"Alfie's Army" and long term implications

[Andromeida59]

I think that there has been so much scaremongering around the hospital and expertise of the medical professionals that I genuinely feel that this will put some of from having their children treated because of the mass hysteria created around this case.

I have been gobsmacked by so much that I've seen around the Alfie Evans case. Personally, I don't think I've ever seen such rabid paranoia and conspiracy theories (lethal injections, Big Pharma, organs for cash etc.). I'm also trying to understand the mentality behind "Alfie's Army". I think what started off as well intentioned "thoughts and prayers" etc. has now escalated in to something that even the family will not be able to control. I also think it's only a matter of time before the "Army" turn on the father.

I do think that hospitals make mistakes and of course medical professionals will not always be right but there seems to have been an escalation in animosity since the Charlie Gard case. I think that next time a case of this type occurs, the outcome could be far worse because who would have imagined we would have seen protesters attempting to "storm" a children's hospital?

Also, really don't understand the "the child belongs to the parents ergo it's up to the parents to do what they want" attitude. I'm not a parent (and I don't think being a parent suddenly endows parents with a wealth of medical and legal knowledge) but surely people understand that children do not "belong" to them?

[BigChocFrenzy]

In this grey area, other countries decide to leave it to the parents to decide
It is the UK which decides parents should not have this rights

I can see in the future how the NHS could end:
the alliance of the conservatives who don't want to pay taxes to benefit other people,
together with the angry, alienated section of the working class who want to "take back control"

It worked pretty well for Brexit
and we can see it ramps up the conservative party vote, despite the gross incompetence of this government.

imo, if the professional mc continue to walk over walking class opinions so arrogantly and contemptuously I expect to see angry & aggressive populism make further inroads into British politics.
Maybe a British Trump within 10 years or so

Or maybe we could just listen, to ordinary people and to other countries too

[lettuceWrap]

But Bigchoc, the populist views of ordinary people you are talking about in your previous post are often to my mind NOT the views of the ordinary of this country, they are the extremist views of a highly politically active minority (typically with right wing, strongly religious bias), agitating British public opinion from afar to their own ends... for example right wing, pro life, pro gun and pro death penalty, anti vaccine, anti LGBT campaigners.
They shout very loudly about taking control, making up your own mind, doing your own research, ending state control, exercising their rights... it’s all about letting them make their own choices (but at the heart of that, fundamentally it’s about denying other people their rights and choices).

And on top of all that, we’ve got bot farms (Russian and other), shit stirring all across social media on any topic they think they can use to increase societal divisions and hype up resentment.

Poor AE and his family have definitely been caught up in all of that.

[Spero]

This is why I have problem with the 'best interests' test in cases of terminally ill children -

"Parents ‘rights’ when they argue between themselves about what is best for their child, are utterly subsumed into the idea of the ‘welfare of the child’. This principle was firmly and clearly restated by the Supreme Court in B (A Child) [2009] UKSC. See the judgment of Lord Kerr at para 37 :

… All consideration of the importance of parenthood in private law disputes about residence must be firmly rooted in an examination of what is in the child’s best interests. This is the paramount consideration. It is only as a contributor to the child’s welfare that parenthood assumes any significance. In common with all other factors bearing on what is in the best interests of the child, it must be examined for its potential to fulfil that aim"

It would not I think be much of a legislative upheaval to make a distinction between arguments between those that hold parental responsibility or between those who hold PR and those who don't - doctors, social workers etc.

I think 'significant harm' should be the test for the latter.

[BigChocFrenzy]

My opinion is that this is basically a grey moral issue, not a medical one
and that since other countries allow parents to decide in such cases, the Uk legal & medical authorities should reconsider their position

This case highlights how the mc professionals express their version of nationalist arrogance:
the Uk state is right; everyone who disagrees is wrong - including other countries - and British subjects must obey the state

[SouthWestmom]

So 'significant harm' for what doctors etc are proposing and 'best interests' for parental responsibility?

I don't think we need a change. If we are talking about safeguarding risk of significant harm comes into play and that would happen if you were thinking an ill child should be taken into care , if not then what is in someone's best interests encompasses a lot of factors.

In this case, much as there was a lot of noise, the legal decisions were clear.

[BigChocFrenzy]

lettuce In the FPTP voting system, the typical Conservative supporters, plus the increasing number of angry wc voters who have switched from Labour, are ever more likely to win a majority

This increasingly important constituency that many here sneer at were large enough to keep May in power last GE.

The Tories are winning over the traditional working class, just like Trump did
An unscrupulous populist politician , the British Trump, could easily take over the Tory party, with its small membership and be be elected at the following GE, especially in a chaotic post-Brexit country.

Of course Russian bots, Legatum, Cambridge Analytica and every media-owning oligarch are piling on ever more sophisticated propoganda.
That's all part of the problem and we have to realise that will continue.

We need to decide very carefully which issues are so important that we risk letting populism in the door.
Clinton would probably have won the electoral college, not just the popular vote, if she hadn't been so sneering about guns & god and accepted these are important to a sizeable section of wc voters.

[meddie]

Michael mylonas the QC is on twitter and discussing aspects of this case. Seems there was a lot of influence from a pro lifer called Christine Broesamle who basically interfered and prevented mediation with the family. She believed that the hospital had caused Alfies condition and was advising and influencing the family. no wonder the relationship was difficult and a consensus was not agreed.

[nolongersurprised]

in such circumstances, I would wish for my family ... to do with my carcass whatever made it easier for them

Like the child Jahi McGrath in the US? Who is now 4 years or so into home ventilation (trache) and hasn’t been responsive since but who has gone through puberty and commenced menstruation? That family are also deeply religious and a waiting for a miracle.

