Charlie Gard Case 5

[LovelyBath77]

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

Is the Aus one threatening too? As could be worth reporting it. It seems the content of these groups is not in like with FB rules anyway, so hopefully we can get them taken down.

I can't see any other outcome on thursday than the judge upholding his original decision and i wouldn't be surprised if a time and date was given for charlie to be allowed to slip away.

I thought so too TheWeeWitch.

Thanks for links re reporting pages. Will do?

Sorry, rogue question mark there.
I will do.

I've just had a massive and distressing argument with someone I've known for years, who took objection to my linking on facebook to Zoe William's Guardian piece on this case and saying that I hoped Charlie's release would come soon. Apparently I am unfit to be a mother as I would obviously let doctors kill my children rather than give them a chance at life. This woman wants to be a nurse, she talks a lot about it, she works as a HCA at the moment. She genuinely believes Charlie should be made to continue in this awful state, with no prospect of ever achieving anything close to quality of life, to be used as a bloody medical experiment, because "there's always hope". Hope? The only hope there is for Charlie is the hope of an end to his suffering. Charlie's parents I have immense sympathy for, but people like this woman disgust me.

They are batshit, alltouchedout. they don't; care about others, just see any other views as negative to their own cause. Horrible. Sorry to hear you had this happen.

Yes there is very little support for families in hospital although GOSH ( we are not there at the moment ) offer lots of support.
You get 7 pound a day towards a meal from all the local eating places per person.
So they would never go hungry at GOSH as you can get a lovely hot meal in the lagoon for less than that x

Someone on my FB friends list has started sharing a pic with statements below - things like 'no sign of illness' etc from CA. Was tempted to comment, but feel best just to not get involved on there! I'm surprised she would have done that though.

I hope you are getting all the benefits such as PIP / Carer's Lonely mummy - glad to hear about the good food!

sorry all, see this was a long term friend? Yes I'm surprised at my friend too...

Medical records don't belong to the patient or the parents.

Like everyone else, his parents will need to apply in writing to access his medical records and the hospital are allowed to remove anything that may bring harm to Charlie.

I think the groups all feed off each other.... there will be a CA Europe one before long

Lonely, for you and your daughter.

Usually if you request records the records office at the hospitals simply copies the lot and gives it to you. So should not be need to have people keep going back to ask for them.

But the notes will be being added to all the time, every time they do an obs or give a drug.

ETA: If the hospital feels that releasing his notes would break the confidentiality afforded to him, they can deny the request as well.

In these circumstances, I personally feel that Charlie's right to confidentiality is still important and his notes should not be shared with the family due to the likelihood they will be plastered all over the CA Facebook page.

There are other means to share his notes with medical professionals without the public needing to see them all. His parents have already demonstrated their willingness to share details of his personal and private medical investigations on social media.

You can't request your medical records and expect them the next day. I've got all mine, going back years, because I've got on going health problems and DH is in the RAF so we mice about. They've got something like 50 days to get them to you, and you have to pay.

You can't just ask the nurses/doctors on the ward for them. There's a procedure to follow.

Not RTFT sorry but if you have had your personal details used without consent such as via a petition you can contact the ICO information commissioners office and ask for advice. They are kind of like the regulator around the data protection act. (I'm not a lawyer sorry) but they would be a good start and can advise in this area.

It is likely that Charlie will pass away this week and my hope really is that someone/anyone is able to help the parents cope with this in the right way. Whipping up another shitstorm and protesting about it will help absolutely nobody. They need to be counselled to grieve privately and properly.

I suspect this won't happen though. There will be book deals and television appearances and people out to exploit them further. The parents do not strike me as being capable of knowing how to act in their own best interests.

"Usually if you request records the records office at the hospitals simply copies the lot and gives it to you"

Only if there is no harm to you though. They won't release medical records if they think it is going to cause a detrimental situation (including breech of confidentiality) to your health or wellbeing.

Placemarking

Thanks for the new thread.

I'm not surprised about Facebook being slow or refusing to take down posts. As I said on an earlier thread, I've reported things to them in the past (including pictures of a woman having sex with a horse and a decapitated corpse) only to be told that they don't violate the guidelines. WTAF?! Needless to say I deleted the "Friends" that had put those pictures up.

As you say a new group can just open up, too.

The ba need to be convinced to post lots of bfing pictures in relation to Nucleosides, and Connies claims she was a forced to stop. This will piss fb off, they don't like bfing pictures.

I just received a lovely reply from GOSH on Facebook thanking me for the message of support I sent, thank you to these threads for the suggestion (apologies, I can't remember which poster suggested it first). I feel our messages are genuinely appreciated.