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

Thanks for that post Jed. Very telling about all the aspects of the parents' situation that are just unimaginable.

There have been 13 previous threads that have discussed the legal, ethical and social issues around this case without being deleted.

For all the people 'delurking' to ask to be added to a FB group, perhaps you'd be better doing that if you don't feel that you can actually contribute to these threads AND stick to the very clear guidelines issued by MNHQ and summarised upthread.

From a practical way of supporting GOSH, one of their volunteers posted to say that a bucket collection at Silverstone had to be cancelled last week because of fears about the safety of staff. There is a very real danger that future patient care and comfort will be negatively affected so I'd encourage anyone who wants to do something practical to look at the GOSH pages and look at setting up DDs or purchasing some stuff from the online shops.
Postitive messages of support via FB are still being read and acknowledged.

what do you all think can be learnt from this entire process - what changes need to be made in all areas to prevent not just initial breakdowns but the SMOG frenzy that followed (and slightly dubious media reporting)?

IMO...

We already know that SM uses algorithms and formats that nudge humans, already a bit prone to liking being in an echo chamber, into sealing themselves in that much tighter. And we have long known how the hierarchy of an echo chamber can lead to a vicious circle of lowered personal standards, as people's perfectly natural desire to be noticed/approved of means they try to post their way up the popularity/respected member ladder.

There are a lot of techie tweaks that might unseal the echo chambers to some degree. But they all carry the risk of unintended consequences in terms of aiding The Lesser Spotted Troll and his cousin The Full Time Cyber Bully in non-SMOGs.

And besides, SM platforms don't want to unseal the echo chambers. Sealed echo chambers increase outrage levels, increased outrage levels means more clicks. From both those who share the outrage, and those who are outraged by the outrage.

We have see what works in terms of creating a brake on a SMOG. They need to be public, or they can't attract members/"awareness"/ funds. Which means those who disprove of their tone and content can see them. Comment upon them on other platforms. Register their disapproval of them. Find others who equally disapprove, which amplifies individual and group disapproval levels.

The same systems which allow SMOGs to flourish provide the platforms and linking up of Anti-That-SMOG sentiment. Which is what Tsunami-ed over the bows of the CA ship last night.

It is taking on water faster than they can bucket it out. I wouldn't be surprised if it sank with a hastily flicked switch from admin. Because the story that is CA has overtaken the story that is Charlie, and anybody could understand why the family wouldn't want that. And because the awareness/fundraising high water mark was probably hit some time ago, so its usefulness was probably over even before it became a massive PR liability.

In terms of avoidance, so it doesn't have to play out in the way it just did .... somebody could create a "nice digestible chunks" Corsera offering on "SM for awareness and fundraising", with case studies like CA, which would be useful illustration of points.

But the people who would sit through it and really consider the content are probably not the ones most prone to charging down the elephant trap ridden path of running a SM awareness/fund raising campaign with no experience, training, or hastily gathered expertise.

It is so easy to set up a group now. It used to be a real slog. And that slog opened your eyes to the potential for pit falls you hadn't considered. Not least cos you often had to go to techie forums to get techie help, where people would also be discussing the pitfalls of trying to herd cats with a taste for flaming pitchforks. So the "issues with membership" stuff came to your attention as part of the process of set up.

Not so much now. Click click you have your group. And because it all feels so easy and idiot proof, it lulls people into a false sense of security that any bugger can do it, and do it well.

I think if you could persuade The Oatmeal to do for the Dunning Kruger Effect what he did for the backfire effect in comic form (''tis fab, well worth a click) and there was a concerted effort to send both super mega viral that might help hit the human root of the issue.

I am very reactive. And massively impulsive. (.thank you ADHD for that "help" ). I am prone to the lure and symptoms of SMOGs. Both of those concepts above have acted like personal ballast for me. I go back and read about them quite regularly just to remind myself. I have kind of strapped them on my personal tool belt to try and get through life in a somewhat less "I'm a fuck up" fashion.

Given that (ADHD aside) I am pretty average, maybe they'd have much the same effect on most other people too. Perhaps them being more widely known and actively spread in digestible comic form (some of us have concentration issues, comic form is GOOD ! ) would help limit the number of people with such high levels of susceptibility to falling face first into whatever the current outrage is ?

