Charlie Gard 17 re started

[muckypup73]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

I imagine a lot of the CA members to be like Karen Matthews friend Julie, certainly how she was depicted in the programme.

I completely agree. It's like an obsession for them to be the ones to rescue Charlie. They're spending hours ringing around hospitals, tweeting and emailing doctors, harassing people, reporting how they haven't been able to stop crying etc and it all just seems very odd.

I've always said that I do think they're genuinely helping but it's now overstepped the line into something really else completely.

I do wonder what C&C make of it all.

What I am struggling to comprehend today is that they've appealed for medical staff including Doctors to come forward and help. So they are happy to put their dying son's life into the hands of complete strangers (as they would be in a hospice too), rather than let the Doctors and Nurses who know Charlie and his medical needs in their entirety help him get a peaceful and painless end. What part of that is in Charlie's best interests? I am praying that's what the Judge will pick up on this afternoon .

From Sky news website:
Dr Hirano has released a statement, saying: "I became involved in Charlie's case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether and experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie's condition.
"As I disclosed in court on 13 July, I have relinquished and have no financial interest in the treatment being developed for Charlie's condition.
"Unfortunately, a MRI scan of Charlie's muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment."

news.sky.com/story/us-doctor-dr-michio-hirano-speaks-out-in-charlie-gard-case-10962056

no, it's still up there. I imagine that GOSH has their social media team all over it, monitoring etc? I feel so sorry for that person named.

I can't help but think that most of CA wouldn't give this a second thought if SM wasn't available. I doubt very much they'd bother if they had to sit down with pen and paper and write to all these doctors. SM makes it so easy for people to dip in and out of situations. I wonder how many will continue to 'support' C&C when it's all over ?

Exactly @JaneEyre70

How they must hate GOSH to be considering putting their fragile little baby into such a situation.

www.theguardian.com/commentisfree/2017/jul/26/charlie-gard-health-service-nhs-failure
Interesting article

It's probably been mentioned loads of times, so apologies if it has, but don't C&C live on the second floor of their flat? How on earth is that equipment going to fit in a small lift? We used to live in a flat, the lifts were not big and they had maximum load weight..in fact some low rise flats don't even have lifts.

What normally happens in GOSH in this situation. Do they work closely with a hospice or do children go home.

A PP on a previous thread who is involved in this did a great detailed post on this that I couldn't even begin to re-create, but essentially:

It's usually facilitated if it can be
HOWEVER
The transfer team remove all organ support shortly after arriving at the home/hospice, within an hour! then the family are left with either a palliative care team (who don't do ITU stuff) if dealth isn't immediate after ITU equipment is removed, or a cold cot

PICU is not relocated to the home

The smaller "portable" equipment CA are posting on the page would probably get you between the operating theatre and ITU, I don't think it'ld keep you alive round the clock for a week!

I hope Judge Francis rules for a media blackout this afternoon. I think Charlie deserves privacy in his final days. Whatever the parents may wish.

Can he enforce this on the parents though? Can he legally stop them from walking out of Court and telling everyone what the outcome was?

jane yes I imagine they would prefer strangers rather than those they are currently at loggerheads with. I would have greeted strangers with open arms.

Without wishing to restart discussion on the ethics of this proposal at the moment, where did the idea that the parents want to pay for care privately themselves and then bill the NHS for it come from?

I hope someone will be willing to just provide a factual answer, in view of what got the last threads deleted (rightly or wrongly). I think we probably all know what we think of the idea so it doesn't need to be said again. Would be grateful for the information if anyone would be willing.

I think the Judge has the power if it's not in Charlie's best interest and in view of the continued threats to GOSH and staff.

A reasoned comment by a CA member [on the ''find a doctor'' post] mentioned the impracticalities of taking Charlie home, and was promptly banned .

None so blind as those who refuse to see reason.
It appears that the more rational explanations are given , the more blinkered CA members become.

Have the parents requested transfer to another PICU before because of breakdown in communication or is it just for end of care

Afternoon all. I have read that the family will be going back to court at 2pm today, but also read 1pm. Do we know when it is?

I've just read the GOSH position statement. How very sad for all involved.

maryz I suspect you are right that maybe the staff aren't supportive of them. There are little ways it can show up even if the staff are trying for it not to. And that can cause tension.

It is a mess Maryz and at the bottom of it is a poor little boy , whose dignity and needs seem to have been pushed aside by many.

I don't understand whats happening now. Surely its a relatively simple thing to work out whether the ventilator fits or not?

Have the parents requested transfer to another PICU before because of breakdown in communication or is it just for end of care

I think they did request going to another hospital as GOSH has said it tried to find alternative ITU care but that no other hospital would accept Charlie.

I think the whole issue is that C&C simply don't want Charlie to die on GOSH grounds.

It has always been 2pm cjt in the past so suspect the same today. Think courts have lunch between 1pm-2pm.

I don't understand whats happening now. Surely its a relatively simple thing to work out whether the ventilator fits or not?

It doesn't. But C&C and CA won't accept it.