Charlie Gard Case 5

[LovelyBath77]

A new thread to follow on from the others about this case.

FGS Nicky no they don't! Unlike you, I am fully aware of Sussex Police complaints process.

It really is annoying when someone comes on and claims to speak for an entire breadth of police forces in the UK.

@zeezeek great post, very informative on the process of testing a new treatment- I hadn't really considered just how much data would have to be collected beforehand to ascertain whether it would be effective from mice to use in Charlie's condition.

I do agree with your views in the second post too.
The irony of Connie Yates appearing at a protest outside GOSH, a radio broadcast and three separate TV shows saying "We are with Charlie all the time " isn't lost on me either.

All public sector jobs have very clear social media policies for very good reasons.

All staff know this.

I understand that people feel very invested in this case but is it really necessary to personally track down the relevant person in an HR department so you can get someone sacked?

The time I reported a nurse to the hospital I didnt need to track down the relevant person in HR, the hospital did it for me and they phoned me back. This particular nurse was on Facebook moaning about immigrants and people on benefits having access to NHS care. She was ranting away to all and sundry who would listen to her, on a BBC news page.

I'm not sorry for what I did. I hope she got a massive dressing down and has learnt the error of her ways. I use that hospital frequently, and am on disability benefits. I don't want people like her treating me.

is it possible for the Judge to order a news blackout?

This is a fundamental issue nowadays - there is no way to enforce a social media blackout. A judge can say what they like but people will still post on social media whatever the hell they want.

MirandaWest it is all odd, in that no logical thinking whatsoever is present on the CA pages

I reported a care home manager who was 'liking' animal abuse videos too.

What a snitch I am.

I think the judge can do that Trampire. They can be used to 'protect privacy, prevent harm to suspects, prisoners, witnesses, victims, or to protect national security.' according to Wikipedia.

So if it's in Charlies interest to keep the details of when they will move to palliative care (assuming that's the judgement given) private then the Judge can order that. I assume there's more to it in deciding whether to order that though, there must be more conditions around an order like that and Charlies case may not qualify.

rabbit I did mention the police service in my own area. I didnt proclaim to speak for Britain wide. You were wrong in your own statement that members of police staff are not under the misconduct umbrella of professional standards.

I have no idea what force the person works for so can't comment or look it up.

I know of several people who have lost their job due to breaching social media policies. They are spelt out in words of one syllable to all new starts and if you are silly enough to breach them then you deserve everything you get imo.

I was wondering if the judge could order for the CA page to be shut down for now? Given that the family are running it.

Today 13:52 rabbitnothare

I reported a care home manager who was 'liking' animal abuse videos too.

What a snitch I am.

Totally the right thing to do.

MrGrumpy01 - it comes with the massive caveat that my knowledge is about 15 years out of date!

Puzzledandpissedoff - as much as it pains me to accuse my fellow scientists of being money grabbing - yes, the potential to get a large amount of research funding off the back of this could be a major factor in their willingness to help this cause. The reality is that before Charlie only 15 people had been born with this particular mutation, so the need to find a treatment is less urgent than for eg neuroblastoma (or any other paediatric cancer). The days of scientists doing the work for nothing other than to find answers to questions was over a long, long time ago. It is a business now and I'm afraid that something that affects such a small number of people isn't economically viable for either academic departments or pharmaceutical companies.

Nicknacky I really think that you should leave it now, I was clearly speaking for Sussex and if you were unaware of the comment that was being referred to, I am surprised that you felt so qualified to speak.

Frankly, you have no idea what everyone else on here does for a living either.

anyon whose stupid enough to publicly comment such vitriol have only thmselves to blame for the consequences

fairy I'm sorry for your experience, and in your position I'd feel exactly the same. Obviously I think making those sorts of comments is stupid and despicable. Your advice to another poster was to phone and ask to get put through to HR though.

I can see I'm in a minority here but I just think it's getting way too personal on all sides.

Someone earlier in the thread called the parents barbaric, someone else said the way they look and are dressed shows they're not really grieving properly for their son. These sorts of comments are as bad as the CA stuff IMHO.

My son joined a research team using mice at his uni a couple of years ago for the research year of his medical degree/ training. The project spanned well over the single academic year that he joined for (and was stalled for the entire summer because the mice declined to breed).

rabbit I will continue commenting if I wish to. Feel free to post a link? I have looked in the fb but it's difficult to find one particular post.

Obviously I have no idea what anyone does for a living, have I said I do? And does the member of police staff work for Sussex?

where's the Queen because she 'owns' the country and is in charge of everything

They've forgotten that the Queen is a slag...

Let's not snipe at each other

Thanks for people who answered my news blackout question.

I was thinking it was a shot in the dark. I think everyone's a bit concerned about the temperature of this whole case and what reaction it may cause after Thursday.

NickNacky, I believe the HCP in question posted that the QC for GOSH should have "a hammer in her face"

BabyHamster I think that the comments you highlighted are a handful out of five threads. I think each thread is 1000 posts? So nearly five thousand comments and a previous poster trawled through all of them and came up with about ten comments I think were not probably as nice as they could be.

Have you been on the CA page? I wouldn't think that they are at all comparable.

I think that the evidence has to be before the judge by 2pm doesn't it?

I wonder if there will be reporting.

The toxicology studies alone would take the best part of 2 years to complete (and in this country alone it can take many months to get all the regulatory approvals to run the study in the first place). For that reason mice would not be used is such a study as they don't have a long enough life cycle - rats would be used instead). The toxicology studies aim to get the right dose of the drug so it itself doesn't prove toxic and also what impact on the other organs the drug may have (no point in a drug curing kidney disease when it causes fatal liver disease for example).

It is not a quick process.

"All the 'posed' photographs were copyright of Featureworld. The parents didn't look relaxed and happy in any of them."

I would say that's normal, under the circumstances...

I do think C&C have probably taken very poor advice about whether / how to deal with the media. Including social media obviously!

Taking a break from reading CA FB and reporting. Wishing there was a button to report stupid.
Also wondering if C & C actually believe and support all this bs, and worse, that is posted on their behalf.

tramp Thanks but it was the angry face icon on the other little girls story we were talking about. No cant find it on the fb as there is so much crap on it!

Fully agree with her health authority knowing about that little gem!