threads since the beginning as well. It's a tragic case to be sure, however, from a medical ethics and legal stand point its worthy of discussion due to the use of SM that's been demonstrated in this case.

De-lurking to add some support to the (hopefully) sensible and sensitive posts.

Firstly - here is another statement which Chris Gard posted on the CA page early hours of this morning with some clarification of their spokesperson situation:

*Further to my recent post, I would just like to clarify a couple of things.

It was agreed that Alasdair would read a statement on our behalf outside The Royal Courts of Justice, as I'm sure you can appreciate, after a very gruelling day in court, it is very difficult to then go and speak to the awaiting press. The statement he read out was run by us first and it was agreed that he would read it on our behalf. We were grateful and also happy with this.

Since then he has obviously got a bit carried away with himself and repeatedly appeared on various tv shows and done radio interviews without our consent and has continually come out with quotes which we would not and have not said.

Please only believe quotes that are from us or our actual spokesperson Alison Smith-Squire.

Thank you.*

I truly believe that C&C have been swept away in the storm waters of all of this and haven't had the time, energy or headspace to keep on top of everything that's been going on. Yes, there have certainly been things said which have been unwise on social media, and yes their families have definitely said many, many unwise things, but I genuinely believe it has come from a place of desperation and that many remarks have been made "off the cuff" so to speak without pre-thought or consideration.

I am someone who, for the most part, is very careful about what I say and do, I'm someone who is generally on top of things, I respond to texts when they come in, I respond to party invitations, my dc are always prepared for school, we don't miss trips or consent letters, or packed lunches or whatever - I am observant and keep an eye on what is going on around me to ensure I keep on top of things and nothing gets missed. In short, I am, by nature, a very organised controlled person.

A few months ago my DH was diagnosed with cancer and I can tell you that I have been completely blindsided - for the last few months I have missed so many things going on around me - either not even noticing they were happening, or just not having the headspace or energy to respond. I know I have said things I shouldn't have, I know I have dropped the ball on so many things, I know I have allowed things to be said and done that I would never normally let go, but I just don't have the headspace to deal with everything right now. My DH has a really good prognosis, we are not at death's door, and yet I have been completely blindsided and consumed by this. I can only imagine how much worse it must be for C&C.

There has been a lot of criticism that they aren't spending their precious time with Charlie, and I understand that criticism, but what I see are two young parents who are stretched so very, very thin - in terms of physical, mental and emotional capacity - and are trying their best to do whatever they can in this situation. They cannot possibly be on the ball 24/7, they cannot possibly monitor every statement made, they cannot possibly control everyone around them.

I disagree with their view of Charlie's future prospects, but I do believe they hold that hope of success so strongly that they genuinely believe they are doing the right (and only) thing, and are therefore pushing themselves to do whatever they can, all the while spending time with their precious son.

Interesting that sky news app still has the "cynical" comment online attributed to the "spokesperson" that the Guards have categorically stated does not speak for them. The press coverage of this case has been deplorable.
It's easy to believe that C and C have been misled by some inappropriate hangers on who have preyed on their vulnerability.

I've found it useful to read this series of posts. They've been informative with enough of a range of views to see a wider perspective. Through these posts, I have better insight into why people who have reached profoundly different conclusions to me, have arrived at their position.

I especially enjoyed the debate re the teaching of critical thinking. I wasn't online at the time to join in "live", but I see a similar lack of critical thinking in many other arenas.

I would prefer to stick to the rules and to continue these threads.

Sorry - total bold fail there

Feeling, I may be wrong but I don't think the Gard's have publicly said he's not their spokesman other than on CA. So Sky news et al might not be aware. This is why I think they need to make a public statement and completely disown him. And scupper UKIP's ideas for jumping on the bandwagon.

Here is Chris' most recent statement in case it gets missed in my rambling post above:

Further to my recent post, I would just like to clarify a couple of things.

It was agreed that Alasdair would read a statement on our behalf outside The Royal Courts of Justice, as I'm sure you can appreciate, after a very gruelling day in court, it is very difficult to then go and speak to the awaiting press. The statement he read out was run by us first and it was agreed that he would read it on our behalf. We were grateful and also happy with this.

Since then he has obviously got a bit carried away with himself and repeatedly appeared on various tv shows and done radio interviews without our consent and has continually come out with quotes which we would not and have not said.

Please only believe quotes that are from us or our actual spokesperson Alison Smith-Squire.

Thank you.

Is Alison Smith Squire the featuresworld woman?