Anyone seen muckypup?

If the Gard family are not happy with tuesdays court ruling, do they have the right of appeal again? They appealed to two courts last time so would they have those two appeal routes again on this new decision?

Jedbartletforpresident great post and wonderful explanation of how illness in the family can affect you. Hope your husband is doing well.
I'm torn about the Facebook group, in a way it would be good to know people in real life who's views I have agreed with and respected on this platform. I would hope that anything I am involved in would not descend into parent blaming, as I have great sympathy for them and believe that they have been drawn into a far bigger battle than they ever imagined.
It's hard to see how they can disengage now.
I've messaged a couple of you who I've recognised from the beginning, and am happy to be contacted, but would also prefer to keep the main discussion on here.
picks splinters from backside

0nline that's a great link to The Oatmeal, haven't seen it before. I might ask ds if he's seen it.

Perhaps muckypup is giving herself a break until Tuesday. I was trying to but have failed miserably. I hope these threads continue - there are a number of critical issues arising from this case and I agree the discussion here has been great. 0nline I really liked your last post - great food for thought.

To be fair to HQ there have not been "constant moderations and deletions". Throughout the 13 threads covering this topic they have deleted a handful of posts mainly written by posters who have allowed themselves to step over the line into personal offence (both taken and given). The vast majority of the content is reasoned, informative and questioning discussion and there's no reason why it can't remain like that. Anyone who wishes to screen shot and share social media posts can do so freely on fb and if that is their main focus perhaps it is better that they do so. Those of us who wish to stay focused on the legal, social and medical implications of this case can just carry on as we were. Just follow the rules and be respectful in how you phrase your contributions. It'd be a real shame to lose what has been a really interesting series of threads.

Loved the subtle digs about your superior intellect and focus there FlyingElbows

You have some good points there online and I thank you for such an informative post.
I think what is an important point to consider is does social class have a major role in this mob attitude?
Does the lack of critical thinking skills contribute?
Does the economic situation in the country contribute?
Because social media has meant more and more people are in effect more isolated from society than ever before can be a big factor.
No one writes letters anymore, easier to text or use social media.
Even telephone calls are diminishing and texts, instagrams, tweets are on the rise.
I am still old fashioned and like a letter, not the brown envelope type (smile). I still prefer to hear someone's voice rather than a text. I can tell a lot from a voice, I can tell nothing from a text. I can interpret that text, tweet, Instagram as something different to what was meant.
Rambling a bit but I think technology is contributing to the breakdown if society, to mass hysteria and mass mobbing. We have lost that personal touch and therefore, a large part if our humanity too IMO.

Friendlysnake I think it was an excellent post from FlyingElbows and spot on. I have followed all 14 threads and posted on a few, I have loved seeing the opinion of barristers, medics, scientists and parents who have gone through all kinds of experiences on these threads. I would so hate for them to be deleted or not continue into next week.

A FB chat would just be an echo chamber for sure as wouldn't be open, this is open and I have been interested in pretty much everyone's opinion right from the start.

Surely there is no need for FB, just keep the parent blaming (or c+p of any parent blaming posts from FB) to ourselves. I personally don't agree that the parents actions are beyond criticism but I don't own the site, and I suppose it isn't really in the spirit of a parent support website. I'm sure if it is just the facts of the case that are spoken about there shouldn't be any issues and the threads will continue.

Thanks for your kinds words - I didn't write my post at all to garner sympathy for our situation - just to shed light on how I can (in a tiny and totally incomparable way) understand why C&C aren't exactly perfectly controlling this whole situation every minute of every day. I really do appreciate your kind words for my DH however - thank you.

Thanks for that link online (and a brilliant post)! My batteries dying atm, but I will make a note of it to read later :)

online thanks for the oatmeal link. I will now have to go and research George Washington's teeth and put off playing with my new ice-cream maker a bit longer. (Yes, it did start to rain the minute it was delivered)

samesorrystory, I am not sure if my posts were read properly or just odd bits highlighted.

I thought that his/her post was a little bit sneery and implied that I hadn't contributed to or respected the medical/legal aspects.

