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We've been through this several times.

To cut to the chase, the nucleoside wasn't a treatment, it was a piece of shenanigans put up by a doctor who didn't bother to read the case notes, let alone examine the patient, whom the BMA says "has much to reflect on."

That's the polite British way of saying he is a gak bag shyster who should be thoroughly ashamed of his deeply unethical conduct.

(I just broke the swear filter again.)

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

 Steve steveson wrote:
The courts. Because it was unethical and unproven. We have been through this repeatedly.

Technically it was doctors who stopped them with a court ruling. The court just executed the law in the case presented. The courts did not bring the case, determine the facts, or create the relevant laws and expectations.

But hey, why let anything approaching common sense get in the way of a good bitch fest*

*Not direct at you Steve, but rather certain other parties


Automatically Appended Next Post:

 Kilkrazy wrote:
To cut to the chase, the nucleoside wasn't a treatment, it was a piece of shenanigans put up by a doctor who didn't bother to read the case notes, let alone examine the patient, whom the BMA says "has much to reflect on."

That's the polite British way of saying he is a gak bag shyster who should be thoroughly ashamed of his deeply unethical conduct.

Speaking of which, isn't this the kind of conduct doctors can lose their license over? Setting aside the presumptive financial gains he stood to accrue, how does one actually propose treatment without looking at the case notes, examining the patient, or their files, or even consulting the attendant physicians with a straight face?

The same way people on the internet jump to conclusions without knowing the full facts.

 welshhoppo wrote:
The same way people on the internet jump to conclusions without knowing the full facts.

Well yeah but we don't have an internet ethics board to strip someone of their internet points, so I would think a doctor would at least have a little bit more survival instinct with what he says and does.

Or is it just highly unlikely that he'd be put in front of an ethics board for this kind of thing?

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

I like how you broke it down.

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

Yeah, based on that case, the Judge had a strong argument to declare C not happening.

 LordofHats wrote:

Automatically Appended Next Post:

 Kilkrazy wrote:
To cut to the chase, the nucleoside wasn't a treatment, it was a piece of shenanigans put up by a doctor who didn't bother to read the case notes, let alone examine the patient, whom the BMA says "has much to reflect on."

That's the polite British way of saying he is a gak bag shyster who should be thoroughly ashamed of his deeply unethical conduct.

Speaking of which, isn't this the kind of conduct doctors can lose their license over? Setting aside the presumptive financial gains he stood to accrue, how does one actually propose treatment without looking at the case notes, examining the patient, or their files, or even consulting the attendant physicians with a straight face?

I don't know about the licensing itself... but, this is definitely grounds to lose your credentials to practice at a hospital. (The hospitals performs credentialing to allow MDs to admit/practice at their facilities).

 LordofHats wrote:

 welshhoppo wrote:
The same way people on the internet jump to conclusions without knowing the full facts.

Well yeah but we don't have an internet ethics board to strip someone of their internet points, so I would think a doctor would at least have a little bit more survival instinct with what he says and does.

Or is it just highly unlikely that he'd be put in front of an ethics board for this kind of thing?

I'd say it's highly unlikely. Its an experimental treatment after all.
But something tells me I doubt it was expected to go this far and go this big. Apprently he could have seen Charlie at the start of the year, long before it was blown up this big.

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

But DEATH PANELS! Government taking away choice! Parents rights! ARGLEBLARGLECTHULHUFTAGN!

Not fair. Credit to Whembly for reading the posts and thinking seriously about the issues in the round.

To get back to the case, the legal decision now revolves around the practicality of enabling the little boy to go home to die. To put it bluntly, he needs so much life support that it may be impossible to move him to a normal domestic situation as he would simply die when he got there.

Has he ever been home?

 Kilkrazy wrote:
Not fair. Credit to Whembly for reading the posts and thinking seriously about the issues in the round.

To get back to the case, the legal decision now revolves around the practicality of enabling the little boy to go home to die. To put it bluntly, he needs so much life support that it may be impossible to move him to a normal domestic situation as he would simply die when he got there.

They already said they do not think the required ventilator cannot fit the stairs or the door.
Its portable... In a hospital ward, or designed environment to fit this kinda kit.

