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News

"Alfie's Army" and long term implications

309 replies

Andromeida59 · 27/04/2018 04:59

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?

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Phosphorus · 27/04/2018 05:10

You are overestimating the power influence of the mob.

There have always been people like that, the sort who bang on the sides of prison vans, and form I'll informed vigilante groups. They are just a bit thick and lacking in critical thinking.

They'll fade away, and take their ignorance and authority issues with them.

No one whose child is sick enough to be in Alder Hey is going to be in a position to put off seeking treatment.

On the other hand, it isn't a question of 'owning' a child, but until you have one, you'll never understand the unholy terror you feel at the thought of losing them.

You'll fight and rail against anyone who you perceive as a threat to that bond.

The parents are deranged by grief and fear.

There's no excuse for the idiots exploiting that for drama and an adrenaline rush.

RunMummyRun68 · 27/04/2018 05:36

They seem to have a them and us attitude

Looking down on professionals/authority. Enjoying trying to gain the upper hand. It's been embarrassing

Battleax · 27/04/2018 05:41

I think the world must look very different from the bottom than it does from the middle. The disgruntled C2DEs have become a powerful and loud voting block and we’re going to have to do better at understanding them and communicating with them, instead of calling them names and dismissing them.

I just hope nobody dies while we’re figiring it out.

SD1978 · 27/04/2018 05:42

There’s another child being lined up- this mob appeared after the death of Charlie Gard and jumped onto Alfie. There is a little girl being lined up for the next mob, from what I can see. People need drama (some people) and they don’t give a crap about the ramifications. The parents get a platform for their views, which they think is a good thing, but I really don’t know know if it is. You never hear anything about Charlie Garda parents now. How must it feel to have all this support. To not have to deal with the upcoming death of your child because you’re fighting against it, and believe that you’re right, and the medical community is wrong- and have that reinforced by the baying masses. Then you lose. You lose the case, and sadly your child- with no real opportunity to try and prepare for that because everyone is telling you it’s murder, it’s wrong, we won’t let it happen........then it does and everyone runs off to the next one. The whole situation is disgusting and these baying mobsters are the worst type of ghoul.

Battleax · 27/04/2018 05:42

See also; Brexit, Trump, UKIP...

TERFousBreakdown · 27/04/2018 06:27

Good points, Battleax!

I suspect it goes a bit further than this, even, though, and goes right to the core the zeitgeist of the digital age.

We've seen what appeared to be the democratisation of knowledge with the rise of the internet, and we're definitely seeing a focus on individual feelings over established facts. See Tumbler culture. This seems to be accompanied by an inherent distrust of experts/authority on any given subject as well as in general.

While nowhere near as tragic as dying children, I see the same broad phenomenon - the refusal to accept expert opinion, no matter how sound, if it disagrees with people's preferences - in my own line of work. I sell and deliver consulting projects to what are definitely rather the ABC1s of this world.

Point in case: one of the managers who works for me had a client threaten to sue him and the firm over his failure to deliver functionality in an IT system that simply isn't in the realm of the possible (he basically demanded something that would have dependent on the system being able to give an accurate hour-to-hour weather forecast 5 years in advance). Much drama ensued when my employee, quite rightly, insisted this wasn't going to happen and the matter was only settled when myself and my own boss intervened with his. That client is reasonably young but has an LLM and a lower management job in a client corporation, so definitely doesn't qualify as underprivileged or uneducated in any sense of the word. And while his example is extreme, the general pattern of behaviour is becoming more frequent.

IMO there may be an issue of people simply not being capable of dealing with the amount of information at their fingertips and not being able to discern meaningfully what is reasonable, qualified opinion and what isn't. And therefore defaulting back to emotional preference as a means of dealing with conflicting information. I tend to take the view that we need to place a lot more emphasis on teaching critical thinking skills - as in assessing the quality of information, weighing up evidence, etc. - as well as emotional resilience against feelings of helplessness or even uncertainty (which seems to completely floor many folks).

And, no, I have no idea how to go about something like this.

Battleax · 27/04/2018 06:30

We've seen what appeared to be the democratisation of knowledge with the rise of the internet, and we're definitely seeing a focus on individual feelings over established facts. See Tumbler culture. This seems to be accompanied by an inherent distrust of experts/authority on any given subject as well as in general.

Yes, there’s a lot of truth in that. What a mess we’re in.

Battleax · 27/04/2018 06:36

That client is reasonably young but has an LLM and a lower management job in a client corporation, so definitely doesn't qualify as underprivileged or uneducated in any sense of the word. And while his example is extreme, the general pattern of behaviour is becoming more frequent.

I suppose that demonstrates the other key point, which is that we’re actually more dependent on expertise than ever. There’s so much more tech, so much more law, so much more medical possibility and general complexity now than there was even twenty years ago.

So we need experts more than ever, but they’re resented too.

MotherforkingShirtballs · 27/04/2018 06:38

You never hear anything about Charlie Gards parents now

I would imagine they're tucked away together somewhere, privately grieving and coming to terms with the loss of their son in peace, away from the baying mob. It must be very hard for them to see the AE case in the news and all over social media particularly the implications from some of the more rabid members of the Army that they gave up and that a real parent keeps fighting.

meditrina · 27/04/2018 06:39

There's been a fair amount of discussion about the role of social media in gang culture and the rise in stabbings and shootings.

