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.

Why is nobody advising C&C? Or is it that they just won't listen?

I imagine they're beyond reasoning with to be honest.....

Am I allowed to say that or is it too anti-parents? Genuinely don't know what we can and can't say anymore.

And I think the brutal is to the parents not to Charlie.

There is a staffing crisis in the NHS in general. As it happens, this is particularly bad amongst paediatric doctors in general. PICU is one of the sub specialities included. Many PICU consultants are already doing the work of more than one person, due to unfilled posts. PICU is not an area you go into in this country if you are motivated my money, and private work.

So, I would postulate that no PICU consultant (it would have to be a consultant for long complicated legal reasons) would answer this call for a number of reasons:
1)They are already too busy trying to maintain cover for their own units
2)There would need 24/7 presence, so there would need to be several such people involved, and they know that would not happen
3)The perceived risk of not having an exit strategy
4)The perceived risk of being vulnerable to litigation, GMC complaints, and interference from the Charlie's Army eejits

I can actually understand the parents' desire to take Charlie home. But sadly I fear they can no longer distinguish between unwilling and unable. It would be very difficult to take Charlie home to die, but with a lot of resources, including from the police (thanks to Charlie's Army - those idiots are making it worse for the family), it would probably be possible for him to go home and have intensive care withdrawn within an hour or two by the transfer team. But home for days? Just not feasible.

I saw an interview many years ago with a chap who had terminal cancer. He said his initial reaction was "Why me? What did I do to deserve this?" but very quickly he came round to thinking "Why not me? What's special about me that this shouldn't happen to me?" he felt that once he made this shift in thinking everything became easier because he no longer felt like someone/something was victimizing him he was just unlucky, really, really unlucky but noone was to blame for that bad luck. I hope against hope that Charlie's family can find a similar degree of peace with the terrible circumstances they fing themselves in.

I also think any doctor who did this would be uninsured as not legal out with the ITU setting. So they would then be risking their entire career as well as risking being sued when Charlie does pass away and it's doesn't fit with his parents ideal of how he should die in tranquility. Who would want to take such a risk?

Oh leghoul :(

I can't imagine doctors will come forward. The risk of transfer and attempting to manage at home must be so high. Imagine if something went wrong, and he died in an unplanned way.

C&C have said they want to bath him and put him to bed in his own cot at home. I full understand the sentiments but even if he was at home, supported by a full ICU team, it's surely not possible to Bath him and put him in his own cot? Not useless he was off the ventilator?

Have they really thought through what they are asking here?

Spend 6 months publicly critisicing the medical community and telling them you know as much as they do because you've spent a few months on google; whip up an army of huns to send death threats to doctors when they don't do your bidding; drag them to court every time they make a decision that doesn't fit with the rosy view you have of the prognosis; make it abundantly clear that the priority is ticking things off your parental bucket list regardless of the suffering it causes; flat out refuse to believe medical evidence when it doesn't fit your view

And THEN appeal to the good nature of a doctor to give up their time to come and help you override the advice of other doctors?

I can't see any doctor or nurse coming forward to do this . Surely it would be seen as them sticking two fingers up at the decisions that have been made by the judge , not to mention that it wouldn't be in the best interest of Charlie.

Not sure the unavailability of doctors is related to the media profile of the case. They're asking for something very out of the ordinary. I doubt there'd be many takers regardless, especially as they, put diplomatically, evidently don't accept the GOSH position.

its not on their fb site yet the statement i mean

all people believe in are the headlines-thyre being blocked from taking him home

its ridiculous

I feel so desperately for them, they are going through hell all of them including little Charlie.

When a baby is stillborn some parents take their baby home in a cold cot to spend time with them before they let them go. I am sure this would give them some comfort. They could bathe him and put him in his cot etc. Surely something like that could be arranged for them when Charlie is at peace? Does anyone know if a pm would need to be done even if he cause of death is well established?

Maryz, the link about GOSH /\ above end of life care isn't working?..maybe crashed.

Writer I took the comments about it being brutal to move Charlie to a hospice as being because he would then have ventilation withdrawn within a few hours of his arrival there, whereas his parents want him to be allowed home for a few days before ventilation being withdrawn, which they presumably feel would be less brutal.

"it would be brutal to move to hospice for just a few hours."