As you can see, lots of people felt that the moderation is getting a bit heavy, but as I stated previously I have no appetite for setting up a FB group.

However, the previous group was not an 'echo chamber', it achieved far more than you are giving it credit for and was full of clever, compassionate people. It was started because the thread on MN was the echo chamber.

Now back to the case - I have a question which has been bothering me for the last couple of days...

I think I read somewhere (probably on here) that C&C's lawyer was complaining about the scan results being shared in court on Friday because they were confidential medical information and therefore shouldn't have been made public. Are there grounds for that complaint? Surely in a court case to determine the outcome of a medical case, the medical details NEED to be shared?

I think I was confused because (as I read it) the complaint came from the lawyer - not the family - and therefore shouldn't have been a simple mistake of not understanding the law?

Am I wrong in that?

Is his argument (if it is indeed his argument and I didn't just dream it was him saying it!) that the case should be tried in private or that medical info shouldn't be a part of it at all?

I'm confused!

Second that online great link!

Am confused too Jed.

I think the strengths of discussion on MN come from the fact that it's open to all. Closed FB groups don't do the same thing and in my experience can get quite extreme quite quickly.

The threats against GOSH are top of the radio news. As is a 'medical ethics expert' who stated that parents should always have the final say. I found it hard to believe that any HCP would say that; I wonder who it might be. i'll pay more attention next bulletin.

Jed, I think it was a huge shame (if true) that the court saw the results before the parents and surely there was no need for that.
As to whether the medical details should be public on the whole in English courts any document in open court is public as we don't want to be like places like China and North Korea where justice is in secret. It means of course that there are risks private things come out. In family court proceedings eg rich people getting divorced, abuse cases, child residence it is often in the interests of the children that there is confidentiality so there are certainly exceptions.

I am not sure of the law applicable therefore in this case but would imagine given the public interest in the case and how absolutely vital is it to know is the baby is thinking or whatever the right word is regarding brain function, that it would be in the public interest. The facts are the real things everyone needs here including the parents.

It is a horrible case for everyone on all sides. The villification of GOSH one of the world's best children's hospitals is dreadful too.

The right to life whatever that life might be like and whatever "life" means and who decides over it is the issue that grips people. Do we own and control our children or can the state decide? All those difficult cases - can a parent refuse a blood transfusion for a 4 year old for religions reasons in England (no). Can you abort a healthy baby at 10 weeks? (yes). etc etc

I found the whole scenario about the scan results odd and confusing.

Obviously the Judge needs to be aware of the results but I absolutely think C&C should have been made aware of them first. If the main trial is this coming Monday and Tuesday I don't see why the MRI results couldn't have been discussed with C&C over the weekend and then the Judge be informed on Monday. A huge part of the case rests on the MRI scan I imagine and so I don't think it's right that the first parents got to hear about the results not being promising was when it was announced to a room full of people.

I don't understand what Connie meant when she said, "We weren't supposed to read them that way" (or whatever she said) as it doesn't make sense. I couldn't tell if she'd meant to say, "We weren't supposed to hear about them that way" but it came out wrong - I don't know.

However, KG didn't actually give any specific details about the scan and just said it made for "sad reading" and she may have genuinely just thought that's what everyone was expecting anyway I.e she wasn't telling people something they didn't already know.

I have also read somewhere that Charlie had two MRI scans, one of his brain and one of his muscles - but that doesn't make sense either as you can't simply MRI scan every muscle. So who knows.

It will be interesting to see what facts actually come out during the Trial because at the moment everything is just so confusing.

I would assume that the medical evidence referred to, the scans, will be discussed in court as they are pertinent to the case. The judge asked for them. The parents did not like what the GOSH barrister said about the scans and said they had not seen the results. His medical condition has not been secret at all - otherwise how would anyone be discussing it?

Kangaroo- Regarding a further appeal, the parents do not have a "right" to appeal. There has to be a justifiable reason as set out by the Court of Appeal. The bar is quite high. My opinion is that the judge will try and make his judgement watertight and there will be no grounds for appeal.

Generally, when a case is of public interest, it is held in public. The parents have publicly raised funds and the profile of the case. A lot of the publicity is their choice.