Charlie Gard 18

[cjt110]

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.

@JoshuaRozenberg
2m
Gard: Court now adjourned to await arrival of the family’s specialist doctor.

As much as I am hoping that JF will make judgment today, and order that Charlie is taken to a hospice to pass, I am also feeling sorry for the next baby or child on the waiting list for that hospice bed that may never get the chance to use it if this gets prolonged further.

TBH, my only experience of a hospice is in regard to adult patients, but their beds have a waiting list and each person on that waiting list will be on very limited time.

I don't begrudge Charlie a hospice bed - of course I don't, but I would hate for him to be taken there and then find that the case was delayed/prolonged even more. It would be unfair to more than just Charlie.

Although I guess the same could be said of his GOSH PICU bed .

Thanks BoffinMum. Will look into this .

I went to twitter, I'm retreating back here to posts which contain intelligence and sense, it's too depressing over there

Okay, according to Vincent McAviney, the doctor says he can do the care 'at home'. THe home versus hospice matter aside, I though the consensus on the deleted thread was that enough qualified nursers AND a suitable doctor on-call would be sufficient (as well as equipment etc). I presume hospice suitable licensed for all that, but one retired doctor doing a week-long shift? Unless there is a whole team of retired doctors planning to rotate, can this be agreed today and all credentials checked as it will need to be if GOSH are to release Charlie into someone else's care? OR is this just going to be more delays, more checks, more adjournments, the hospice turns round and says no can do, the ventilator firm has delivery problems and so on and so on............

As someone else said on the deleted thread, this seems to be someone attempting to set up an ITU bed in a hospice by email at short notice. As opposed to what the hospice agreed to which was an experienced team with their equipment doing what they have dome many times before, which is tried, tested and SAFE as they can make it. Does anyone know BTW how long it takes to set up a new ventilator 'out of the box'? Given delivery and technicians and usual issues with any new piece of kit, and if they get a week, I think that would easily stretch to the end of next week and hence his birthday.

AFAIK they are trying to get a team to do something that has never been done before in a UK hospice?

This is horrendous

Oh dear, Chris Gard is now tweeting on CGF's thread.

Ellie I've been back through all the tweets, think it must have been deleted, perhaps wasn't meant to be reported on?

I have judge crush too, Fair.

In a previous life I was alawyer working on some complicated medical cases, and I think he has bent over backwards to be as measured and as fair as he can.

@JoshuaRozenberg
0s
Gard: hearing still adjourned. Not known whether the parents’ new medical expert has yet arrived for discussions with their lawyers

I've only worked in adult hospices however they have staff physically there in the day. Then the consultants/registrars/staff grade doctors will operate a NROC (non residential on call) Rota where they are called in if there is a problem. Often those on call are also on call for the district nurses and pall care nurses in the community overnight and one of my colleagues is also on call for his hospice, the community and the oncology hospital too when he is on call.

saucery

They are fixed it the "belief' that he doesn't experience pain or distress. I said this on the thread before - how can they be so sure? How can they take that chance?

Also agree judge has done extraordinarily well so far.

Justfrorthis99 Have bookmarked for good read later. Many thanks for link.

Maybe Millie

Maybe Connie can't bear to stop and actually sit by him.

If she's not ready to let him go being in court must feel like she's still fighting. If she's convinced herself (against medical evidence) that Charlie's not in pain then she can carry on and stop the inevitable.

Sadly poor Charlie is the victim here.

Brilliant, justforthis! I've shared, and it's the first time I've shared anything CG related on fb so I'm... 😬

Justforthis

Excellent

I know, Yoda. The cognitive dissonance required to be able to do that and yet say he can enjoy tickles and watch an iPad is just mystifying.

"if the aim is to get away from GOSH then why are they asking for a plan involving GOSH stafff on their days off?"

Presumably this means that they haven't fallen out with every individual there. But want to get away from the institution.

If Charlie is in unbearable pain, the decision would surely be more clear cut. It seems that no-one can really tell, and that the pain management is sufficient - no urgent order has been sought in those grounds. Pain management doesn't seem the difficulty with the possible hospice move.

Boffin a lot of doctors in the US, and practitioners in the U.K., advocate bee sting therapy for the illness I have.
There are also other questionable practices including drinking a magic elixir which is basically diluted bleach. It has a name which I can't remember but mm is possibly part of it.
Believe me I know, that if I wanted to sell everything I own and go to the US, I would have no problem getting as many different treatments as I wanted until my money ran out. Which would not take long.
That is not to say there are not practitioners offering similar treatments here, but they are more closely regulated.

identifies how can you be sure some is not in pain/distress but also believe they enjoy tickles and watching an i-pad? I pray to the gods I believe in that poor Charlie is beyond any pain.

Bloomin' good article Justforthis