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.

MissHavisham I think that your suggestion is a very good idea.

I don't believe Charlie feels anything from his parents. So where he is matters little to
him, sadly. However I too think GOSH should be relieved from having to care for him now and they found a hospice. The issues surrounding moving to the hospice and final care there is why the parents don't want that. I cannot understand why they would want just anyone caring for him but they seem to have such a broken relationship with GOSH it seems better to me if GOSH staff are released from their final duty. I don't agree he should go home though. I think the Judge said hospital or hospice and I don't think he will be persuaded against this.

I can see why they'd want him home. I can see why they'd rage. Poor buggers. I do too tunnocks

I don't think it's better to go to the house hospice as:

1. The transfer is difficult and traumatic. Not in Charlie's best interests most importantly

1. It's too disruptive to other patients and parents

1. It is - sadly - easier for the police (god forbid) to attend discreetly at the hospital if needs.

1. The extubation has to happen really fairly quickly on arriving at the hospice and I think that will be very traumatic for the parents and further add to their distress.

Builders from Bedfont offering to take wall down. CA

But that would mean having a sick baby, and an ICU team on a beeping building site

CA have gone crazy tweeting any doctor they can find, posting links to their websites, pictures of anyone that works in palliative care. They are contacting doctors all over the world looking for someone to take on Charlie so he can go home.

Utter madness and actually unpleasant.

I only found the new threads last night and yesterday had found myself thinking about Charlie and his parents and them spending their last moments together at GOSH. I am astonished at this new turn of events, it's just nuts.

The thing is I think Connie and Chris are just looking for something they can control. The guilt they must feel for effectively 'giving' Charlie this disease must be overwhelming, and from the time his illness started to become visible, his deterioration was rapid and uncontrollable. His parents desperately tried what they could to stop this, but they couldn't, they had no control over any of it and now I guess they are just trying to have ownership of this one last aspect of his life.

I don't know what their wider family are thinking - maybe they are desperately telling them to stop, maybe they are egging them on? C and C have been horrifically exploited by some very unsavoury types though through all of this. But they have to let go. As someone else said, Charlie is not a doll through which they can play out their fantasy of being 'a normal family'.

I have never lost a child and have no idea about any of it. But they had met him go a few months ago and begun their grieving process, surely that would still be preferable to the immense stress and trauma this shit show must be causing? And what about when Charlie has gone and they no longer have his 'fight' to focus on to take their mind off of the inevitable?

That poor family I hope Charlie gets his peace soon.

This is a bit of social commentary really.

One of my colleagues on a different but similar research project used to work with terminally ill children about 30+ years ago and he mentioned this morning that he had a significant number of emails from random people asking if he could assist in Charlie being taken home. I asked what the significant number was and he said stopped counting at 250.

The problem with staying at GOSH will be the relationship which has broken down. I totally agree Charlie's interests come first but what this is may be difficult to determine. The Judge has ruled in the hospice so he, at the moment, thinks it could be suitable for Charlie. He may be persuaded otherwise of course.

I think that basically GOSH as a premises needs to be turned into the hospice. So as per DH's suggestion upthread that ward space is found well away from PICU and a change of personnel
basically complying with a court order. Parents can bring in cot etc if that is easier for them for a transfer into that.

When you examine the issues with GOSH, it seems to be with the personnel, not the premises or location.

The house is absolutely out of the question - absent the issues with stairs etc - it's not legal to set up an ITU in a house. It shouldn't even merit anymore discussion.

The reason the parents seem to want the hospice is to "escape" from personnel and the surrounding of the PICU . It's easier and better to remove the personnel and decamp to another bit of the hospital than go to the hospice

i did say gentle criticism - some of the stuff in the last thread was quite heated.

I do think some of what their are doing is wrong, i am think they will realise that in the months / years to come. But things like questioning their sanity is not helpful.

There does have to be some rules on these forum or else it becomes like twitter and full of trolls racing to say the most vile things they can. In the eyes of MN they comments have strayed into that territory so they have to protect their site.

If anyone's interested. Vanessa Feltz will be discussing the right to die at home on her show on BBC radio London after 9 am. 94.9 FM.

It's usually a well balanced show and not the shrieking of LBC. Often have experts on to discuss etc.

NellieBuff..the internet..had this case happened 20 yrs ago, it would have never reached the ears/eyes of the UK never mind the World.

The net is a game-changer / double edged sword.

Problem is random members of CA are contacting all sorts of organisations trying to find people to support Charlie going home. Almost all of which actually have no idea what Charlie actually needs. Some suggestions is a pro life group from Spain.

Likewise it seems a good few of them are reporting the trolling post to their local Police forces.

These people whilst meaning well are massively wasting people's time.

Deux...Radio London..thanks. Usually listen to Radio4 .

DH'a uncle is a world renowned professor in a discipline linked to Charlie's condition. He has had the same issue with emails for the last month or so. And not just one email per person asking for help. Follow up ones calling him a murderer and worse

A good friend from university is an anesthetist and retrieval registrar for the flying docs in Australia - she has had about 5 Facebook messages in the last 10 hours from total randoms instructing her to return to the UK and assist!

I am sitting on the fence on this latest court attendance. I have fully supported GOSH and feel the parents have been ill advised through this.
I can fully understand why Charlie can't go home due to the logistics and can see why the parents wouldn't want a couple of hours at a strange hospice.
I wonder if this is more to do with Charlie's birthday, this may have been a private wish eg. If we get to his birthday things will be ok etc. His birthday will be a small ray of happiness that is within touching distance and not the all consuming grief that they must be feeling.
On the other hand, I would worry where it would stop and where this would leave poor Charlie.
Chris and Connie must be going through hell and I hope they have support in RL

Professor of Palliative Care speaking on Vanessa Feltz talking about practicalities.

And another suggestion to involve Trump...groundhog day there.

I've just read the papers from gosh - even transferring him from the ambulance to the house will involve a change in how he is ventilated. It made for upsetting reading.
I hope that a solution is reached asap for everyone

Thanks Deux..have it up online now

Ive no idea if earlier intervention would have helped, but it should have been an option for Charlie.

It was, and it was tried. GOSH contacted experts around the world, and were applying for authorisation for precisely this treatment. However, Charlie then had a long series of seizures over several days which caused catastrophic brain damage. That meant that treatment could not have helped and travelling would subject him to distress and pain; also the treatment could have given him diarrhoea which, in a child already so ill, could cause considerable pain and could endanger him.

Apologies, i havent read all the threads but if they have over a million pounds, cant they employ private doctors and nurses to do the move home?

Unfortunately Penguin, the last thread started just prior to the evening news. The parents were quoted as saying they would pay for private nurses and doctors to get Charlie home and recoup the cost from the NHS at a later date. Given the amount of public money which has already gone into Charlie's care and the court case this definitely got people's backs up.

Having seen the fall out of this case I can safely say I will NEVER consider returning to neonatal intensive care. Doctors and nurses having their lives threatened....beyond horrific. I wouldn't be surprised if many of the team caring for Charlie now crashed and burned once it's all over.

So yes hearing the oarebts say they might sue the NHS for the costs of a private nursing and medical team was a step too far. I criticised them and so did many others.

This morning I can see they are devastated and irrational. Last night I was muttering obscenities under my breath at the news report.

Hopefully the judge will rule on this today. Get Charlie moved to a hospice and agree a timeframe with the parents. I do also think he needs to put a plan in place for any potential fall out from this including plans to make Charlie a ward of court and remove the family if (god forbid) they attempt to disrupt this.

I suspect that the family's landlord and their neighbours in the block of flat might have something to say about walls being taken down.