To ask people to PLEASE not picket hospitals?

[SerfTerf]

Or consider any kind of direct action against a hospital because of decisions concerning any individual patient.

It's irresponsible.

I agree about the "baying mob" on Facebook. The ignorance of some of those commenting is just astounding. Emotional garbage arguments with wilful avoidance of the facts and an assumption that the medical and nursing staff have some underlying agenda of their own.
The whole story is tragic and my heart goes out to the parents but they are clearly struggling to accept what is going on and I don't think the baying mob are helping them to see through the fog. Poor parents.

I read Talkin's post as highlighting the point that taking an ill child to America isn't a guarantee of a cure - so supporting the argument that Charlie would not benefit from being taken there either.

If you read the story, that little girl WAS taken to America for treatment, but it didn't end well.

That's what I read..it gave hope and ended in heart ache in the end. Poor girl and parents

Yet if that story was posted you know bits of it would be picked out..and others ignored

If you read the story, that little girl WAS taken to America for treatment, but it didn't end well.

She lived for another year.

Jesus Mary and Joseph, this is what Mr Justice Francis said in the judgement made in April -

It seemed, at the outset of this hearing, that there might have been a lone voice in the USA that was offering what has been described in some reports as "pioneering treatment". Understandably, Charlie's parents have grasped that possibility, they have done all that they could possibly have done, they have very publicly raised funds. What parents would not do the same? But I have to say, having heard the evidence, that this case has never been about affordability, but about whether there is anything to be done for Charlie. At one stage GOSH got as far as deciding to apply for ethical permission to attempt nucleoside therapy, a treatment that has never been used on patients with this form of MDDS. But by the time that decision had been made, Charlie's condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible, that treatment was potentially painful but incapable of achieving anything positive for him.

What can't people understand about this??!?!?! There is no path that GOSH hasn't tried to help this family, and for what reason - public slandering and stirring mob hate. It's an absolute disgrace.

But at what cost? And I'm not talking about money.

Talkin I remember the Laura Davies case and her parents received a huge amount of criticism for putting her through that operation and the surgeon himself said that, in hindsight, it was wrong as it prolonged her life briefly but that she suffered a huge amount during that time and that it would have been kinder to not have gone ahead with it.

I apologise for not returning to the thread today. It was a very busy day.

To those who commented earlier, it wasn't intended as a TAAT, and I don't think it is.

It was meant specifically in defence of hospitals, HCPs and particularly GOSH.

The good news is OP most people agree

None of us will be picketing

Yes

MN as a haven of sanity.

Poor Laura Davies' American treatment and death was 25 years ago now. A lifetime in terms of medical developments and practice. Her treatment was a transplant. Unthinkable that anyone would travel across the Atlantic to secure a liver transplant for their child now.

I'm horrified by some of the comments directed at the hospital and its staff, on the GOSH Facebook page and on one of the 'Charlie's Army' pages.
I'm even more horrified to realise the lack of critical thinking skills displayed on those pages. Baying mob indeed.

I normally back away swiftly from threads like this, because you can't argue with stupid....

But seriously any fucker threatening to picket GOSH, there are no words

One or two points as regards the 2 links posted to treatments, one was for Leukaemia, one re: post-transplant treatment, comparing either of them to Infantile Onset Encephalomyopathy Mitochondrial DNA Depletion Syndrome is like comparing Guinea pigs & Giraffes and saying they both need the same treatment because their names both start with a G. . . .
Infantile Onset Encephalomyopathy Mitochondrial DNA Depletion Syndrome is at a genetic level

As regards the US doctor, they were treating a different variant of the disease and have had so far only 18 patients in their trial. In the UK we don't even allow makeup on the market in that small a sample size!

As for why not try it and see; ethically we can't do that see: Tuskegee syphilis experiment; HeLa cell line, and a bit further back Nuremberg.

I don’t dispute that some medical teams can be high handed, but be aware that while parents and family can say all they want to the media, medical staff CAN NOT respond. Not so long ago Hospital staff used to have to sign the Official Secrets Act. (and I recently found out that ATOS now have too..)

I have worked in various disciplines within nursing; the one thing I will comment on, on a personal level is so many people seem to believe that we are at a point where medicine can cure all. We wish we could, we want to, but right here right now….

