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 think with mediation you both have to be willing to compromise. Although offering mediation looks like the hospital are doing everything, perhaps the parents don't trust they would accept the result.

Is it at all common practice for a child as ill as Charlie to be able to go home or to a hospice?

Well yes, but they get extubated when they get there. Which is why Charlie would only live a few hours.

Children who are medically stable also get ventilated at home long term but it takes months to organise. It's really not as simple as looking for staff and a vent.

Sorry if I have derailed the thread. We get these hate emails all the time in work (and I must say some are quite epic) but I was really just curious about such things on the internet,

I must emphasise that I totally condemn sending hate emails to anyone.

Have been following the threads, not commenting much, but having just looked at the CA page I just have to ask - does nobody else find their fervent obsession with Charlie extremely macabre? It feels like everyone posting on there is doing it for their own benefit, for their five minutes of fame. Seems to have literally nothing to do with Charlie's best interests, and a whole lot more to do with a "look what we can achieve" mentality. It's utterly baffling.

The trouble with the home debate is it really isn't feasable especially if the parents want a week before palliative care begins. You would need 3 teams working round the clock to sustain Charlie in his present condition. 2 specialists at least, as no one is going to work alone, etc and all equipment, medication. The list is endless. And. What if the agreed time comes and the grief stricken parents refuse to allow it to go ahead?

Even a hospice, IMO, would be inappropriate. You would have to have police or security at hand ,if God forbid, such a scenario happened.
And what absolutely angers me most is that the judge should not have to decide where and when it should happen. The parents want choice and understandable, but comprising when so distraught is not on their agenda, hence everything goes back to court.

lego
Yes I get the need for staff and the security issues.
But I also remember from my own experience just how difficult the staff made it. None if us know what has been said between the parents and staff.
We were told to go home and ut didn't matter whether we visited or not.
When treatment was stopped (we expected her to die) we were not allowed to hold her. (Fortunately she survived).

There have been a few posters mention the possibility of parents suing the hospital, and also attempting to recoup costs of any ICU care at home.

I missed the deleted thread yesterday; is this just posters speculating, or was there some real suggestion they might actually do this?

I do, however, believe that today should really place the final full stop to this case and the decision when pronounced I.e. time and place should not be in the public domain. In fact the judge should order media blackout for today.

I think another point up thread was important. These parents have only just exhausted the treatment options. It's only now they are coming to terms with it being terminal.

The email on FB is vile and hurtful, and hopefully the writer will be held to account. No one should be subjected to such vileness.

In another note, it strikes me that C and C's "brutal" comment is telling. The end of life a child's life is not pleasant, it is brutal. Fact. Normally the doctors and nurses who have tirelessly cared for the child and shared this terrible journey with him and his parents would be there to support and comfort the parents in their final agony. PICU are experts at this, compassionate and supporting.
Sadly due to the breakdown in the relationship between C and C and Gosh, they are not going to find comfort at the hospital. How sad that they would rather be surrounded by intensivists who they have no relationship with rather than the team who have nurtured their child.
I'm not going to lay blame here on how and why that breakdown happened, but I don't feel that the breakdown should now enable the parents to have what they want at the expense of the needs of their child, whose best interest can not be served by a move at this point.

With this afternoons events looming I wonder if a thread in the other place with a non specific title would mean those who are following these events closely and wanting to talk within guidelines can do it without people seeing this thread come up in active. Much of the risky posts are one offs from posters seeing this come up in active threads.

Nellie It's ok, it was clear you didn't condone it. I just felt for myself that whatever bile some idiot has written to them, I don't want it in my head. And while I disagree with many of their views and choices it's terrible that they are getting such things.

Lego, sorry that you seem to have had a very firrerent experience to anything that I recognise. I'm sure you can profoundly empathise with C and C as you have experienced a similar breakdown in relationship. My relationship was very different, and I can not thank the NHS enough for their support in my worst nightmare.

I don't understand how anyone can think GOSH are putting obstacles in the way. the entire uk is watching this case - why would they try to make things difficult for the sake of it.

cheby I think it was their solicitor that said they would get their own staff and bill the NHS. Regards to them suing, I think that is being speculated about due to the statements made on Monday by Connie in court, and by Chris outside the court.

I think, yesterday it was mentioned that it was thought another case may be looming following on from the comments about a missed 'window' of opportunity, and this led to some discussion on whether there would be a case or not. And then, there was also mention of whether there could be a case against the USA doc for raising false hope. It seemed to be concluded that the latter would not be possible, and that in terms of the former it was in general in agreement with a recognised body of clinicians / reasonable, in terms of the condition. I hope that helps a bit.

I can't see how they can have any grounds to bill the NHS given they would have to prove some level of responsibility upon the NHS to give them what they want - which they don't have.

I really don't see how dragging this out is helping anyone involved. I wish their family would take steps to calm things slightly and help them deal with things as rationally as possible rather than further stirring up the media side of things which really won't help them.

LBC radio presenter [08:06] asking , more or less, if any ITU staff are out there, so the family can take Charlie home.
A medical ethics professor is now talking of practical logistics in this situation stating 'what is best for the patient'.

Although the post is deleted now, there was another posted who came on to describe the Bolam and other tests used in such a case but as it isn't here anymore i can't elaborate further, sorry.

Sorry lego and head of the hive, I miss addressed my last post.

OMG..radio LBC presenter Nick Ferrari saying ''Take the wall of parent's house down to fit equipment in''.

I dreamed about this last night, led to a sleepless night, so may have to leave a bit I think. However I have been trying to think of the positives which might come out of this case, and one might be about the importance of choice in palliative care, for both adults and children and the importance of that. For example apparently many people die on hospital who would rather be at home or in a hospice. Hopefully, that might be an area which could be better planned, or people listened to about.

It os a bit grim how some are reporting this, even on 6 Music yesterday it was not the most compassionate reporting.

I was just reading the comments on a BBC news article, although lots of comments are saying he should pass away peacefully there are many comments still saying they should give his parents what they want as they're the important ones. A section people don't seem to comprehend that ensuring Charlie is comfortable is the main thing.

There seems to be a great lacking of logic from a lot of people, or at least a great lacking of consideration for the logistics needed to move such an ill child let alone set up "base" in a non clinical setting.

When it looked like DS would need to be transferred to another hospital and I was briefed on the process I was amazed how complex it was. The lack of beds/awful weather meant the transfer didn't happen but it certainly wouldn't have been easy and that was hospital - hospital.