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.

Have followed most of the threads and found the debate interesting. Tried to add to the deleted thread at just the wrong time.
Really difficult issue of balencing best interests of patients and families has not been well reflected in news coverage.

Piers Morgan on GMB asked, "Where's the harm if the parents want to take him to America?"
Imagine a hospital saying we are transferring our terminally ill patients to a researcher abroad for experimental treatment because it offers a chance of 10 % improvement. It wouldn't happen because it would not be in patients' best interests.

We can't assume families can always act in their relatives' best interests. That is one of the reasons why a palliative care professor says we should not have euthanasia.

Working in palliative care I see over treatment, often driven by relatives trying desperately to delay the inevitable. It's tragic for the patients and prolongs their suffering.

Some people are transferred home to die with loads of careful planning and yet still die in the ambulance or very shortly after returning home so don't get the peaceful time everyone hoped for.

This is in adult services but when young people are dying, things can go wrong, emotionally, which can lead to over treatment.

Apologies for the name change. Been here ages.

It takes months to get even a medically stable long term ventilated child home. The equipment, training for staff and parents, home oxygen, medication, care packages. Wanting him home for a week is just so unrealistic.

JR? Do you mean Judge Francis?

Most paediatric intensivists in the UK come from a paediatric background.

There are a few from an anaesthetic background but unlike adult ICU they are a minorityin the consuktant workforce.

None of my friends who work in PICU (or me, I do a bit of transfer) are volunteering.

My registration, livelihood and professional reputation matter to me!

I honestly don't believe that the person who has advised c&c to make a public request for a doctor thinks any Doctor will come forward. Just as I don't believe that they wrote that statement they read out in court on the steps of the court.

Where was the hate mail to the Gards posted? Whoever has sent them hate mail should be prosecuted to the fullest extent of the law.

You need a gas (wo)man (anaesthetist) x 2

Hey, does this mean folk in the profession also call them "gasmen" (and women!!)?

I thought it was only we "outsiders" who used that ... and then that we weren't supposed to say it?

I wouldnt want to be part of a Facebook group. Reddit would be better but I think everything seems OK on here now?

JR might be Joshua Rozenberg he tweets from the court. And is measured and factual.

twitter.com/JoshuaRozenberg

"The problem is that although everyone is entitled to their own opinion, there are millions of idiots out there who believe they are entitled to their own facts."

That is one of the most intelligent comments I have read in a very long time.

Currently without a team materialising AND a way of getting a full sized vent transported with all the kit to a hospice, there is no way a hospice could offer 48 hours. The transfer would have to use a portable vent, which is a short term option, with extubation a few hours later.

The issues and potential dangers to the child of transport and long periods on portable vents and as mentioned in court the risk of the tube coming out, not to mention the police escort GOSH have said will be arranged, would mean that just putting him back in an ambulance and popping him back to GOSH if things go wrong is going to be very hard to do. The big issue here is the one the judge has mentioned: the child must not end up suffering a painful, distressing death in the middle of complicated plans going wrong.

If transfer to a hospice is possible it has to be on the clear understanding that refusing to extubate is not going to happen. I suspect this is why GOSH have mentioned that the hospice's current offer may not stay open.

There is no way for me to ever be part of the hun Facebook generation.

But that is just me. Same for Twitter.

I have saved my sanity as a result.

If in the unlikely, or to quote Dr Hirano 'vanishingly small' event that they do recruit a PICU team will this team bring their own equipment or will GOSH be expected to provide it ?

I am happy to set up a FB group but don't want to seem presumptuous as I am quite new to MN and have previously been a lurker rather than a poster so don't really know any of you, nor you me.
Let me know what you think and if there is someone more suitable I promise not to be offended. If I do set one up I certainly would not want to be the only admin and would be happy to hand over any admin tasks to others.

DH started off as a medic and then became a dentist - weirdo!

That may explain his generally inappropriate behaviour in many areas!

It's really difficult to read the CA page on FB. I'm not sure the vast majority of them have actually read the court transcripts.

Do they have a particular hospice in mind and has that hospice agreed to take him ?

OMG! I've just read the letter on the CA page. That is AP?PALLING. No one should ever receive something like that.

My apologies opinionatedfreak, where I live most PICU consultants are anaesthetists originally but of course every area and country differs. Either way, drugs matter! And the intensivists are crucial to the care of such a dependent patient, regardless of their original background. I am in awe of most of them, they are amazing. (There were a few I met who probably could have carved a career in chess but such is life).

Not wishing to sound like the Head Girl or anything,

But after 2pm tomorrow maybe we can comment without deletion of the thread.

I'm concerned that this thread may be deleted in the interim though. Could happen.

zeezeek The ending of the last thread had a couple of mentions about the potential risk of having more children, and people being naturally very upset at costs being claimed back from NHS if parents decide to hire private ITU staff. C'est tout. [hope I haven't broken rules] nothing was ''nasty'' just righteous indignation.

I thought the judge has already said today, that Charlie wont be going home. That it will either be hospital or hospice. So why ask for a Dr to come forward?

The parents just won't accept he is gping to die. It's so, so sad that there is noone around them who will say "it's time to stop fighting, go and sit with your son".

I can't see them being able to transport him to a hospice without the media following . This would be so awful for other families with loved ones there.

Interesting Maryz and thanks for that, plus raises the whole issue of who deserves special treatment I suppose (as in above and beyond what's offered palliative patients normally).