Maybe not so domestically.
And may require a trained nurse or medical expert to monitor the machines. They need tending n monitoring, and I doubt they could train the Grads on one in a few hours.
Not quite the private family environment.

A sad situation all around and an instance where there are no bad people.

 Frazzled wrote:
A sad situation all around and an instance where there are no bad people.

Yes, but the American Doctor sounds slightly less trustworthy now given the above facts coming out.
Proposing treatments that would enrich you personally sounds less than independent medical advice.

 Frazzled wrote:
A sad situation all around and an instance where there are no bad people.

Except the American dr giving false hope and briefly the pope trying to get positive pr by pretending they could help there by negating 50 years of child sex abuse, because they offered false hope also to grieving parents.

 jmurph wrote:

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

But DEATH PANELS! Government taking away choice! Parents rights! ARGLEBLARGLECTHULHUFTAGN!

Public healthcare will kill your childrens.

 whembly wrote:

Spoiler:

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

I like how you broke it down.

I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.

I got my paycheck today and ran out the door. HAH! SUCKERS!

 Ouze wrote:

 whembly wrote:

Spoiler:

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

I like how you broke it down.

I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.

Sad thing is that's mostly what US medical System is now a for profit industry

 Ouze wrote:

 whembly wrote:

Spoiler:

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

I like how you broke it down.

I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.

I know you say that in jest...

But, I think there's this unfair perception that medical professionals (in whichever system) are mercenary for the almighty dolla.

Good luck making that argument for anyone who works in the NHS...

Oldmike wrote:

 Ouze wrote:

 whembly wrote:

Spoiler:

 d-usa wrote:

 whembly wrote:
[
Who/what stopped the parents at step C and why.

- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.

The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.

I like how you broke it down.

I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.

Sad thing is that's mostly what US medical System is now a for profit industry

Now?

The compassion and caring of the people providing care is what's keeping Americans alive. But "market based medicine" has been a thing for a very long time.

Tying reimbursement to outcomes was a good first step to solve that.

Well I do hope this American Doctor is off the UK list who we are willing to let practice in the country on rare cases.

I do believe his true colours have been flown.

 jhe90 wrote:

 Frazzled wrote:
A sad situation all around and an instance where there are no bad people.

Yes, but the American Doctor sounds slightly less trustworthy now given the above facts coming out.
Proposing treatments that would enrich you personally sounds less than independent medical advice.

Fair point. I meant the UK doctors and the parents. Good catch.

Big money is corrupting this issue. methinks.

A million raised so some want to spend it in the hope of saving the child, and charging large fees while doing so. This hasalready bee commented on.
Others who see little hope for the child might be thinking: what to do with the money raised.

Funds of tis nature are a drop in the ocean compared to medical expenditure as a whole but as far more valuable than the sum total raised because it is unattributed.

Most funding is earmarked for one project or other one department or other etc, Unattributed finding can be used for anything, and from experience of observation what a government body or charity gets unattributed funding, it tends to go on salaries. Most charity funding from major sources, for example lottery grants and constrained by what they are for. Id you are raising funds from the public for a specific goal, by law tat is where he money must be spent. Money going in rattle tins etc can be spent freely.

Great Ormond Street hospital has a rep for care of children, and it is well deserved. It also shields the charity from fair critique, though not always. There were comments in the press at how Great Ormond Street is very top heavy, with a large number of non medical personnel on fat cat salaries, media directors and RP team especially.

While they could save the child if they could, as he money has been raised and the child likely cant be saved that money may very ell disappear now and go into the bank accounts of already grossly overpaid bigwigs as bonuses.

I believe it was raised via gofundme or similar, and is in the control of the parents, not GOSH, so I'm not sure how much of what you say is applicable.

Especially as a quick Google shows that his parents have donated it explicitly to help treat other kids in the US now they've conceded that Charlie won't receive the treatment.

Good good.

I think there are a few highly-paid non-medical staff in the US healthcare industry.

 Kilkrazy wrote:
I think there are a few highly-paid non-medical staff in the US healthcare industry.

Of course, you need to invest a lot of money to know where you can cut. And those medical lawyers don't come cheap either.

It costs a lot of extra money to be so efficient.