"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?

sticky The poster divided people who will take up opportunities and get on, and those who will take the piss. There are many reasons people don't get on. I am not a great fan of reducing complex social issues to a simple solution.

MightyMucks You are right that someone rich could have taken their child abroad and kept him on a ventilator potentially for years until he died. There are people from rich families in the US in that position.
But no the child would not be cured or get better in any way. Sometimes the issue is not money.

Some very thought-provoking points of view on this thread. Really worth reading.

crunchymint - interesting post about power and influence
PerfectlyDone - also making me think about the wider picture.MadameGrizzly - a depressing but not unrealistic view of the longer term role of SM
And Terf - yes - I agree about the quick-fix attitude
Birdsgottafly - it was very sad to read what you say about Liverpool and the hopelessness of some people there.

And I do agree that as the breakdown of social groups in "real life" continues - (The Village) - we seek to find our own "tribe " or "community" - and SM allows us to do that by selecting people who are just like us - or who we think are just like us.

I live in a fairly wealthy London borough - although not rich myself - and I work one day a week in a poor one - and it's a different world even though effectively the geographical boundary between the two is simply a main road.

Mightymucks - the (very) wealthy people I know who have needed expert medical care head for the NHS. The only times they might use their wealth is in procuring private rooms/additional equipment/additional therapies.

I have no idea whether I am 'right'.

I do know close up what intensive care looks like, I know what it can and cannot do, I do know what suffering looks like, I have 25+ years experience of talking to people and given Bad News.

The reason I could not hack a career in paediatrics was because a. I cannot stand seeing children dying and b. I found it very difficult to be an advocate between the child and the parents when there are very clearly situations in which parents do NOT not know best (and even at times do not have their child's best interest at heart. I am not saying this is the case here or was with CG).

I am sorry you re so mistrustful of NHS care.

Paid for medicine around the work can be marvellous, yes, but also does untold harm, when vulnerable and desperate people are treated as 'customers' and as long as they can pay whatever they want will get done. It can be absolutely awful and no way should a dying child be subjected to this simply to appease even their parents' suffering. IMO.

I may be wrong.

I agree with you, PerfectlyDone.

It's been interesting on Twitter (I don't do Facebook). I've seen a few tweets from the US. They simply can't get their heads round the idea that the parents' view will not prevail, automatically. Am I right in thinking that the US is almost the only country in the world that has never signed the UN Declaration of the rights of the child? I wonder if that's connected.

If anyone knows how a case like this would be handled in the US, I'd be most interested to hear about it. Surely there must be a mechanism to insist that a child gets lifesaving medical treatment even if the parents are saying no? E.g. a blood transfusion for a child of Jehovah's Witness parents, where no alternative treatment will save the child's life.

crunchy, the poster was me!

I was not referring to a specific group of people (and got the impression you thought I was). Anyway, I should have pointed out that I was speaking from a phylosophical point of view of humanity in general, not about AA or any other specific case group.

My wider point was about how to avoid this 'us and them' mentality in future and in general. What I was saying is that I am all for a Star Trek future for humankind, I just cannot see it happening because we all are, well, human.

But the thread as moved one. As you were.

The U.S. signed but didn't ratify.

The insistence on parental rights sounds good when looked at from the point of view of a "good father" or a "loving mother" - and many of us arguing on here believe ourselves to be that. Certainly the memebers of these "armies" thought that loving parents could not be wrong. There is also the view that we would do anythign to help our child - because that;s how we feel.

But - just look at the number of threads on here from people who hate their parents, who blame their bullying and abusive fathers and narcissistic mothers for damaging them. How many women hate their mother in law and believe her to be an evil woman who shouldn't be allowed near children? Yet all those parents thought they were doing the best for their kids whether they over disciplined them, (to make them strong), over-fed them, (to make them feel loved) or over-protected them. To say nothing of the family break-ups, new partners and re-locations which suited the parents more than the children.

