Charlie Gard 9

[muckypup73]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

[LovelyBath77]

Yes, I think that might be why they don't want the scans done. Because then the new doc won't treat.

So, I wonder what will happen next. There are two different outcomes,I guess:

1. (most probable and what I think the Judge /GOSH might expect)
   

The research doc comes over and after discussion won't treat due to level of illness and brain damage. Gards have time to try and come to terms with this before Judge says at next hearing he confirms the original decision.

1. The research doc does decide to treat. Either this happens at GOSH or USA. Charlie has a 3 months trial which won;t make a difference (sadly, but seems would be the most probable outcome) and dies.
   

[Lexieblue]

The one thing I will say, despite fully supporting GOSHs position, that it needs to be looked at how the relationship between charlies parents and hospital became so poor that they distrust everything they say, such a long hospital admission you would think the trust would be unshakeable.

[CaveMum]

Thanks for the new thread. I'm going to fill the old one up with repetitive posts otherwisecpeople will keep posting over there.

[LogicalPsycho]

I'm sorry, but even if Charlie wasnt laying unresponsive on Life Support, he is deaf

The sentiment of this is mawkish in the extreme...where do these people get off?

[LogicalPsycho]

Image fail. I meant this:

[muckypup73]

Lexieblue, because they want to save their child and thats it b all and end all. And save him at any cost.

[Lexieblue]

I think that is certainly part of it mucky but I don't think false hope or clutching at straws is necessarily an unusual phenomena. But as professionals you're trained to help people through it and mostly it's just part of the grieving process

[sodablackcurrant]

Thanks for new thread. I suppose Monday's meeting will not be reported on in court, or will it does anyone know?

[DorotheaBeale]

There are two different outcomes,I guess:

Or, just possibly, the treatment works enough to make some minimal improvement in Charlie's condition, but not enough to give him any meaningful quality of life.

I suppose everyone has their own definition of what they consider to be meaningful quality of life.

[PacificDogwod]

The GMC’s Guidance “0-18 years: guidance for all doctors” emphasises two matters in particular. The first is treating children as individuals and acting in the child’s best interests. The second is, if it is necessary to do so, putting the child first. Paragraph 4 of the Guidance says: “When treating children and young people, doctors must also consider parents and others close to them but their patient must be the doctor’s first concern.”

Surely that is what matters: 'their patient must be the doctor's first concern'.

[muckypup73]

Lexieblue, I truly do not belive Gosh have done anything wrong, what I do belive is the parnts have fought against absolutely everything gosh has said or done, therefore making gosh job completely impossible.

[Lightlovelife]

Not if they don't get their own way Lexie
We had a relationship breakdown with some parents (in a school, so not life and death). We did everything we could reasonably do to help the child, but the parents wanted more.
Whatever we did was not enough. Eventually he moved to the next school, where he was permanently excluded within a very short space of time and then they realised how much we had done. Now, years later, the parents talk fondly of the school!
Remembering that family I can see how easily and quickly relationships break down. I don't know the details of the case but I suspect that once they started researching treatment which the hospital said it couldn't/wouldn't provide the relationship became strained.

[MontyPythonsFlyingFuck]

Lexie, I think that given the number of dreadfully, terminally ill children GOSH cares for, and the number of times they have to persuade parents of the true state of affairs, it's inevitable there will sometimes be no way to reach agreement.

In this case, releasing the medical records apparently also released an email between two consultants which described the parents as "the spanner in the works", which probably contributed. But I suspect that they would have got to this point anyway (I don't think the records were released until the court case: the court case would never have happened if Charlie's parents had been persuaded of GOSH's point of view).

[muckypup73]

PacificDogwod, yes exactly and that patient is charlie.

[milliemolliemou]

Fantasy. I think it's also because (as I gathered upthread in 5 or 6) moving a seriously ill child for brain scans is invidious, whether it's EEC or MRI. If the doctors do so now to resolve the judge's questions and the whole quandary they may be going against their initial resolve to cause no harm or pain to the baby.

Can someone tell me what the state of play is now?

[GabsAlot]

thanks for thrad mucky

and lets say treatment goes ahead in three months nothing has changed what happens thn a new case to be heard?

because thy will never agree to switch ls off

thy said thy would befor but dont believe the had any intention to go through with it

[saoirse31]

Hard to see what American Dr can really recommend in terms of any treatment. The latest gosh statement makes it clear that Charlie has no quality of life and that can't be reversed.
Awful siuation.

[FantasyAndHope]

I have been thinking about this whole charlie gard case. I remember when I first heard of it. They needed £1.2/3mill not sure on to figure. However whilst this campaigning was going on there didn't seem to be any hint of why they were going to court. I presumed that the only issue was that they Needed the money.
I think it's gone too far and poor charlie is just at the centre for something the media to feed on which is sad.

[totallyliterally]

@Lexieblue I think from the court today it was clear that they won't work in the accepted boundaries. And that isn't really a criticism as in their position I would question stuff. BUT I would also like to think at some point I would look at all the evidence and say ok. They know more than me and I have to trust that.

But there is all the CA and family saying, no don't believe GOSH, they are wrong. So that small part of doubt becomes huge and then you won't believe anything.

And the major overriding issue (from the GOSH report yesterday) is that they believe they should have the right to make all decisions. That (is my understanding) caused the major breakdown. When they were told, actually no you don't is when it had to go to court.

As the team at GOSH believe that Charlie should come first and it's time to let him be at peace. And the parents don't. There isn't a middle ground

[MirandaWest]

I am wondering what happened around the time his life support was due to be switched off.

[BoreOfWhabylon]

Writerwannabe83 The parents have said before that they are "excluded from meetings". They seem to feel they should be present at all clinical discussions.

I wonder if, because they have been there so long, they - and Connie especially - just cannot recognise that they are not part of the clinical team.

It must be hideous to be working there trying to deliver care to Charlie in such a tense atmosphere. They will be watching like hawks and questioning every action of everyone. I've occasionally had'hostile' patients/relatives and it can be very very draining.

It will be impacting on the families of the other patients there too. Especially loudly praying pastors and American lawyers demanding entrance for their latest photo op.

[totallyliterally]

@saoirse31 he believes that his treatment can improve the quality of life (by 10% or more) and possible reverse some of the brain damage.

So he thinks it should go ahead.

But the big contested issue is that no it can't reverse the brain damage. And even if it can improve / stall it getting worse then actually that isn't enough.

[Puzzledandpissedoff]

I wonder at what point the extra time turned into GOSH realising a JR was in the offing

I've thought the same ... and also considered how betrayed the staff must have felt when they learned what had been done with their no doubt kindly meant offer

[TheWeeWitch]

@muckypup73 @Venusflytwat thank you very much for the collated info!

[totallyliterally]

Can someone explain what a judicial review would have meant. It's the one part I'm unclear about.