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Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

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Venusflytwat · 14/07/2017 20:55

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:



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
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muckypup73 · 14/07/2017 20:55

Thanks Venus for providing all this info x


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

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muckypup73 · 14/07/2017 20:55

x post, see I was trying lol

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rabbitnothare · 14/07/2017 20:57

LogicalPsycho it is open to viewing by anyone without joining.

You can also comment on other people's posts on there.

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Venusflytwat · 14/07/2017 20:58

Thanks Mucky. I think I'll try and stay away from it for the weekend but I really just wanted the facts laid out at the start :)

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SouthWestmom · 14/07/2017 21:00

I feel so sorry for the family who want the Charlie they had and cant accept the only Charlie is the Charlie they have. I'm sure they are convinced there is a magic key to fix him.

I wonder at what point the extra time turned into GOSH realising a JR was in the offing.

I cannot believe how this had panned out - very scary in terms of any precedents for similar withdrawal of care situations.

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muckypup73 · 14/07/2017 21:01

Venusflytwat, I will be doing after this evening, probably till tomorow evening lol

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muckypup73 · 14/07/2017 21:01

And thanks for the info Venus, its a good way to start x

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LogicalPsycho · 14/07/2017 21:05

Thanks rabbitnothare I'm great with Twitter but always get have problems with Facebook! I've removed myself now.

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muckypup73 · 14/07/2017 21:06

Noeuf, I seriously do not think it will cometo that, I think either charlie will die natrually, or the judge who is very sensible will say ok enough is enough turn the machine off, Just honestly think how much it would cost the Nhs, if this happened everytime? there is no way and based on the flimsy evidence, or so called evidence it just is not going to happen.

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DarthMaiden · 14/07/2017 21:06

Thanks Mucky

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muckypup73 · 14/07/2017 21:08

LogicalPsycho, see I always have problems with twitter lol, I absolutely hate the fact you cannot have a full conversations and have to fart about with hash tags and all that shite, giveme something simple anyday lol

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ItsNachoCheese · 14/07/2017 21:08

Ive found i have a few fb friends in the barmy army. One is someone ive been friends with for years and shes posted lots of ca posts. Im quite surprised at her but i know she can post and share what she likes as can i

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randomer · 14/07/2017 21:10

Dreadfully sad but children dying every second

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muckypup73 · 14/07/2017 21:10

DarthMaiden, yw x

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LogicalPsycho · 14/07/2017 21:11

Mucky I think the best and the worst thing about Twitter is the 140 character limit.
It's great for accessing lots of thoughts from different sources quickly, but it's also a giant PITA to try and express all your thoughts in one sentence!

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Butteredparsnip1ps · 14/07/2017 21:12

I've seen a few posts asking me to share mawkish CA propaganda. I've ignored them. As the saying goes, you can't argue with stupid

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SouthWestmom · 14/07/2017 21:13

Mucky I mean the returns to court. If this family can prolong the process for a rare incurable condition, what is to stop anyone else finding treatments on the net for more common conditions and insisting they are considered?

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FantasyAndHope · 14/07/2017 21:14

Does anyone know why they won't allow the mri to be done?
I personally thought they won't because it might show more brain damage which will weaken the gards case.

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Nquartz · 14/07/2017 21:14

I'm so relieved that I haven't seen any CA BS on my Facebook feed.

Logical good to have you back, hope you're on Flowers

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Nquartz · 14/07/2017 21:15

OK obvs

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martinsgirl · 14/07/2017 21:16

Delinking to say thanks for the updates today. Have been trying to follow them while at work today so have appreciated all the posts.

I've read through the court judgements and statement from GOSH and I cannot believe this is still going on. My heart breaks every time I think of that poor little baby unable to even cry.

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Writerwannabe83 · 14/07/2017 21:18

I've no doubt some will feel it's crucial that the parents shouldn't be "upset or angered" ... whereas others of us believe that what really matters is Charlie and what's best for him

I suppose as a nurse it's harder because we've generally built up a relationship of trust with the parents, gotten to know them and they know us etc and so the minute we say something negative in the meeting we know that the relationship is effectively over because we know the parents will never trust us again and then it's very hard to work with them. In general I think parents see nurses as their allies so if we suddenly turn around and say we have concerns of some kind we then become the enemy.

I think it's much easier for the doctors to just say that they want to say because they have no personal relationships with the parents whereas the nurses and the health visitors in particular I think find it hard to speak out honestly. Obviously out of the parents earshot we then share our concerns and speak honestly but it's so hard finding that fine line between saying what needs to be said and not breaking down relations with the families.

I can't even imagine how emotionally drained the PICU nurses must be working in what will be such an awful atmosphere.

I would hope that in Charlie's meeting the doctors do speak openly but I still worry that to some degree they will soften their true views because of how emotionally distressed Connie will be.

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Lightlovelife · 14/07/2017 21:19

It isn't confined to medicine
The world of special needs and disability is also full of people wanting expensive treatments or interventions with few known benefits ( I have a son with Aspergers and a daughter with MS).

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muckypup73 · 14/07/2017 21:20

FantasyAndHope, now why do the parents not want an Mri done????? because it will prove the full extent of how Charlie is.

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