Posted on Jul 27, 2017
Right Angle - Charlie Gard: Enemy of the State (07/25/17)
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How would you feel if anyone - a hospital, government agency, court - stood between you and a chance, even a remote chance, of providing care for you or your sick child? I would never accept it.
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The government ran the clock out on him. They drug their feet and refused them the opportunity to help their son. Time was of the essence in making a difference for them and they knew it.
They raised the money and were denied for no really good reason other than the state didn't like the odds. How does that make everyone feel? The state didn't like the odds so you are denied treatment even when willing to pay for it yourself.
They would have had to try a raid on the hospital as it is my understanding the hospital wouldn't even let them take him out of it thus preventing them from being able to flee the country.
They raised the money and were denied for no really good reason other than the state didn't like the odds. How does that make everyone feel? The state didn't like the odds so you are denied treatment even when willing to pay for it yourself.
They would have had to try a raid on the hospital as it is my understanding the hospital wouldn't even let them take him out of it thus preventing them from being able to flee the country.
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PO3 Donald Murphy
It didn't quite pan out like that. Great Ormond is the top children's hospital in the UK, possibly the world. If they can't help you, then you're up a creek. So when an American doctor or two (and later an Italian) all claim to have a wonder treatment/method/cure then what would you honestly expect Bethesda or the Shriners to say? You'd say "lets see it." At numerous occassions, the docs were invited over, but due to some special formulation, their medicine doesn't work outside of the USA. Amazing, that...
Next, you have the same thing in the USA. You and I cannot stay on life support forever. Well, ya can if your policy says so. Little Charlie's doesn't (also Terry Schiavo in Florida).
So what does your policy state? Also keep in mind that we're dealing with a condition from which no one has survived. So as your policy administrator, whats in the best interests? Do we keep the child in pain so we can "watch him die" or do you lovingly pull the support?
Thats a tough call. I'll give you that.
Next, you have the same thing in the USA. You and I cannot stay on life support forever. Well, ya can if your policy says so. Little Charlie's doesn't (also Terry Schiavo in Florida).
So what does your policy state? Also keep in mind that we're dealing with a condition from which no one has survived. So as your policy administrator, whats in the best interests? Do we keep the child in pain so we can "watch him die" or do you lovingly pull the support?
Thats a tough call. I'll give you that.
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Cpl Jeff N.
PO3 Donald Murphy
There is a lot incorrect in your understanding of what just happened.
GOSH might be the top children's hospital in the NHS. Keep in mind there are both private and NHS facilities in England. Private is almost always better than the NHS. My wife is a brit so we know a little about the NHS.
For the condition Charlie had there were far better experts outside of GOSH, that is just a fact. It doesn't shame anyone to admit they are not the experts at everything. There are children that, with early treatment, have survived the condition he had, that is just a fact on which you are incorrect.
The difference in the Shaivo case is her husband wanted to remove her feeding tube, her parents did not. She was starved to death by having her feeding tube removed after a long court case. That happened here where I live. it is not even in the same realm as Charlie Gard.
There is a lot in end of life care. If you have a living will that spells out how you will or will not be treated. Absent that, your next of kin or someone you have designated can make that decision for you. Insurance companies and hospitals don't get to end your life. You may be moved to a long term care facility but your living will or family members make the decisions if you cannot.
To your question above "So as your policy administrator, what's in the best interests? Do we keep the child in pain so we can "watch him die" or do you lovingly pull the support?"
This should be the parents call but in England the NHS makes the call for you because the government controls and doles out healthcare. The parents raised 1.5 million for private treatment outside the UK too and had doctors ready to help. They dragged their feet long enough that care was no longer an option.
There is a lot incorrect in your understanding of what just happened.
GOSH might be the top children's hospital in the NHS. Keep in mind there are both private and NHS facilities in England. Private is almost always better than the NHS. My wife is a brit so we know a little about the NHS.
For the condition Charlie had there were far better experts outside of GOSH, that is just a fact. It doesn't shame anyone to admit they are not the experts at everything. There are children that, with early treatment, have survived the condition he had, that is just a fact on which you are incorrect.
The difference in the Shaivo case is her husband wanted to remove her feeding tube, her parents did not. She was starved to death by having her feeding tube removed after a long court case. That happened here where I live. it is not even in the same realm as Charlie Gard.
There is a lot in end of life care. If you have a living will that spells out how you will or will not be treated. Absent that, your next of kin or someone you have designated can make that decision for you. Insurance companies and hospitals don't get to end your life. You may be moved to a long term care facility but your living will or family members make the decisions if you cannot.
To your question above "So as your policy administrator, what's in the best interests? Do we keep the child in pain so we can "watch him die" or do you lovingly pull the support?"
This should be the parents call but in England the NHS makes the call for you because the government controls and doles out healthcare. The parents raised 1.5 million for private treatment outside the UK too and had doctors ready to help. They dragged their feet long enough that care was no longer an option.
