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.

And also, if the Judge allows the treatment to go ahead but says it must be in the UK due to Charlie not being well enough to travel, does that mean the NHS will have to foot the bill of the medication?

As CYs lawyer said, she wants to prevent factual inaccuracies at the meeting. Unfortunately the family tend to see any evidence that is unfavourable to their case as inaccurate. Given that the court case is constantly being punctuated by their comments and calling out when things are said that they find upsetting the chances seem slim that this meeting can happen as it needs to, particularly if what is being discussed isn't what CY is hoping to hear.

It would be interesting to know whether CY has agreed to confidentiality and silence regarding her using the media or social media on the discussions at the meeting. There is a transcript of the meeting going to the judge but one assumes "rules of engagement" were drawn up beteeen the parties and the Chair is there to guide the meeting. It would be wrong for anyone to discuss what is said prior to the case resuming but I am not convinced that will be the case.

For those of you curious about the cost of critical care here in the US. My DH was in the cardiac intensive care unit for 4 days. Three of them on a ventilator with a heart pump and hooked up to more machines than I'd thought possible. There was no surgery involved. The cost for those 4 days hospital only (i.e. no doctors fees) was $225,000.00. There were 4 doctors involved with his care who all charged separately. I don't know how much each of them charged, but I'm sure it was in the $1000.00s. We also took equipment home with us (a shock vest) which also had to be paid for. We were lucky that DH was double-insured so we didn't pay anything out of pocket.

I'm sure the cost of care in a paediatric ICU is probably comparable to Cardiac ICU. So theoretically Charlie's £1.5 m would probably last only 2-3 weeks out of what would be a 90 day clinical trial stay. Although the doctors may offer free treatment, hospitals rarely make the same offer. They may agree to accept what medical insurance pays as payment in full (insurance usually only pays 80% and the patient pays the rest), but Charlie won't have US medical insurance and I assume the NHS won't pay for care in a foreign country.

Personally, I think they'd have a hard time finding a US hospital to accept Charlie under these circumstances. They wouldn't want to 'eat' 2 + months cost for an ICU bed and all that goes with it. They would also know that the chances were great that Charlie would never be able to leave their facility, even if there were 'some improvement' in his condition.

In 2011/12:
• A ward bed cost an average of £413 per night
• A Level 2 High Dependency bed cost an average £857 per night.
• A Level 3 Intensive Care bed cost an average £1932 per night

From what i remember from my brief stint in NHS management is that hospitals are paid through block contracts. What is paid for services in NHS hospitals is less than the market price.

Does that make sense? Have been on the CA Facebook page so I think my IQ has dropped by about 100 points.

They don't have to worry about the medivac transport, the pastor is raising money to pay for it. He is holding a big rally in Queen's Square near GOSH and by the end of next week Charlie will be on his way to America.
There is also a 48 hour Facebook vigil.
I am also a Christian, but this for me is a 'Thy will be done' issue, not a 'my will be done' one. Will be interesting to see how it pans out.
He also talked about a million signature petition.

This talk of the selling blood in USA is reminding me of the scandal from the 1980s reported on recently which is subject of enquiry by Teresa May, considered to be the biggest scandal in the history of the NHS. Haemophiliacs were given transfusions and many ended up with HIV and Hepatitis due to US blood bought from prostitutes and prisoners in the US. If you haven't heard of this already (it;s been in the news a lot recently due to the enquiry) thousands of people died from the diseases.

Sorry, the rally is next Sunday.

And of course, it cost a fortune in compensation.

Is the pastor back in the UK.

What happens if Connie does start interrupting during the meeting, when she hears things that she doesn't want them to say? Will she be asked to leave?

Lovelybath I know someone affected by this. She has hepatitis. She has managed to get a drug to help her, but only after a fight.

What happens if Connie does start interrupting during the meeting, when she hears things that she doesn't want them to say? Will she be asked to leave?

I would imagine so, how can it be a productive meeting otherwise?