Chinese footbinders, FGM practitioners, "spare the rod and spoil the child" types - all did it because they thought it was absolutely the best thing for their child whom they loved.

Worth thinking about.

*But you’re forgetting another ideological group jumping on the bandwagon. Those who favour death pathway care and are adamant the NHS is wonderful and always right and that the state to decide on children’s treatment than parents do are yet more ideological groups. And one even more pig headed than the army because they don’t even realise they are an ideological group trying to impose their viewpoint, they simply believe they are right."

Mightymucks, you are right that the belief that life should not be maintained at any cost is an ideological one. It is one I also subscribe to. But it is also one I came to believe strongly after seeing up close and personal what it is actually like for someone when they are in the later stages of life.

Victorian times had the idea of a 'good death' and I suspect that is because so many people had seen what it can be like in the later stages of life. It is NOTHING like the films, absolutely nothing, and I was shocked to see the reality.

In the US, though, where Charlie's parents are suggesting he could be treated, the law falls much more heavily on the side of the parents even if this goes against the recommendations of medical professionals.

I linked this on a previous thread; it's an interesting read.

www.bbc.com/news/uk-40600932

@PerfectlyDone - I completely agree with you. My WC grandparents and parents pushed education for all their children like crazy - because to them, education was the means by which someone could advance in society. My GGP on one side were employees of a large estate, and they not only championed education but actively aped their "betters" : they aspired to a better way of doing things than they had been accostomed to, and believed by upholding various standards - "respectability", in essence.

Outside of immigrant/refugee communities, this attitude has largely died out in the UK. There's no real recourse any more for "respectability" and definitely none for "shame". Undoubtedly, there were toxic things associated with both concepts as well, but we've thrown the baby out with the bathwater.

In the developing world, education is still prized as a means of social mobility, but I don't know if this is a peculiarly British phenomenon or if it's a developed world one.

With tuition fees, education is a more difficult means out of poverty than it used to be. And realistically only ever benefited a small proportion of people.

I would argue that specifically a good level of literacy allows social mobility. Conversely, without functional literacy a person can't fully participate in education, the workforce or society.

So much depends upon being literate and without a doubt high linguistic capital smooths the way in life.

@Battleax oh heck, that should have said anti-vax groups not anti-gay. Damned typos!

@crunchymint but I am not only talking about tertiary education: I was the first person in my family to stay at school after 15, never mind going to university. All education was seen as a route out of poverty - in the beginning, by being able to read and write, to have access to a wider range of jobs. My GGP and GP (including my GM, who was unable to attend grammar school as her parents couldn't afford the uniform) pursued further knowledge throughout their lives in the hopes of improving their and their children's lives. GF left school at 12 but went to nightschool - and got a second job selling encyclopedias so he could have access to them for free. Their stories really aren't uncommon.

Yes, university is paid for personally now - but it hasn't had a massive impact on recruitment (very recently ex admissions tutor for my department at a post-92) : what has been really striking is the quite low levels of really quite basic literacy amongst students - and the pride with which they tell me that they've "never read a whole book" (disclaimer: this might just be economics students )

Access to education in this country is higher than it's ever been in British history: but I honestly don't think it's appreciated or valued on a macro scale in the way it has been historically.

@MadameGrizzly I completely agree with you. It's hugely valuable to be able to communicate clearly if you wish to be taken seriously/advance/progress

Like it or not, there are linguistic markers that can betray and individual- or benefit them.

Hefzi - similar attitudes from my parents. And yes I despair when I see the general level of ignorance and low levels of literacy and the way it is facilitated /enabled- as if education is worthless and somehow undemocratic.

A relative works in a University that used to be a poly, and has mainly local people attending. She says that the vast vast majority of are working many hours in paid jobs to fund their course, and this has a real impact on their education.
Sadly night school no longer really exists. I agree it was an important way for people out of poverty, especially those who maybe did not realise how important school was at the time.

