Alfie Evans and the end of the myth of the UK as a free country.

[Fisherking]

Alfie is not the first and I seriously doubt he will be the last victim of the NHS and the courts.

So, I am just wondering how such a flagrantly tyrannical action can be justified by its proponents.

[Husar]

Who is Alfie Evans and why should I care? Why is there no link in the OP and is this the end of traditional standards of how to properly start a thread?

https://www.nbcnews.com/news/amp/ncna869776

And listening to the parents is like letting a policeman investigate the murder of his affair when his wife is the top suspect.

From the link above:

"Our lives have been turned upside down by the intense focus on Alfie and his situation," Evans said Thursday outside Liverpool's Alder Hey Children's Hospital, where Alfie has been treated for more than a year.

He thanked the hospital staff "for their dignity and professionalism during what must be an incredibly difficult time for them too."

Apparently the father isn't angry any more, so why should I be?

This poor child was the victim of "a rare degenerative brain condition that left him with almost no brain function" and it wasn't "the NHS" or "the courts" that gave him that so I see no reason for your populist implication of how rotten "the system" is. If you want to find the rotten part of the UK, look at the financial "free market" system that places spikes in the ground so that rich dorks don't have to see the homelessness that is caused by their own greed.

https://www.independent.co.uk/news/u...r-9506390.html

[Beskar]

America loves to hate on the UK's NHS as an excuse to prop up its own failures. Despite the fact Alfie would have died over a year ago in the USA since no insurance company would fund £600 a day treatment (which would be like 5times more expensive in USA, at least) for 18 months and this was done for free. Even then, withdrawing medical intervention was nothing to do about cost, it is to do about child protection. In this case, it is protecting the child from being stuck in a machine, suffering every single day (if he can feel the pain) with no hope of any kind of treatment.

Let's completely call out the Vatican hospital scam which wanted £65,000 to stick a tube in Alfie's throat and to keep him alive for only 2 weeks which was paraded as some kind of miracle place despite them being in for a quick buck and publicity stunt at the expense of a dying child.

I am simply going to reply with Dr Dominic Pimenta's reading of the court case notes to summarise the situation. You will clearly see it is nothing to do "tyranny" in the slightest.

I am deeply disturbed by #AlderHey and #AlfieEvans case. What this tragic case desperately needs is less opinions and more facts.

Alfie was born to young parents aged 18 & 19 in May 2016, who from the court accounts delivered a happy healthy baby and coped extremely well Alfie first developed new strabismus (squint) at 2 months, as well as subtle signs of delayed development: lack of head control, sleeping all the time, not reaching for things. Alfie, now 6 months, was taken to a specialist children’s doctor, who formally documented his development was at the stage of a 6-8 week old. A MRI scan showed widespread abnormal changes to his brain, specifically the cortex (see below), which were not associated with any specific neurological syndrome but suggested mitochondrial disease. Alfie then developed a fever and shortly after seizures that persisted. He rapidly deteriorated, having short episodes of apnoea (not breathing at all), so he was moved to the Intensive care unit at #AlderHey where he has remained since Dec 2016- 15 months ventilated with a machine via a tube directly into his lungs, fed through a tube into his stomach and hydrated through tubes directly into his bloodstream. Subsequent MRI scans have shown progressive and severe destruction of the brain and brainstem, again suggestive of mitochondrial disease. Later EEGs in January 2017 (electrical tracings of Alfie’s brain) have been documented to be “essentially” flat, consistent with no upper brain activity whatsoever.

Now the human nervous system (from cortex to brain stem to spine to nerves in hands and feet and muscle) is very complex. All of the thinking that makes you YOU occurs in your cerebrum, the big squishy pink thing at the top. Imagine this as your consciousness. Much of the more basic functions that you don’t consciously think of occur in your brainstem- moving your eyes together, breathing. The spine is mostly a motorway for signals from your brain to your muscles to move things and from your skin to your brain to feel things. However there are some very basic loops that occur in the spine as well, so called primitive reflexes. These serve functions like helping us stay standing.

Returning to Alfie, the electrical tracings of his brain and images show no activity. The bit that makes him HIM is damaged beyond all repair. He may move or twitch with reflexes or seizures but this is not consciousness. Which is the key point because unfortunately, and unlike in the very similar and recent #CharlieGard case, there is no diagnosis for Alfie. No one knows what exactly is causing this progressive and destructive brain damage. The possibilities based on his symptoms point to some form mitochondrial disease- the parts of the brain cells which provide raw energy to keep those cells functioning don’t work. Very little is know about these diseases- #CharlieGard was one of only 16 cases ever identified. In court it was posited Alfie’s diagnosis may be unique and even become known as Alfie’s disease. We are beyond the limits of modern medicine here and intersected with the post-truth culture we now live in has led to protestors trying to storm a children’s hospital.

We don’t have any way to reverse brain damage. From the day you are born you lose brain cells at a rate of ~9000/day. We have no way to reverse this. If we did we could cure stroke, dementia, traumatic brain injury, Parkinson’s, multiple sclerosis, maybe even ageing itself. Characterising Alfie as having a “chance” to fight for is grossly irresponsible. Tragically his damage, whatever the underlying cause, is beyond our reach to fix. In the meantime Alfie has tubes and wires stuck into his body & undergoes uncomfortable procedures daily. From his brain activity he may not feel anything at all, but what from what we know about intensive care survivors if he can “experience” then he will be suffering.

