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 need to get some sleep. There's been some very informative discussion here today.

If we need to move elsewhere, I'd prefer Reddit to Facebook. Same sort of anonymity at Reddit as we have here, and able to speak much more freely than we can here.

I noticed a post from opinionatedfreak who posted on one of the other threads about the logistics of ITU transfer to the US. They have some involvement in a transfer team and said they wouldn't volunteer for this job.

So for this kind of job, even a transfer to a hospice, do staff have the option of refusing? Is it entirely voluntary or would staff be rostered to do it? Another HCP, I think a nurse said that they could refuse to do something if they believed it unethical or not in the best interests of the patient.

I don't think the hospice will happen for many reasons. Will they have staff who will volunteer, the media circus will follow - easy to follow an ambulance under police escort, Sky will get their helicopter out, there aren't that many Childrens' Hospices in proximity to Gosh so keeping it a secret will be hard, hospice has to think of all its patients and needs to protect them and their staff. There's one a few miles from me and many people within a 5 mile radius of it will be aware of it as it has a high profile locally with lots of celebrity endorsement.

On the discussion around 'any loving parent would do the same', I think this can sometimes be viewed as a question that has gone unchallenged or unanswered. More like, wouldn't you? Please say you'd do the same. And for fear of upsetting, the answer becomes yes, yes, of course we'd do the same when in fact the answer sometimes might be well actually, no I wouldn't do that in a month of Sundays.

It's just all so horribly sad.

If the thread goes poof, I'd like to thank everyone who has contributed and shared their experiences personal and professional. all these threads have been a thought provoking read, everything from post-truth era to end of life care.

Hopefully we won't have to move the thread anywhere.

My friend says only post things online you'd be happy for everyone you known to read.
And remember that the parents could see anything we wrIte. This is a parenting forum, well know and if the parents have read comments on newspaper articles, it's not far fetched to believe they could read this. So just another reason to keep things respectful.

I too am going to get some sleep now.

I'll finish off by saying I hope tomorrow brings about some resolution. And as always my thoughts are with the parents and of course dear Charlie.

deux transfer to hospice with agreed pathway in place is different in my mind to home (especially home for a long duration of PICU care - the idea of that is just bonkers).

Anyway I suspect a team will be rostered to move him to the hospice separate to the day to day acute work.

I would be happy to do that as I perceive it to be a safer place to go personally & professionally but suspect that the most experienced clinicians will go if read. With a plan about what to do if there is a refusal to let ventilation bywithdrawn.

I would also hope that by giving a good death we could help the family to start to come to terms with things.

I've been involved in quite a few paediatric icu deaths. They remain with me. The team really try to make positive memories for families with walks/ picnics (like the one on gosh roof garden all those months ago), baths etc.

Feeling that someone was to blame, especially if it is an erroneous belief, ears people up. I've met families convinced that hospitals have killed their relatives (when they didn't) and then unsurprisingly failing to get justice at an inquest/ Medico-legal claim is like a second loss.

I also know of families where care has gone devastatingly badly wrong for their loved ones. I have no words for how that must feel. Several eg. Martin Bromiley have turned it into a force for good.

Why are the parents requesting 'a week'

I don't think it's about Charlie's birthday coming up. I think they're hoping that in a week something new will materialize - a new American doctor, Trump sending the Air Force One to pick Charlie up, magic? They're just trying to kick the ball further down the road.

I think everyone has handled a difficult discussion with great sensitivity actually, even when saying tough things. This thread has been nothing but educating and informative.

And yes, as ever just humbled by being able to kiss my beautiful healthy children goodnight in their own beds in their own homes tonight, unlike Charlie's parents, or many of the parents with children in the care of the incredible GOSH. My heart truly goes out to them all.

Deux The NMC Code says:
"4.4 tell colleagues, your manager and the person receiving care if you have a conscientious objection to a particular procedure and arrange for a suitably qualified colleague to take over responsibility for that person’s care.'

