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

[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.

[Beskar]

...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...

Actually that choice was allowed and wasn't prevented.
As for the latter, I mentioned the Vatican Hospital scam in my post.

But there is the other point will emphasise again, Children have rights. They are not the property of their parents, they are their own persons and as such, their rights should be protected. The state has legal obligations to protect the rights of children, it is why things like child protection services exist too. In this case, the parents might have the best of intentions, but their actions would have caused their child suffering. There was no treatment, only torture. If there was treatment, the courts would have allowed the child to be moved to another country. If there was no reasonable suspicion of suffering either, they would have allowed the child to move. The state is not some cruel apparatus out to screw everyone over, even if that is your ideological belief.

The definition of Tyranny is as follows: "cruel, unreasonable, or arbitrary use of power or control."
It wasn't cruel, it was reasonable, and the decision was not arbitrary nor was the use of power or control. It was completely justified. As such, the action was not tyrannical. You may have your opinion, but this does not change the facts.

[Fisherking]

Actually that choice was allowed and wasn't prevented.
As for the latter, I mentioned the Vatican Hospital scam in my post.

But there is the other point will emphasise again, Children have rights. They are not the property of their parents, they are their own persons and as such, their rights should be protected. The state has legal obligations to protect the rights of children, it is why things like child protection services exist too. In this case, the parents might have the best of intentions, but their actions would have caused their child suffering. There was no treatment, only torture. If there was treatment, the courts would have allowed the child to be moved to another country. If there was no reasonable suspicion of suffering either, they would have allowed the child to move. The state is not some cruel apparatus out to screw everyone over, even if that is your ideological belief.

The definition of Tyranny is as follows: "cruel, unreasonable, or arbitrary use of power or control."
It wasn't cruel, it was reasonable, and the decision was not arbitrary nor was the use of power or control. It was completely justified. As such, the action was not tyrannical. You may have your opinion, but this does not change the facts.

So, you find it reasonable and justified that government prevented others form travel outside the UK and see nothing arbitrary in that decision?

Is it typical that you submit your holiday plans to a government body before travel?

It is despotic to dictate to others what they may or maynot do. Why should NHS care once they have made their pronouncement. It was cruel to deny sustenance to the child in order to assure his death. This is merely another example of “child rights” being used to control people. It is arbitrary to even think that such a decision is what is best for the child.

What you cite is governments justification in its arbitrary decision. It was only one governmental body upholding the wishes of another governmental body against the wishes of the parents.

Explain how liberty was upheld. Explain how this is not degrading treatment. Explain how there was fair trial of the facts, because it was only government judges upholding the wishes of NHS, in the absence of a jury only government adjudicates the facts.

The intervention by the NHS and the court served no one in the end. No one was going to be harmed by the child leaving the country. It turned into nothing more than government imposing its will on grieving and desperate parents and it does not present the nation in a good light.

[rory_20_uk]

So, you find it reasonable and justified that government prevented others form travel outside the UK and see nothing arbitrary in that decision?

Is it typical that you submit your holiday plans to a government body before travel?

It is despotic to dictate to others what they may or maynot do. Why should NHS care once they have made their pronouncement. It was cruel to deny sustenance to the child in order to assure his death. This is merely another example of “child rights” being used to control people. It is arbitrary to even think that such a decision is what is best for the child.

What you cite is governments justification in its arbitrary decision. It was only one governmental body upholding the wishes of another governmental body against the wishes of the parents.

Explain how liberty was upheld. Explain how this is not degrading treatment. Explain how there was fair trial of the facts, because it was only government judges upholding the wishes of NHS, in the absence of a jury only government adjudicates the facts.

The intervention by the NHS and the court served no one in the end. No one was going to be harmed by the child leaving the country. It turned into nothing more than government imposing its will on grieving and desperate parents and it does not present the nation in a good light.

Why did they wait 18 months before going? Why did Italy await an equally long time? You honestly think that transporting them by ambulance to a plane, then airlifting them to another country would at that point be helpful? Right at the start that would be OK, but by the end? This was nothing but a PR game.

As has been mentioned, the only "liberty" that they would have got in the USA is the "right" to die from lack of money.

The UK continues to have the freedom to pack one's bags and leave to wherever else in the world one wishes to live. They could have done this at the start and can do it now. They will not be missed.

[Seamus Fermanagh]

As a concomitant of the existence of the United Kingdom, a subject of the UK has no inherent rights per se. Numerous rights have traditionally been associated with UK citizenship, and those traditions have held a lot of power over the body politic. The worst despots of English history were more constrained in their use of power than were any other contemporary executives in the rest of Europe.

These traditional, albeit not constitutional, rights were subsequently spelled out in an act of Parliament. Though any act of Parliament could, subsequently, be overturned, the current electoral system strongly mitigates against the removal of this act regarding the rights of citizens in the UK.

gives UK citizens the following rights:
the right to life
freedom from torture and degrading treatment
freedom from slavery and forced labour
the right to liberty
the right to a fair trial
the right not to be punished for something that wasn't a crime when you did it
the right to respect for private and family life
freedom of thought, conscience and religion, and freedom to express your beliefs
freedom of expression
freedom of assembly and association
the right to marry and to start a family
the right not to be discriminated against in respect of these rights and freedoms
the right to peaceful enjoyment of your property
the right to an education
the right to participate in free elections
the right not to be subjected to the death penalty

These rights are more numerous that the CODIFIED individual rights of a citizen of the USA.