Bembino Gesu, the Paediatric Hospital in the Vatican that has offered to take #Alfie, has not offered any “treatment”. They’ve offered to cut a small whole in Alfie’s neck so the breathing tube can be placed directly into his lungs instead of his nose, and basic hydration for €65,000. And that’s it. They’ve offered no further tests or specialists or a diagnosis. In the same way they offered to #CharlieGard without a legitimate medical basis. Bembino Gesu is also not as sterling organisation as is advertised: https://www.apnews.com/9a0647481aee487e99c9b3facf6c6691

So we are left with a tragically unwell child, likely suffering if he can feel anything at all, whose life is being prolonged artificially with no quality of life or chance of improvement. And that’s exactly why the children’s doctors and nurses at #AlderHey, who already do one of the hardest jobs in our profession, applied to withdraw the invasive support Alfie was having. And that’s why several courts and court appealed all agreed with them. This isn’t “murder” or “euthanisia” or “state control”. The state kept Alfie alive for nearly 18 months, at not a penny cost to his suffering family, and we should be immensely proud of that. And please remember #AlfiesArmy that there are other children and suffering parents in that hospital as well. You are scaring them. Go home and maybe donate your time and money to medical research if you really want to help.

Now please, read the facts before jumping upon Fox News headlines bandwagon. It is very insulting to all the skilled professionals and excellent services which did so much for Alfie, the best they could do and more.

[Montmorency]

The questions most important:

What should a system do by default?

How much can be demanded from the system for individuals' special cases?

[Fisherking]

Now please, read the facts before jumping upon Fox News headlines bandwagon. It is very insulting to all the skilled professionals and excellent services which did so much for Alfie, the best they could do and more.

Sorry, the only coverage I’ve watched on this was BBC. But just for the sake of discussion:
It is not about the quality of care provided by the NHS.
It doesn’t matter one bit what treatment he received or what his chances of recovery were. The issue here is parental rights and the right of travel.

Any parent with a child would understand their desperation and seeking slim chances but that isn’t very relevant either.

NHS is within its purview to declare it a hopeless case. That is also understandable.

The tyranny arises from the NHS court case and the court’s denial of allowing the parents or child to leave the country and pursue what ever they may choose. In effect it is a declaration that all UK subjects are property of the state.

It would not be news or even controversial had the NHS simply stood aside and allowed further events to unfold for good or ill.

By what right or authority does the bureaucracy and the courts have to deny people their own liberty and rights to make decisions which effect their own family and not the health of the nation?

[Montmorency]

Sorry, the only coverage I’ve watched on this was BBC. But just for the sake of discussion:
It is not about the quality of care provided by the NHS.
It doesn’t matter one bit what treatment he received or what his chances of recovery were. The issue here is parental rights and the right of travel.

Any parent with a child would understand their desperation and seeking slime chances but that isn’t very relevant either.

NHS is within its purview to declare it a hopeless case. That is also understandable.

The tyranny arises from the NHS court case and the court’s denial of allowing the parents or child to leave the country and pursue what ever they may choose. In effect it is a declaration that all UK subjects are property of the state.

It would not be news or even controversial had the NHS simply stood aside and allowed further events to unfold for good or ill.

By what right or authority does the bureaucracy and the courts have to deny people their own liberty and rights to make decisions which effect their own family and not the health of the nation?

We've had almost the same discussion here a year ago with the Charlie Gard case.

I think (if not, it can be shown, but for now let's say it is) that the courts and hospitals are correctly applying UK and European human rights laws as they stand.

Without revisiting the discussion on parental rights (and I'm suspicious...), answer this for me. If the Parliament promulgated the following law, would you be satisfied?

In the case of medical care for terminal patients, a parent (or caretaker more generally, in the case of the elderly) may make the final decision whether to withdraw the patient from NHS care. This could be for the purpose of letting patient die at home, or die in some other healthcare system*

*That's how I'm framing it, but you should be readily able to imagine a more neutral framing in legislation

If this provision were overriding on the state's considerations according to other law, would you feel your concerns have been mollified?

[rory_20_uk]

He was a dud and active treatment should have been stopped over a year ago. Not like the NHS has money to waste on lost causes.

[Fisherking]

We've had almost the same discussion here a year ago with the Charlie Gard case.

I think (if not, it can be shown, but for now let's say it is) that the courts and hospitals are correctly applying UK and European human rights laws as they stand.

Without revisiting the discussion on parental rights (and I'm suspicious...), answer this for me. If the Parliament promulgated the following law, would you be satisfied?

In the case of medical care for terminal patients, a parent (or caretaker more generally, in the case of the elderly) may make the final decision whether to withdraw the patient from NHS care. This could be for the purpose of letting patient die at home, or die in some other healthcare system*

*That's how I'm framing it, but you should be readily able to imagine a more neutral framing in legislation

If this provision were overriding on the state's considerations according to other law, would you feel your concerns have been mollified?

I have no problem with with parents or caretakers withdrawing a patient or even with NHS stopping treatment as hopeless. It is after all a public entity spending public money. It is indeed a replay of Charlie Gard and another case shortly afterward. The problem I see is with the NHS and the courts preventing people from pursuing their own courses of action. Be that to die at home or seek treatment outside the county. As I said earlier, it would not be news or controversial had NHS merely allowed them to go on their way. It it the interposition of the apparatus of the state, once again, that makes it a tyranny.