I'll be watching this from now on as when I queried why one of my posts was deleted MNHQ accused me of severe parent blaming, Hey ho such is life

I think is interesting that UKIP are showing signs of trying to become a British 'values voting' or better 'emotion voting' party. What a nightmare. However extreme your views, if you can identify a group who will vote with their emotions only, and learn to manipulate that, you can have a national role. Just ask Arlene Foster.

Jed I hope everything works out for you and your dh recovers x
A great post which I agree with whole- heartedly. I feel more sympathy for the parents than before. I do admit it was waning really badly and even resorted to putting a post up (deleted) that was insensitive towards them. But after seeing the abuse they were getting last night re thought my feelings and found them wanting.
My anger at abuse towards Gosh, the prolonging of the case, when poor Charlie was laying in hospital with people haggling over him in court and not having peace and dignity really got to me ( still does) because this case needs to be resolved as soon as possible for his sake.
So now I step back a bit and will watch my PS and qs!

clairewilliams999 he wasn't a leading expert on pistonheads. It was reasonably basic stuff that had already been discussed by a couple of researchers on here.

If you go back a few threads it's all there.

A FB group wouldn't be an 'echo chamber', it's somewhere to talk freely without the constant moderation and deletions.

Certainly it was a really good one that evolved when some of us raised suspicions about the Dax case (and were proved correct).

I am not going to start one though, I am contributing more to other sites.

@jedbarlett I completely understand - when I had a close family member who was terminally ill I was unable to tolerate the tv or radio. The fact that life was carrying on whilst we were dealing with a dark time was unbearable and huge events that were heavily reported completely passed me by.

This was at a time when social media was emerging so we didn't have that added pressure. Even so a few years afterwards I couldn't remember little details about that time - for example who looked after my pets whilst I was away caring for my relative (turned out my friend did but it suddenly hit that I couldn't remember what I had arranged) It was almost as if I had walked round in a fog for 4 months. In many ways I was quite vulnerable at that time but I did have a wonderful support network who had my back.

Is Alison Smith Squire the featuresworld woman?

Yes she is, just googled her to check. They parted company but would appear they have regrouped.

Presumably these posts from CG are on her advice, hopefully she will more supportive and have less of an agenda than the UKIP numpty

Delurking, having followed all the threads.

Re the severe parent blaming, are we to assume then the the parents, any parents, are beyond reproach?

If the latest statement is sincere, why not simply close down the CA page making it clear to everyone that they don't support the behaviour?

I assume second post from Chris was after UKIP man said actually you asked me to read this.

I have posted a bit and found the threads really useful to see the facts, not the media /CA hype on the case.

But I do think as others have said that especially over the last week with a break in the court proceedings that Charlie has been forgotten everywhere.

There is more discussion here and everywhere about the parents, GOSH, judge etc. But he is central to this. I have also got drawn into the CA FB page but needed to stop as it became a thing to do and be horrified at.

The facts as I see it are that the judge will look at the new evidence that Dr H presented as part of the panel discussion, see if the other doctors on it agreed it was new evidence and how the treatment will work alongside the latest scans to show where Charlie is at.

If there is evidence that a) it can improve his quality of life long term and b) reverse some /any damage to his brain.

Sadly I don't think either is possible (as even in all this I had hoped there was a chance of some miracle but knew there wasn't really from reading the facts)

But then he will hopefully be allowed to be at peace

You see NellieBuff that's what I strongly disagree with, that anyone with a child must not be questioned or criticised, that's exactly why they have ended up in this awful media storm.

It's their site though, so I suppose you abide by the restrictions if you want to discuss here.

Nellie (I think it was you)

Sorry to go off on a tangent but what was the cat eating baby/baby eating cat all about?!

Fair enough, friendlysnake. I just think the people who don't agree with the majority on these threads won't put themselves in a position where their rl identities are compromised (and same goes for many who do agree) and you'd lose a vital element of the discussion. Although the ability to talk freely about aspects deemed unacceptable by MNHQ would be a plus point.

'Severe' is a bit Woolly. What constitutes 'mild'?
You could be of the opinion that parents in this position would be better off with their child. Is that Severe or Mild?

NellieBuff I haven't seen anything 'parent blaming' from you at all. You have been very generous in sharing your experiences with your daughter and I'm sorry you feel that you can no longer comment.

I assumed that most would set up a separate or anonymous FB for that, the Dax one was very intelligently run and we actually contacted Ronald McDonald house and something positive came out of it. It was also moderated to some extent.

It was only set up due to continued frustration with the heavy deletions on here and defence of the parents behaviour.

I don't have the appetite to set one up for this though.