Hopefully she will stick to the agreement and remain quiet though I imagine it will be very difficult for her emotionally.

The Blood scandal is what killed Anita Roddick.

The NHS does, on occasion, fund treatment abroad. A friend's DC travelled to America last summer for proton therapy, funded by the NHS, as it was deemed clinically appropriate. My friend had fundraised in case they had to cover the cost themselves, but luckily it wasn't needed.

Right family gone can come back on properly now.

I think the judge is being so compassionate to the parents. The decision to turn Charlie's life support off should have been theirs but they have refused to do it. The meeting if there is no new evidence to help Charlie may convince Connie to take that last and tragic step. To have to turn off life support when the parents are so adamant they want it continued is going to be so heart renchingly difficult. If the parents can come to terms with it Charlie will be allowed to pass gently, pain free and with dignity. If they cannot I can see them being physically dragged out of the room as they scream the place down. That is not a scenario I would want to witness. So maybe Connie being at the meeting is a good idea. But my greatest fear is she is beyond reason now, backed into a corner, her son effectively untouchable due to the circus that surrounds him and their dogged (who can blame them?) Fight to prolong his life no matter what has made it virtually impossible for her to admit it would be the best thing to let Charlie pass. I feel such deep sympathy for them all. I think they will regret going public with this for the rest of their lives.

Cannot understand why people are still posting about something that may not happen.

The meeting is with the docs tomorrow (bet they are looking forward to that),

And then a full hearing at the end of this week.

How is the little guy doing anyway? I get the feeling he has been forgotten, but he is not in pain, he is on GOSH administered morphine. Great decision.

They don't have to worry about the medivac transport, the pastor is raising money to pay for it

Any money coming via that Pastor would soon dry up the second they decide that the treatment isn't working and wanna switch to end of life care!

Which wouldn't be so much of a problem were it not for the likelihood that he'ld arrange for Charlie to be in a christian hospital, so even with the parents own money, end of life care would not necessarily be forthcoming

I assume the NHS won't pay for care in a foreign country.

The nhs will pay for care in another country. If a) that treatment isn't offered in the uk, and b) if it is deemed that the treatment offers benefit over that offered here.

In charlie's case, the treatment was looked at, and decided it offered no benefit because of his brain damage.

But i agree, i doubt any us hospital will touch him. It is a very real possibility they will be left in GOSH's position, when the treatment doesn't make a difference, the parents money runs out in a few months, and nobody has the funds to either keep in picu or fly him back home.

Then it will be about money when they turn his vent off.

No. He was making a video in the car filmed by his daughter from the passenger seat, on his way to New Jersey, for the funeral I think. One of his followers did point out how dangerous it is (he kept taking his eyes off the road to speak to the camera) and told him it was a bad example to young drivers and asked him not to do it again. He won't accept me as a friend, which is a shame as I would like to introduce his followers to some alternative facts.

Zeezeek that must have been a long time ago - the English NHS has been running tariff payments for hospital services for many years. And it makes no sense to say these payments are less than market value as there is no real market other than the NHS.

Hopefully it will go smoothly. It just seems one heck of a pandora's box. If she isn't able to cope the meeting may have to divert to meet her needs and explain/reason/try to calm her. She may be asked to leave, and may or may not choose to follow that request, but the family's lawyer has already stated that is against her rights, and things could be said without her there that are wrong/inaccurate and ie grounds for them to cast doubt on whatever happens at that meeting. The meeting may have to end and report back to the judge that it wasn't able to take place. The US doctor has limited time, the meeting can't be held again and the family lawyer would protest it being re held without CY present. Potentially this could be used to play for more time.

i doubt any us hospital will touch him.

Some christian hospitals would, the poor american girl whose mother is keeping physically alive is in a catholic hospital somewhere now after other hospitals said she should be allowed to die

Soda what bit may not happen?

i wish the hearings were this week rathr than next

either way it goes the details of th meeting will be leaked and gosh wont be able to defend themselves