We are the only country that rushes to terminate parent rights and refuses parents wishes if they wish to transfer their child to another medical organisation who are willing to provide care.

We don't ever rush, Mighty. It's always the very last resort when nothing else will prevail in time to help the child. The very fact that these cases hit the newspapers is a demonstration of how rare they were - if it was the case that we're constantly doing this, it would effectively be routine and not newsworth.

Battleax oh heck, that should have said anti-vax groups not anti-gay. Damned typos! blush

And there we were working out a whole X rates theory

Don’t you just hate the tyranny of autocorrect?

Fascinating post, Hefzi. I am Scottish and the attitude to education in Scotland traditionally was very much as you describe. Scotland (and Northern Ireland) have traditionally had much better education systems than England, not least because of strong parental support for schools and ambition for their children.

What happens in schools is so important but very hard to get right. When I was growing up in the 60s and 70s, schools and teachers had enormous freedom to teach what and how they wanted. No National Curriculum, no SATS, no league tables, no Ofsted, no performance management for teachers. It was almost impossible to sack a teacher. Good and bad things about that. Very few teenagers took public exams or stayed on after minimum leaving age. Some children were badly let down by teachers who really weren't up to the job but hung on for the pension (my mum was a teacher and had at least one colleague like that). Standards varied enormously. There was no consistency in what was taught from one class to another, let alone from one school to another.

Since the 90s there's been increasing stress on test results and (surprise, surprise) lots of teachers now teach only what's needed to get through tests and exams. This is so sad. There is no time or incentive to teach the children to think. Original thinking seems often to be penalised in exams. I'm not surprised to hear on this thread about graduates who don't seem able to think for themselves. They've never been encouraged to do it.

Battleax oh heck, that should have said anti-vax groups not anti-gay. Damned typos! blush

Oh, how I love a good AC cock-up!
Go, me, with my non-vegan semen theory!!

But, yes, having concerns about vaccinations is understandable and there's nothing wrong with asking questions about them, the extremists in that camp are a worry IMO.

Re education: it is not 'just' formal education that is mission, it is lived example, values, mutually beneficial behaviour being expected and the lack of it being punished by the society an individual lives in this giving a disincentive to misbehave again.

We live in a time in which how somebody feels is given more value and importance than facts, in which every opinion is seen to have the same and equal value (so, if I say 'the world is flat' that that is My Opinion and therefore Right and must be Respected By All and anybody challenging that is intolerant and evil).

I think pushing virtually every school leaver in to some kind of academic education was ill-conceived too. There is already a skill gap (and gawd help us when all the Polish plumbers leave post-Brexit) and in 10 years time we will have far too many people with degrees in various useless subject without much in the way of transferable skills, while more and more jobs are looking for degree educated people - of course 'with experience' while not being prepared to give youngster and leg up with their first job.

Original thinking? Pur-leeze - one size fits all is much better: easier to get stats from and 'fair'

What happened to encouraging people in what they are good at? What happened to teaching confidence, risk assessment, daring to be different, and yes, aforementioned original thinking?

I honestly despair at times.
Medical school only with 5As? Being academically bright, or just very good at passing exams not a good doctor does make, just as an example.

Clearly, I ought to revisit my education - pardon the typos. Standing on a soap box impedes my typing skills apparently.

*DS wanted to study A level Critical Thinking but decided against it when he discovered that is is discounted as an A level by most universities.

Tells you everything you need to know about the value even educational establishments place on critical thinking skills.*

No, universities do value critical thinking skills. They are not interested in Critical Thinking as an A level because it is a soft option that teaches nothing. You can't teach critical thinking as an abstract skill; critical thinking is something that you have develop by acquiring knowledge, which is best done by studying subjects like history, geography, the sciences and so on.

www.aft.org/sites/default/files/periodicals/Crit_Thinking.pdf

Weeell , some techniques re critical reading can certainly be taught, whether that is worthy of a formal qualification I genuinely don't know.