However this only applies under two cicumstances :

"Nurses and midwives may lawfully have conscientious objections in two areas only:
Article 4(1) of the Abortion Act 1967 (Scotland, England and Wales)
This provision allows nurses and midwives to refuse to participate in the process of treatment which results in the termination of a pregnancy because they have a conscientious objection, except where it is necessary to save the life or prevent grave permanent injury to the physical or mental health of a pregnant woman.

Article 38 of the Human and Fertilisation and Embryology Act (1990)
This provision allows nurses and midwives the right to refuse to participate in technological procedures to achieve conception and pregnancy because they have a conscientious objection.'

I think the hospice staff will have counselling skills and be pretty good at it.

Hopefully some lovely,caring staff member will be in a position to take the parents under their wing and get them through it.....in my mind I'm imagining that certain type of person we've all no doubt met. If the parents can build a bit of a rapport with someone then hopefully it will be a bit easier for them

I look at Connie and think of my own DD.

I remember reading Lance Armstrong's autobiography of his cancer battle and thinking that's how you fight this 'head to America and throw the book at it' Films like Lorenzo's oil seemed also to give the message - fight it and you will find a cure, that we can 'defy doctors expectations'

I was thinking about this just a few days ago. There seems to be a cultural difference. If you look at blogs about disability or terminal illness, in Europe/Asia they will be more about managing, coping, trying to live with the horrible situation and in America it's all 'fight fight fight and pray'. The latter seem to believe that they can control the situation if they just fight enough, if they just want it enough. Whereas elsewhere people understand that not everything can be controlled, and it's not a battle.

New development - I and other colleagues on SM with "intensive care" in our profiles are being contacted randomly by #charliesarmy to see if we would provide an inhome intensive care unit for a "few days". I'm not even a paed intensivist. Naturally, we are maintaining a dignified non-response policy (while seething, and posting on forums with anonymous handles of course!)

Sure, let me just grab my oxygen and air pipelines, vacuum suction, syringe drivers, and my camp bed, and I'll be right along.

What a grotesque circus this has turned into.

Griefleavesitsmark I don't think C&C wrote the statement that CG read out on Monday either. Probably their publicist or legal advisor did it.

Re ''fighting illness All too often this adversarial term is used..but why 'should' a person 'fight'? The illness can't really be fought off, just endured, put up with, until it either resolves itself, or not.

We don't expect a much loved pet to ''fight'' a harsh diagnosis, yet a 'cure' by emotional robustness is no more in our power than theirs.

straighttalker that is nuts.

oak my father and I had a chat about the anthropomorphizing of cancer. "We are coming to get you Cancer" Stand Up To Cancer etc.... and how unhelpful it is to people who are going through treatment. The words "fighting cancer" imply that if you die you didnt fight hard enough, when we all know that the reality is that it is a disease that sometimes doesnt get destroyed by treatment. If strength or determination was key then no one would die of cancer, or any other terminal diagnosis!

Straighttalker that is awful! I have to have pity now as well as sorrow for the parents. They are so desperate for Charlie not to die at gosh. I feel the same for gosh how awful for a fantastic hospital which saves thousands of children and puts children before anything to have such a complete breakdown of trust with parents. I hope the parents can finally find peace even if it is a long way down the road, nothing is as fierce and savage as love for your child, but most of all I pray for Charlie that he may have a peaceful and dignified passing.

Pyong I have already ,after many recurring bouts of cancer, said enough is enough. If my last lot of treatment doesn't work I do not want anymore. Simple is. I no longer want a sick bucket!

Sostenueto

I commented on a previous thread and have largely kept my counsel as I've sat on ethics boards as a lay-person, this has gone too far. I've sat on boards that have discussed treatment and end of life care when individuals don't have volition and the people involved are so full of compassion for the individual, for the person.

What's being talked about now is not the person concerned. The person concerned is being forgotten in a shit-storm, the person concerned is Charlie. On an ethics committee he is what matters, not his parents, not the doctors, not the courts. Him, a person who lives, but has absolutely NO VOICE and NO CHOICE and I feel so sad for him.

He is being used as a political bat, I'm not sure if his parents see him as a person any more, I think they see him as a symbol of hope, he has to have personhood. He exists. He has rights.

And we can't forget that.

straighttalker

I hope never to know the pain Charlie's parents are going through.

