Charlie Gard 10

[user1498911470]

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"

Starting now as 9 will fill up quickly.

...I mean until the next court session.

Lapin I didn't actually consider that.

I'm seriously struggling to keep up with this thread!

Thanks for posting the Blogging Barrister link. It is excellent.

American healthcare I don't mind saying, confuses the hell out of me.

Didn't the Doctor who originally offered Nucleoside therapy say something along the lines of, he "wasn't aware how sick Charlie was" [when he offered it] but he was still "willing to offer the treatment if the parents paid"?

That doesn't sound too ethical itself. Charlie is a desperately sick child, not a lab mouse to just 'give it a whirl' on.

It has already been suggested that the reason cy wants to be in the mdt meeting is to make sure gosh doesn't bribe or coerce dr hero into refusing treatment.

In the USA, do you get free treatment for rare diseases if you join a trial? That's how I imagine it to be, but I know nothing.

The thing i find wierd about us healthcare is the being paid for blood and sperm donation.

They are basically buying and selling bodily fluids for profit.

Logical
From the original High Court judgement:

The doctor in the USA said as follows:
"Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely."
However, the US doctor made it clear that, were Charlie in the United States, he would treat him if the parents so desired and could pay for it. As I have already said, funding in this case is not an issue. The US doctor also confirmed during this telephone conversation that he had never treated with nucleoside therapy anyone who had encephalopathy. Therefore, he was unable to indicate from any scientific basis whether a patient with encephalopathy would respond positively.

I think this may have been Dr Hirano.

In the USA, do you get free treatment for rare diseases if you join a trial? That's how I imagine it to be, but I know nothing

"treatment" doesn't include care
so even if your treatment/meds were free, your nursing care would not be (nor would other hospital expenses)

this is interesting
americans talking about the cost of an icu bed

www.ar15.com/forums/t_1_5/880324_how_much_does_Hospital_ICU_cost__.html

Watching The drug trial (iPlayer) - I think someone mentioned it earlier on? It's about a drug trial in healthy adult men that went massively wrong. And people seriously want to experiment on a dying baby like this?! :(

and this

I work in a surgical/trauma ICU. A surgery pt is charged just under 6000 per day and a trauma pt is charged 7900 Of course, this is justo stay in the room. No meds, no OR trips, no diagnostics or labs and no doctors.
Ouch.

I met Connie briefly outside GOSH when I was last there with my youngest. I wished them well. I still wish them well. I know I would fight for a treatment for my daughter if there was one. But there isn't.

However CA, are doing more harm than good. On Thursday I have to take my youngest back to GOSH to the metabolics team. I am dreading it. Not because of the appointment. Because unless there is a result from all the blood and urine samples, it's going to be pretty much the same as the previous appointments. But because its stressful enough getting a child with extra needs there without this circus

We really are lucky to have the NHS, even in its current state.

I watched it the other night Beyond. Horrific. I was thinking about Charlie when I was watching it.

There's a rush on to get hundreds of thousands of signatures to a petition to "take to court" this week to show the judge.

Seriously? They think the judge will say, "Oh look. Some fuckwits on FB think I should "save him." OK then."

That is awful for you @misdee and for your daughter... and all of the other parents and families of children who are being treated at GOSH.
They should really think about what they are doing to other people!

for you and your daughter @misdee

That was the one, Beyond. Required viewing for CA, I think! Horrific.

misdee I sincerely hope that some CA read your post and think hard about what they're doing. I also sincerely hope you get results/what you need from the appointment.

We really are lucky to have the NHS, even in its current state

This whole think shows how little people realise that!
That people think "treatment" = just a doctor walking in and giving you a magic pill.
People have no idea of the background costs, the basic running costs of just being in a hospital bed.

I think more people should see copies of itemised bills from other countries.

@11122aa

Great link - very well articulated summary of the position

@misdee wishing you and dd well

Years ago i had family in south africa. They have privatised healthcare, presumably not dissimilar to the us. The pp above reminded me of my sil showing me the itemised bill for her second child- apparently they were querying the 24hrs in picu, which they were told was "standard" for all births.

Anyway interestingly they (and everyone else we spoke to- it usually came up when the heard our accents) have the opposite view to americans. They think it's utterly amazing that you can just go to hospital and be treated, for anything, free at the point of care.

I really don't get why the us is so anti "socialised" medicine.

I find it so unnerving then they imply that Charlie can have the treatment if parents pay for it.

So they'll experiment on a baby if the parents fund it but otherwise they're happy for him to be left to die.

And these are the kind of doctors C&C trust over the ones in GOSH?

It just doesn't sit easy with me.

There's a rush on to get hundreds of thousands of signatures to a petition to "take to court" this week to show the judge

Well the judge said last week he would decide the case on evidence not tweets, so I doubt the petition will make any difference either.He is only interested in hard evidence and what is in Charlie's best interests.