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

I think that one of the problems with this case and others like it, is that we keep hearing miracle stories of people at deaths door who the go on to make complete recoveries; but what the CA and others don't seem to realise is that for every miracle story of the child living, there are thousands of stories where the child died. It is only because the media report the miracle cures that we even know about them - but there seems to be a lack of understanding these are the exceptions and not the norm.

Maryz I find it extraordinary that in all of the wider family there doesn't seem to be one person who will say "just stop, it's ok to give up, it's ok to love him and spend some time with him and just step away from the madness. You've done your best, now let him go". This is probably the single thing that could change this awful situation for the slightly better. They obviously - one has to assume - have no one in their actual circle with the courage and the maturity to do this. Which is enormously sad. Who will be able to support them when Charlie dies?

The words of the refrain of a Doobie Bros song keeps going through my head with regard to the Gards

"What a fool believes he sees,
no wise man has the power to reason away.
What seems to be is always better than nothing,
than nothing at all."

And that's where C&C are. They don't want to accept the opinions of the 'wise men', i.e. GOSH and (I assume) the doctor. They would prefer to cling to their illusions because what's left if they don't is the loss of Charlie (i.e. the 'nothing'). And add to that the fact that they have an 'army' screaming that they are right adding to their delusions.

I can't find one bit of anger at C&C. Just pity.

Online a post has just gone up on CA about the demo at the British Consulate. Sorry I don't know how to screen shot!

Did C&Cs' lawyers say that they had not received the scans? As I would think that if they hadn't had them they would have made a big legal argument in the court regarding non-disclosure of evidence. It sounds as though C&C's own legal team are not discussing the state of the evidence with them - or perhaps the lawyers are discussing it but C&C can't or won't take in anything that doesn't support their opinion.

It will be interesting to see what is included in the schedule of new evidence that C&C's legal team was ordered to prepare. I don't know whether it is just me but I think there has been a subtle change in the arguments coming from C&C as during the past 7 days they don't appear to be emphasizing Dr. H and his research results as the big saviour - indeed they didn't want the meeting transcript used as evidence. On Friday they seemed to have latched onto a totally new UK case

Sorry Online your name was supposed to be in bold not italics!

Urgh that's the one I was talking about maryz. You know things are bad when someone resorts to quoting ukip...

There is going to be uproar no matter what he (the Judge) does....,

I agree, there are no winners in this awful situation

I think that whatever Judgement is made on Tuesday will only fuel CA on further, if L.S is switched off then the backlash will be a campaign about how GOSH staff are murderers and if treatment is permitted they will continue on their campaign of GOSH are all liars. And as has been said, even if Charlie does get the treatment I think that likelihood is that it won't work and then GOSH will get the blame for that too from the CA.

No matter what the outcome is, GOSH will forever be the enemy and the scapegoat.

I can't even imagine how the doctors and nurses must be feeling right now, to do such a worthy job yet be the recipients of such misplaced hate must be soul destroying. I've already nessaged GOSH once to offer my support but I will be doing so again on Sunday night to reinforce what wonderful work they do and show them that as threatened as they may feel, there are many, many of us who still hold them in high regard.

I've just had a look at the CA FB page. Heavens! I'm getting the feeling that some people believe a child can be cured just by enough people wanting them to be cured.

Surely common sense must tell you that if that were possible no child would ever be terminally ill or die?

I just been catching up with this thread and just saw the post where they had linked what various Dr's had said in the original hearing- so Dr A - Charlie's consultant has 25 yrs of experience with specialist interest in mitochondrial diseases? Has 140 scientific papers? Wow! It's not easy to get research published easily in medical journals- and has consulted for 2 other patients with Charlie's mutation? (That is 3 of the 16 persons ever known to have Charlie's mutation?) I bet she is very well known in Mito field & no wonder Dr Hirano
Was hesitant to come previously as he recognised it as a world renowned hospitals as well as probably knew of the expert- This is the consultant CY goes about slating in the media the saying 'the clinicians in GOSH are not experts in Charlie's condition' & yet thinks she is an expert now with few months of doing research- if she has really researched all the Mito papers, she probably has read that same consultant's papers without realising it was authored by her.

Stitch - I do, looking at the CA page on FB. Their narrative seems to be "there's a child who, admittedly, is not in the best of health right now, but there is a Magic Doctor who can 100% promise a total cure that would see him riding that bike, and the evil hospital & courts are conspiring to deny him that cure for no good reason".

It's the whole positivity/battle rhetoric in illness though isn't it. If you're positive enough cancer won't kill you etc etc.