At which point would your relatives’ memories of you alive and vibrant be overtaken by, “Oh no, another visit to Italy to visit aunty’s immobile, bloated body?”.

Refusal to accept a death is pathological grief but the treatment shouldn’t be to ventilate a corpse with a beating heart.

[Charolais]

I’m in the U.S. & Americans who do not want universal healthcare have jumped all over this. They believe the NHS did not want to spend money treating a sick child and so wanted to quit treatment just to save money & the parents were poor and couldn’t afford private care which would have treated him. They believe Italy could make him better!

[Charolais]

nolongersurprised I have been following the Jahi McGrath story as well and I find it shocking they won’t let their child rest in peace. They believe as long as she is warm and has a heartbeat she is alive.

With all these case, including the Terri Schiavo case, they video tape involuntary movement and present it as proof the person is responsive.

[nolongersurprised]

I suppose with AE his parents had no experience of him being independently mobile, vocalising etc so “being warm with a heart beat” was their normal for their son. Plus seizures.

I find it macabre myself, warm and growing bodies with nobody inside.

(AE may well not have grown if his hypothalamus and pituitary gland were also destroyed).

[justicewomen]

This is a very good blog addressing many of the issues raised here quillette.com/2018/04/28/tragic-case-alfie-evans/

[CocoaGin]

I think we need far tighter controls on the privacy that these children deserve. I felt horridly uncomfortable seeing photos and videos of both Alfie Evans and Charlie Gard. Anyone with a trained eye could see how desperately ill those children were, yet their faces were behind desperate and hopeless social media campaigns, and even more heinously for raising money. Where has the £1 m + gone that the Gards raised, and is anyone accounting for it?
We have a duty to protect these children, maintain their privacy and dignity and by doing so, will also stop the mob mania.

[GnotherGnu]

Do insurance companies in the US (or indeed elsewhere) normally agree to indefinite ventilation for people in AE's position? Given the costs involved it seems surprising.

[derxa]

www.standard.co.uk/news/uk/charlie-gard-parents-we-have-watched-alfie-evans-case-unfold-with-heavy-hearts-a3825856.html

[DontDrinkDontSmoke]

I’m in the U.S. & Americans who do not want universal healthcare have jumped all over this. They believe the NHS did not want to spend money treating a sick child and so wanted to quit treatment just to save money & the parents were poor and couldn’t afford private care which would have treated him. They believe Italy could make him better!

I found myself posting on a US fb friend’s page as the things they were posting as fact were way off the mark.

I’ve stepped away now as you can’t argue with stupid.

According to them, the decision not to move AE was a government one and AE’s father was forced to make statements towards the end to appease the hospital.

I’ve stepped away now.

[DontDrinkDontSmoke]

...but not before a Trump supporter set up an “Alfie’s Law” petition. There were no signatures when I last looked.

[mirime]

@CocoaGin Untrained eye here and the few pictures/videos I saw of AE did not show a healthy child to me (or one responding to anything). I also felt uncomfortable seeing them and didn't actually seek them out.

@nolongersurprised I have occasionally looked up the Jahi McMath case and read that at least one person who had provided care for her disputed her family's claims that she was menstruating. Another tragic case - I feel sympathy for all involved, but particularly the other children in the family.

[Seafoodeatit]

www.bbc.co.uk/news/health-43898972 sorry if this article has already been shared but I just saw it but it raises the point many have been raising on this thread.

[PerfectlyDone]

Actually nobody with any money would have any sense if they let their family be treated by the NHS full stop. Why on earth would you use a second rate service with shitty outcomes when you’re a short hop from far superior health services in Europe.

While I know nothing about Mucky's previous posting history or experiences, I very strongly disagree with the sentiment expressed here. Both as a HCP and a patient and a mother of children, one of which has a recurring tumour problem, with experience of private and NHS health care, I would only ever consider private care for something simple (i.e. sore knee, needs an arthroscopy/MRI or something). If I or mine were seriously ill? NHS every time. For its failings, which I am not blind to.

Interesting further discussion about the social aspects of it all.
About 20 years ago somebody I worked with in A+E predicted after a particularly wild night with drunken assaults etc that in years to come there would be hordes of unemployed, disenfranchised, perpectiveless young men roaming the country, robbing and pillaging as they went along, as they had no other position in society. He was exaggerating for dramatic effect, but I think there is something to it.

Religion is just absolutely toxic in cases like this and that is all I am going to say on the subject .

In the US there are several cases that I know of of critically ill and/or braindead people being ventilated at home, sometimes for years. I find that abhorrent and would not want it for myself or my loved ones. And I don't think that being a parent or a spouse or a sibling ought to give you the power over deciding whether to continue with life prolonging treatment like this or not - by definition emotions will be involved which will skew decision making.

Just because we can do something, does not mean that we should or that we'd be negligent if we did not.
Sadly and very very unfairly, some children are dealt a horrific hand and they and their families suffer like I cannot even imagine. I don't think that an existence = life; a life is so much more. And nature is utterly, utterly indifferent in what we think is 'right' or 'wrong' or 'a grey area', so indifferent cell division affected by a myriad of things, biochemical imbalances, other factors that we have no idea about yet can lead to the birth of a hopelessly ill child.
It is a grave duty of all those looking after these children to care, nurture and protect them - IME sometimes even against their families' best intentions.

I was so saddened to hear of Alfie's demise and I wish his parents strength and light.

[PerfectlyDone]

Oh gosh, that was long

[meddie]

@Charolais I’m in the U.S. & Americans who do not want universal healthcare have jumped all over this.

Where they also jumpng all over the Israel Stimpson case? Because its almost the exact same scenario and its not socialised medicine there. Would be kind of hypocritical if they weren't