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PO3 Donald Murphy
Cpl Jeff N. - 1. You - "GOSH might be the top children's hospital in the NHS. Keep in mind there are both private and NHS facilities in England. Private is almost always better than the NHS. My wife is a brit so we know a little about the NHS."
My wife is a Brit too. Both of us have UK medical plans. Wife NHS - me, private.
Private was consulted as well. Everyone in the UK (as per stories I watched live) was consulted. An Italian doctor (as per BBC) even offered to assist.
2. You - "For the condition Charlie had there were far better experts outside of GOSH, that is just a fact. It doesn't shame anyone to admit they are not the experts at everything."
****And again, NONE of these "experts" were willing to visit Charlie. Also - again - GOSH at no point denied anyone access early on. Most if not all news outlets publish the following condition blurb:
"Very few people who develop the condition in infancy survive to their teenage years, and there is currently no known treatment for it. One of the reasons for the lack of research is due to the rarity of the condition – only a few dozen children on the planet are currently diagnosed with it."
So again, no one said "we know everything and therefore aren't letting anyone else
treat/look at him."
3. You - "There are children that, with early treatment, have survived the condition he had, that is just a fact on which you are incorrect."
****Define "survive". Will your medical plan allow you to be on life support for an
extended amount of time? Also note that barring a link to an interview, whenever a doctor outside of the UK makes that statement, the BBC or GOSH or someone here on RP
will say "can we talk to anyone that has it?" A family name will come up and the source of that information will almost always be The Sun which is England's equivalent of the National Enquirer (as you may know) or some equally lucrative media source.
4. You - "The difference in the Shaivo case is her husband wanted to remove her
feeding tube, her parents did not. She was starved to death by having her feeding tube removed after a long court case. That happened here where I live. it is not even in the same realm as Charlie Gard."
****It is in the same realm. A court (government) decided her fate. A court is deciding Charlie's fate. The same thing the Brit medicine haters feel never happens in the USA. I live in Florida too.
5. You - "There is a lot in end of life care. If you have a living will that spells out how you will or will not be treated. Absent that, your next of kin or someone you have designated can make that decision for you. Insurance companies and hospitals don't get to end your life. You may be moved to a long term care facility but your living will or family members make the decisions if you cannot. To your question above "So as your policy administrator, what's in the best interests? Do we keep the child in pain so we can "watch him die" or do you lovingly pull the support?" This should be the parents call but in England the NHS makes the call for you because the government controls and doles out healthcare."
****That would be a death panel, wouldn't it? And if it were truly a death panel, then the fact that few have survived, would have meant that they would have pulled his plug long ago, yes?
6. You - "The parents raised 1.5 million for private treatment outside the UK too and had doctors ready to help. They dragged their feet long enough that care was no longer an option."
****On July 13, the doctor stated that not only had he not visited GOSH to examine
Charlie, but in addition, he had not read Charlie's contemporaneous medical records or viewed Charlie's brain imagine or read all of the second opinions about Charlie's condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge's decision made on April 11. Further, GOSH was concerned to hear the professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since July 13 gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie. (metro.uk)
Now as we've debated before both one on one or me with other RP'ers, my English father in law has care needs that are kind of similar to Charlie's in that they are a hopeless cause. Hopeless because dad refuses to do what he needs to do to regulate/maintain his diabetes and that leads to seizures, costly hospitalizations, etc. Yet, NHS dad gets the top care he needs. A baker by trade, he retired with the bare minimum pension that you can get and still claim to get a pension. Yet, no death panels threaten him (tho we'd like them to!) and at no time is he told that he can't get care. In fact, he even pulls himself out of hospital when he feels he no longer needs to be there. Now I'm not going to guess what type of policy Charlie has. I have UK care but its not NHS. Charlie may have a private plan, he may not. I don't know. I also know that Charlie's story surfaced right before a brutal national election where half of the government feels that the UK system is world-class and the other half feels the UK system is dying and on its last legs.
Additionally, these stories appear here every time America starts to re-evaluate its care system. Folk like David Crosby will appear and anonymous English doctor, etc. So the fact that Charlie is "having the problems he's having" should tell anyone who watches Britain regularly that there is a background to the story that is not being told. I'll stand by that until told otherwise.
My wife is a Brit too. Both of us have UK medical plans. Wife NHS - me, private.
Private was consulted as well. Everyone in the UK (as per stories I watched live) was consulted. An Italian doctor (as per BBC) even offered to assist.
2. You - "For the condition Charlie had there were far better experts outside of GOSH, that is just a fact. It doesn't shame anyone to admit they are not the experts at everything."
****And again, NONE of these "experts" were willing to visit Charlie. Also - again - GOSH at no point denied anyone access early on. Most if not all news outlets publish the following condition blurb:
"Very few people who develop the condition in infancy survive to their teenage years, and there is currently no known treatment for it. One of the reasons for the lack of research is due to the rarity of the condition – only a few dozen children on the planet are currently diagnosed with it."