Hopefully at some point in the future ‘we’ can treat children with these genetic issues, but if money has to be spent protecting staff doing their job, it takes away from research.

I must admit, before seeing this thread, i hadn't properly followed the case so didn't know what it was about.
Done a little bit of searching now on seeing these posts though as was curious.
It sounds like a tragically sad case all round. Of course the parents are going to be devastated and want to do everything they can to save their baby.
If there's no way to save, and even the American doctors have said it's not possible (which is what I read) then what are you supposed to do?
I get the supporters are coming from a good place and wanting to help. How are you helping though if there's people going on to say they'll picket/posting details of medical stuff online/exposing staff etc?
That's just crazy. Just back off and away from the internet as you're doing more harm than good.
If the internet warriors are doing all that shit, is there any wonder they can't release him from hospital just in case?!
They seem to be harming, not helping.

I think the driver is blame, Tequila. There must always be SOMEONE to blame for everything that goes wrong. Systemic breakdowns and impossible situations don't wash with people like these, they always have to hang blame on a person. I predict they will be calling for the head of GOSH to resign next.

You can't argue with stupid. And people like this are the thickest of the thick troll types who care not one jot for the parents of the child they just like to cause trouble.

I saw that post with Charlie covered in fairy lights yesterday. Someone on my friends list had shared it. I followed the link back and it was posted on the personal page of a woman whose whole (public) Facebook page is about her 4 children who have been removed from her care and her rants against social services. All her other posts have 20-30 likes and the one about Charlie somehow has over 2k. I was astounded at how uncritical people can be and how willing to virtue signal without even a cursory look at what they are sharing and what people's motivation may be to spread this stuff on social media.

If you read the story, that little girl WAS taken to America for treatment, but it didn't end well.

She lived for another year

A year during which her health briefly improved, and then the anti rejection drugs had to be stopped due to massive side effects, before those organs failed. Then she returned to the States for a liver, small bowel, large bowel, stomach, pancreas and kidney transplant. She never recovered from the surgery.

That's what people are saying about "can" being not the same as "should". Laura Davies' legacy has been that children should not be taken abroad for risky and/or futile interventions that the NHS refuse to consider. I daresay at the time her parents were assured that it was "worth a try" and "at least they would know they did everything they could".

I think the parallels with Charlie Gard are quite clear, although this time common sense has prevailed.

You make an excellent point, Roly - and in the meantime I hope that Charlie's poor mum and dad are able to have a peaceful time with him over the weekend. Even if this only does a tiny bit to help them in the difficult days ahead, that "bit" might just make a difference

I do, however, also hope that it doesn't turn into "just a few more days", then "another week / another month" or whatever. It seems to me that would help nobody, but of course that's for another day ...

Whenever stories come up like Charlie Gard I track down the story of poor Laura Davies.
I remember the doctors on the TV talking about trying out the most complex operation then available on the poor child - who had been dragged to Pittsburgh with her parents
and died in hospital away from friends and family
because of an intervention too far.

Medical science is amazing
but "can" and "should are very, very different things.

Charlie Gard never had a chance. Ever.
There are multiple Nobel prizes in the next couple of decades for those who work out how to cure mitochondrial diseases.
Currently "three parent babies" are the only reliable approach.

FFS, you've got to be a special kind of stupid to picket GOSH.

It reminds me of the supporters of that couple who set up a Go Fund Me when their son was born prematurely overseas and then, as far as I know, kept the bulk of the cash instead of donating it to Ronald McDonald House like they said they would. Anyone questioning what they'd be doing with the money was met with a torrent of abuse and Mumsnet was infested by huns who jumped on any thread that was critical of the couple.

Or any other hospital.

It reminds me of the supporters of that couple who set up a Go Fund Me when their son was born prematurely overseas and then, as far as I know, kept the bulk of the cash instead of donating it to Ronald McDonald House like they said they would.

Baby Dax.

That thread was the reason I rejoined MN back in 2015, I was incensed at the way they were tugging on heart strings to get cash. The insurance bowed to all the bad publicity and paid out from what I remember (even though they didn't have to) yet there were shedloads of donations from the public.

One of the posts (from the premature baby) was asking for money because "Daddy needs new pants"

Since Daddy had shelled out for first class tickets to New York plus a luxury hotel, I'm sure he could afford to purchase his own pants! And IIRC it was "Daddy needs new panties" 😖