They clearly believed he had a chance at survival, who can blame them for trying. Discussing your perceptions of his parents intelligence levels is crass.

Im not sure how posting on this thread, patting yourselves on the back for being so wise whilst willing the poor baby to not be given a chance at survival, is accomplishing anything but making yourselves feel superior.

Haven't posted on here before, but I think I can speak for almost everyone who has posted when I say nobody, but nobody, feels superior when they are offering their opinion on the subject. None of us would want to be in this situation, but the clarity which comes with not being emotionally attached puts us all in the position of being able to think critically about it and make rational judgements/statements. Baby Charlie should be at the heart of all discussions on the matter, and while I have no doubt that was the parents original intention, somewhere along the line he has got lost. I hope there is a resolution today.

I have never felt superior. How could I feel superior, I lost a baby boy at 6 months. I am terminally I'll. People on here have lost loved ones. One of our posters on original threads has a mito child recovering in hospital herself. We understand and feel sympathy for the parents. But we have all been more concerned with Charlie and what is best for him. We have experience of death on this thread. Bear that in mind before you call people superior.

I've been awake since a ridiculous time this morning so I've been catching up. It was a relief to see the thread is still here

I've been in the CA page and they're going all out to try and make C&C's wish come true. Apparentky they're contacting hospitals all over the country, and ones in other countries, as well as tweeting hundreds and hundreds of doctors. They have also contacted Trump and the Vatican.

They seem so focused on the actual transfer of Charlie and why it's "definitely possible" but don't seem to realise it's the weeks worth of ITU care that is the reason GOSH and the Judge have said going home isn't an option. They seem to have no concept and genuinely do seem to think that all they need is a doctor and some oxygen cylinders and the jobs sorted. You've got to admire their determination and persistence even if they're looking for a solution that in all reality they will never find.

To the nurse who said she and her colleagues have been contacted, well I'm just surprised. Maybe I should log into my work email account and see if I've received a similar request....

I hopeC&C managed to get some sleep last night though I doubt it very much. They just be incredibly anxious about what will happen today although I suspect they will produce something that will drag this on for longer.

What would happen though if somehow they have managed to track down a team who are prepared to do this (I imagine from abroad as I doubt anyone in the U.K. would be so crazy to agree to it and put themselves in such a position) can it actually go ahead if the Judge has already said it's either a Hospice or the hospital?

I feel sorry for Judge Francis today if the parents do produce an alternative because what an awful position that puts him in, especially if it's a suggestion that would ultimately draw this case out longer. I would hope that that seeing as doctors have confirmed Charlie can feel pain he will put a short time frame on when L.S should be withdrawn. To leave Charlie suffering for another week, or possibly longer, would be inhumane in my eyes.

I've got an awfully busy day today so I won't be around to follow this thread as things unfold so try not to get it deleted so I can catch up once I'm home this evening. Hearing the outcome on the news just isn't the same as being part of the discussions on here. Who knows though, maybe C&C will ask for this afternoon's Trial to be kept private. I doubt it though.

Im not sure how posting on this thread, patting yourselves on the back for being so wise whilst willing the poor baby to not be given a chance at survival, is accomplishing anything but making yourselves feel superior.

There never has been or will be a chance for his survival which throughout the threads we have all acknowledged is incredibly sad and have shown great sympathy towards the parents.

I think only one person has passed a negative comment about the parent's intelligence so I don't think think you can generalise and imply it's something widespread that is going on amongst us all.

Nobody is willing Charlie to die, what a really awful thing to say, why would we want a baby to die? All we've done is talk about the fact that no matter what parents do or what they want, Charlie sadly is going to die and that what is best for him is what should be the priority.

Maybe the fact we are discussing this factually, critically and realistically is what makes you think we believe we are acting 'superior' but really we are just discussing the case from an angle of being impartial to the situation.

A lot of members on here have spoken about their own experiences of losing their children and having to withdraw L.S as well as posters talking about experiences of their own illnesses and the thread has been very emotive for a lot of people who have been affected by Charlie's case, so to claim we are being superior is very unfair to people who have shared their stories.