So again, no one said "we know everything and therefore aren't letting anyone else
treat/look at him."
3. You - "There are children that, with early treatment, have survived the condition he had, that is just a fact on which you are incorrect."
****Define "survive". Will your medical plan allow you to be on life support for an
extended amount of time? Also note that barring a link to an interview, whenever a doctor outside of the UK makes that statement, the BBC or GOSH or someone here on RP
will say "can we talk to anyone that has it?" A family name will come up and the source of that information will almost always be The Sun which is England's equivalent of the National Enquirer (as you may know) or some equally lucrative media source.
4. You - "The difference in the Shaivo case is her husband wanted to remove her
feeding tube, her parents did not. She was starved to death by having her feeding tube removed after a long court case. That happened here where I live. it is not even in the same realm as Charlie Gard."
****It is in the same realm. A court (government) decided her fate. A court is deciding Charlie's fate. The same thing the Brit medicine haters feel never happens in the USA. I live in Florida too.
5. You - "There is a lot in end of life care. If you have a living will that spells out how you will or will not be treated. Absent that, your next of kin or someone you have designated can make that decision for you. Insurance companies and hospitals don't get to end your life. You may be moved to a long term care facility but your living will or family members make the decisions if you cannot. To your question above "So as your policy administrator, what's in the best interests? Do we keep the child in pain so we can "watch him die" or do you lovingly pull the support?" This should be the parents call but in England the NHS makes the call for you because the government controls and doles out healthcare."
****That would be a death panel, wouldn't it? And if it were truly a death panel, then the fact that few have survived, would have meant that they would have pulled his plug long ago, yes?
6. You - "The parents raised 1.5 million for private treatment outside the UK too and had doctors ready to help. They dragged their feet long enough that care was no longer an option."
****On July 13, the doctor stated that not only had he not visited GOSH to examine
Charlie, but in addition, he had not read Charlie's contemporaneous medical records or viewed Charlie's brain imagine or read all of the second opinions about Charlie's condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge's decision made on April 11. Further, GOSH was concerned to hear the professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since July 13 gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie. (metro.uk)
Now as we've debated before both one on one or me with other RP'ers, my English father in law has care needs that are kind of similar to Charlie's in that they are a hopeless cause. Hopeless because dad refuses to do what he needs to do to regulate/maintain his diabetes and that leads to seizures, costly hospitalizations, etc. Yet, NHS dad gets the top care he needs. A baker by trade, he retired with the bare minimum pension that you can get and still claim to get a pension. Yet, no death panels threaten him (tho we'd like them to!) and at no time is he told that he can't get care. In fact, he even pulls himself out of hospital when he feels he no longer needs to be there. Now I'm not going to guess what type of policy Charlie has. I have UK care but its not NHS. Charlie may have a private plan, he may not. I don't know. I also know that Charlie's story surfaced right before a brutal national election where half of the government feels that the UK system is world-class and the other half feels the UK system is dying and on its last legs.
Additionally, these stories appear here every time America starts to re-evaluate its care system. Folk like David Crosby will appear and anonymous English doctor, etc. So the fact that Charlie is "having the problems he's having" should tell anyone who watches Britain regularly that there is a background to the story that is not being told. I'll stand by that until told otherwise.
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Sir, you have to ask why first? Why would the State do this? Why did the experts do this? It has nothing to do with money being raised or parent rights. You have no rights. The State and its Techonocrats have decided this for you. Read Dr. Ezekiel Emanuals policy on Complete Lives System. He is the architect of the Affordable Care Act. Each life is given a value determined by how much you paid into the system. We have the same system here as in Britain. They (State) were never going to allow that child to vary from what their experts have deemed a baby's life to be valued at because it would upend the system made for us. This is the reason politicians here in the US praise ObamaCare but do not use it themselves. An 80 yr old man with a brain tumor would not be allowed to have a surgery to prolong his life. Remember Mr. Obama when he recommended that a grandmother take a pain pill rather than receive an expensive surgery. It's on YouTube. But Senator John McCain certainly can have any surgery because he is labeled as more important than you and I, or it is known as an Alpha Plus individual. Americans have been sold a bag of horse squeeze but the politicians told them it was gold. Just like the Social Security "Lock Box" that Al Gore tried to sell the American public on, our health care system is built on empty promises by politicians that utilize a completely different medical system.
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We'll never know what the outcome would have been if at the time of diagnosis the physicians at GOSH had consulted with researchers to explore whether a trial of investigational therapy might be of benefit. That's what I'd have wanted for my own child. Just because 'this hospital' or 'that hospital' is one of the 'top hospitals' in the world does not mean that they have true expertise in every area of medicine. I'd imagine that the chaplains at GOSH are working overtime to address the emotional and spiritual needs of the medical staff who also need to work through this loss.
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