@Maryz

On an earlier thread I posted that the CA FB was becoming like crack for me. I didn't want to keep looking but I just couldn't seem to stop myself.

When I found myself shouting and shaking my iPad in sheer anger and frustration at yet another totally untrue and frankly defamatory comment about GOSH I realised I REALLY did need to step away from it.

Since then I think I've gained a bit more perspective on it.

They are trapped in a bubble of mutual reenforcement where status (likes/sub-comment) seems to be gained by posters who increasingly seek to up the ante.

They feel endowed with a senses of worthiness and righteousness that fully precludes any factual analysis and critical thinking.

However, whilst they all continue in this vein, what they don't see is all the people who have looked at the site - maybe with a view to joining, others for information - and have come away feeling horrified and shocked by some of the content.

I strongly suspect there are far more of people like this than CA can imagine and that overall the site has done as much (if not more) to damage their cause than to promote it.

stitchglitched

Did it look quite big, or just the usual couple of handfuls of attendees ?

Online I saw fairly low intended participation rates. I think the highest had 26 people saying they'd come along. But that's not always a great indicator of the levels of enthusiasm off-line over here.

Online I could see about 20 people standing around, there are balloons and a big banner saying 'Charlie Gard's own best interest is to stay alive'. There seem to be quite a few elderly men among them. I'm assuming if there was a bigger turn out the photo would show it.

Actually I think I accidently counted a couple of people just walking by. Maybe less than 20 then?

I wonder if all the 65000+ members of CA are all so gullible that they believe anything C&C family say?
It will scare all of us parents when C&C make statements like 'when u take your baby to hospital you lose your rights on them' - most of us here are able to think for ourselves and look at GOSH's perspective- CA on the other hand believes whatever is drip fed to them on that FB page.

Yes Fetchez that is the sort of thing I mean. No acknowledgement that Charlie is dying from a terminal illness, just the assertion that he is only going to die because life support will be withdrawn and if that doesn't happen he could be fine eventually. I've never seen that level of denial about any other high profile children with more 'well known' illnesses, usually just expressions of how sad it is. It's bizarre.

There's a woman who has posted there saying 'I love you charlie' with kisses and blue hearts. I mean, why?
I think she must be doing it for the likes, maybe? TBH, I think that's why they're all doing it, for the likes, shares and comments. Makes them feel important or summit.

Do you think some people just don't understand that Charlie has a terminal illness that he is going to die from? Maybe because it's so rare and most people wouldn't have heard of it. I just can't imagine people saying 'look at him, he's a picture of health', 'theres nothing wrong with him' etc if he had a more recognisable disease such as cancer.

Well CA's are saying that he is a picture of health, chunky monkey, enjoying watching dvd's etc Their ignorance is utterly astounding and the sad thing is that it is probably fuelling C&C's fight.

Watching CA's interact on FB is worthy of an experiment in itself. The whole mob contagion that seems to be occurring is fascinating as well as horrifying. The only time I have seen it before is in regard to the Radfords (?) the large family. Someone criticizes them and then 20 people jump in calling them paedophiles/murderers/crazy bitch etc.

I don't think any court case decided in favour of GOSH whether brought by them for libel (or whatever) or brought by C&C for murder (or whatever) would alter the opinions of the CA type people.
It would be the establishment being tried by the establishment. Therefore the judges and barristers would be biased, or bribed.
I do think, and hope, the majority of people in this country understand the situation and support GOSH.
But then I thought that about Brexit and I was wrong.
I hope that concessions that Judge F may be seen to have been making to C&C are calculated moves to ensure the case is watertight.
He, after all, has to rule by law and not on his personal feelings or opinions of what his ruling may lead to.

What upsets me with the whole ca brigade is that there are healthy children dying miserable deaths the world over from lack of water, starvation and preventable illnesses, yet they seem beyond consideration or fundraising efforts, and there is all this performance over a single terminal baby, at the expense of causing distress to other parents at gosh.

Of course all life is precious, but prolonging it has to be tempered with compassion.
CA seems to have emerged from a misguided sense of injustice whipped into a frenzy of hatred against the very people attempting to help.

I feel that this needs bringing to a halt now as the longer it goes on the worse it is going to get.
I've also experienced having a child with a life threatening illness, my biggest concern was not only that I might lose her, but that the treatment was worse than the disease, if it hadn't worked I would have struggled to put her through it again; so I do think that there is an element of selfishness in keeping poor Charlie alive against his best interests.

I do think that this will damage the Gards long term too, if they have another child how on earth will they trust any medical professional?