I took this to mean that they would go to a completely new place with completely new staff and then Charlie would die before anybody had become acclimatised to the new surroundings. Not something I would want to do either.

Writer it seems a difficulty with Armstrongs' party having understood what a palliative transfer is for a ventilated patient. It is a specialist team moving a patient to a place where they will shortly be extubated. There was a very kind and extremely well expressed description on the deleted thread by a professional who has worked with such teams and explained how a transfer happens, but the purpose of it is to extubate at that place and the patient dies there. The team then leave with the equipment.

This is the option Armstrongs' party have been offered since January if this point was reached, as has been mentioned in the court and press several times. It has never meant for any patient that an ITU can be set up for a week in a family home, and a hospice is also unable to provide fully staffed ITU care.

There must also be concern that once a period of days or a requested week is allowed, that deadline may become further extended.

TheWeeWitch Sadly, making a public request like that means they will have to screen for individuals who, either because of mental illness or attention seeking, will claim expertise they don't have.

Also can you imagine the media circus that would no doubt take place outside their flat , plus all the CA gang- hardly a quiet , dignified scenario.

Also I imagine they would need an anaesthetist on hand too. In my experience, when it comes to stabilising airways and ventilators that's usually the job of an anaesthetist, not just a standard doctor, as that's part of their speciality.

I can't see any PICU doctor who would be willing to be in a home environment with a ventilated child with no specialist back up if a problem occurred with the ventilation.

I think there is a subliminal message re: the "brutality". It's nothing to do with the transfer, it's to do with the fact that Charlie would have ventilation withdrawn pretty shortly after arriving at the hospice. C&C just cannot cope with this at the moment. I genuinely think they believe that if they get him home somehow for a week, there will be some other intervention that can be made in that time to further delay

I know this was posted up thread somewhere but I can't find it so am posting again - without any comment whatsoever - but with some pertinent sections highlighted:

"Today, palliative care consultants at the hospital have had a lengthy, difficult and (sadly but understandably in the dreadful circumstances) unconstructive meeting with the parents. There remains no agreed plan."

"For reasons that are obvious, that process and the correct, safe positioning of the tube have to be monitored by an ITU trained nurse at all times, with an ITU doctor on call and close at hand. Those resources cannot be provided by GOSH to Charlie at his parents' home. GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door. There are then stairs to negotiate and corners to turn. The physical lay-out of the route between the ambulance on the pavement and their home would require Charlie to be taken off the ventilator and provided with only "hand-bagging" until he was inside."

"No specific or practical suggestions about private transport or nursing/medical care have been forthcoming from the parents' team."

news.sky.com/story/charlie-gard-great-ormond-street-on-the-key-obstacle-stopping-him-going-home-to-die-10961542

GOSH have already tried to find another hospital to take Charlie and none would, NHS or private. The chances of suitably qualified medical staff being prepared to take over Charlie's care at home seem non-existent (even if you could get past issues regarding equipment, insurances etc) and I can't believe that the parents don't know that. Tomorrow will be another afternoon in court that should be an afternoon spent with their baby.

As ever, MNHQ, your censorship is completely inappropriate and over the top.

You are running (very profitably) a discussion forum for adults - something which I think you tend to forget.

Yes, yes, it's a parenting website.....but since when does that mean that parents must be supported no matter what?

Charlie should be front and centre in all discussions of his story. By effectively banning anyone from even mentioning that the actions of certain individuals might be actively causing him to suffer you are basically giving credence to the notion that the rights and needs of the parents are more important than his...a dangerous idea that GOSH are having to fight in court.

I'd like to remind you that GOSH said in their statement yesterday that if Charlie has any relationship with the world it is one of suffering - and we learn today that certain individuals are seeking to prolong that suffering so that they can "have what they want for once". And no one is allowed to mention it?

A factual discussion should never be censored....and it is far, far too often on this website. And I know why...it's because you are indulging the school prefect types who trot on to threads to bossily tick off their fellow ADULTS because they, personally, don't like the way a discussion is going...or, more likely, want to polish their halos and get a bit of self-righteous validation for their morally superior selves.

Ridiculous.

Leghoul, I so wish that your words about your experience could somehow reach Charlie's parents. I am so sorry for your loss.