(i think that's a better comparison than electioneering, because it's about how groups create, develop and behave - rather than general political discussion which has a spectrum of views/sites)

MaisyPops · 27/04/2018 06:43

We've seen what appeared to be the democratisation of knowledge with the rise of the internet, and we're definitely seeing a focus on individual feelings over established facts. See Tumbler culture. This seems to be accompanied by an inherent distrust of experts/authority on any given subject as well as in general
It's so true and sadly this has been actively stirred up by politicians who seem to want to spend a lot of time making soundbites and trying to stir up anger.

It makes me think of how many click bait like things are on facebook where they get a photo of a child with tubes and machines plugged in and then it's captioned 'if I get 10,000 likes i can go for life saving treatment'. When you read the comments it's full of 'thoughts and prayers' comments but quite a bit of hate towards medical staff.
Then again, political debate seems to be becoming increasingly combative, anti-expert and divisive with its rhetoric.

meditrina · 27/04/2018 06:43

Point in case: one of the managers who works for me had a client threaten to sue him and the firm over his failure to deliver functionality in an IT system that simply isn't in the realm of the possible

We saw this a lot on MN when a group of posters were disbelieving of the tech limitations of a 'porn be gone' unicorn button, and kept accusing those with tech expertise of being porn fans who weren't trying hard enough because they didn't care enough.

And MN is a site with a higher proportion of graduates than the typical population. So I wouidn't rush to peg the phenomenon to educational level.

TERFousBreakdown · 27/04/2018 06:45

There's been a fair amount of discussion about the role of social media in gang culture and the rise in stabbings and shootings.

Yes, that, too!

I also wonder about the impact of people creating - I rather suspect accidentally rather than on purpose - social media echochambers. Which does rather seem like the modern, mass-produced version of a 17th century despot being able to surround himself with a gaggle of yes-men.

Battleax · 27/04/2018 06:48

The thing about echo chambers is they’re so comfortable and reassuring. They’d be less so if people were fully aware of the extent to which they’d constructed them around themselves. As with the yes men, you have to believe in the genuine agreement to enjoy it.

Andromeida59 · 27/04/2018 06:51

I agree absolutely @Battleax. I think what we're seeing now is a continuation especially of Brexit as the language is so similar "standing up, taking back, freeing". Instead of reasoned, logical arguments there is just wild speculation and abuse. I honestly never thought I'd see the day that a children's hospital is under threat from protesters.

I've also seen pictures of a new child making the rounds so they are likely to be the new campaign target as soon as AE has died.

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Ifailed · 27/04/2018 06:53

there will always be some people who want to be the centre of attention and will jump on any band-wagon, shouting

"look at me, look at me, I care more about Alfie/Charlie/current side-show than you do!"

MaisyPops · 27/04/2018 06:59

the language is so similar "standing up, taking back, freeing". Instead of reasoned, logical arguments there is just wild speculation and abuse. I honestly never thought I'd see the day that a children's hospital is under threat from protesters.
Me neither.

But I think other posters are spot on, people create echo chambers and then become hostile and angry if anyone says anything different, so people with more moderate views don't get involved.

A friend shared a great thread online which walked through the tragic AE case and despite the thread saying it's clearly tragic, but it doesn't justify some of the claims of state-sponsored child murder, there were still the same old angry comments.

Undercoverbanana · 27/04/2018 07:04

Perhaps they’ll all go and hurl abuse at The Donald when he arrives.

SisyphusHadItEasy · 27/04/2018 07:05

I have children with mitochondrial disease. They are all affected to different degrees, and I have it myself.

I have lost a child to mitochondrial disease. I understand the cascade failure all too well.

I feel (and please, no flaming - I have walked this path) that social media is the single most dangerous element in this equation.

Battleax · 27/04/2018 07:08

That makes perfect sense sisyphus. (What an exhausted sounding NN).

I’m sorry for your loss.

totteringlump · 27/04/2018 07:08

I don’t think anyone would flame you for that.

MaisyPops · 27/04/2018 07:09

Undercoverbanana
Protesting, great.
Hurling abuse, defeats the point in my opinion (much as I think some.of the abuse to him would be funny).

SisyphusHadItEasy
Sorry to hear about your story.
I agree on the social media front. It's very easy to whip up mob mentality.

Andromeida59 · 27/04/2018 07:10

So sorry @Sisyphus but absolutely agree with you. Xx

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Notthatwomanagain · 27/04/2018 07:10

What happens to all the money that gets raised? Given in neither case it has been used for the intended purpose of travel, does it get donated to the children’s hospital who have endured so much?

Has there ever been a statement about the huge CG fund that was crowdfunded?

IceBearRocks · 27/04/2018 07:10

The idiots will be lining up in A&E when thier child has a massive trauma!!!! Do you think they'll at to the ambo...excuse me can we just divert to Manchester??
My SIL works in AH and she's been terrified going to work and been very anxious.
They've now moved on to two children with Battens disease in Liverpool who have been in a trial drug but the government are refusing to fund for the drug ...not AH....
They've talked about the odd negligence case but no answer be has mentioned the millions of children AH has saved!!!!
SIL at's in AH parents go home overnight and lace critically ill children with Nurses.
I've a disabled child and spend lots of my life in a children's ward but I'd never leave them. I'd never expect a nurse to change a happy or feed him....when. A child is in hospital the nurse should only do what the parent is not capable of...eg IVs etc..... But it seems people have an expectation of overworked staff!!!

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