"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?

Being academically bright, or just very good at passing exams not a good doctor does make, just as an example. I used to sit in my university library with the medic students with their boxes of bones. A lot of them did not have good interpersonal skills was my purely anecdotal impresssion. This was 1970s Scotland so I'm sure it's all different now.

More on critical engagement with media sources would be a good idea, starting Y6/7, but I’m aware that everyone is always suggesting extra “essentials to shoehorn into the curriculum.

This was 1970s Scotland so I'm sure it's all different now.

A bit.
But less than you'd hope, I'm sure.

We don't ever rush, Mighty. It's always the very last resort when nothing else will prevail in time to help the child.

We do. In comparison to other countries we very much do. Again, it’s not just me saying this, it’s Latvia, Slovakia, Bulgaria and even Nigeria which have complained about this and accused us of breaching EU law and the UN convention on the rights of the child.

Even the British Association of Social Workers produces an inquiry saying that the rights of parents were routinely breached by our public sector and legal system and alternative interventions were not explored before going for the last resort.

So yes, we bloody well do rush.

And do these other countries treat their children significantly better than the British do theirs? Do the Nigerians, for example, have a better record on child abuse than we do. Do the Slovaks and Latvians make better decisions on the medical care for their children than the Brits do?

I am struggling to comment on that, you are mistaken, truly. A tertiary expert centre like AH or GOSH or a few other centres around the world are the only places that can diagnose and manage these incredibly rare conditions

Yes there are other centres that treat these conditions in the US and Australia and Europe. Nobody with the cash would go to the NHS where they risked being told the NHS is going to court to refuse them the right to choose where their child is cared for when NO OTHER COUNTRY DOES THAT!!

I don’t understand why people are so mindlessly accepting of this that they think it’s normal when it’s not.

Even the British Association of Social Workers produces an inquiry saying that the rights of parents were routinely breached by our public sector and legal system and alternative interventions were not explored before going for the last resort. Does this refer to these 'secret courts' that the papers go on about?

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.

It it is not that the law does not allow a child to be treated elsewhere, if parents want their child treated abraod they can do that. If the Gards had emigrated to the US and paid for treatment there it would have been fine. Same with AE; if his parents had moved to Italy a year or so ago it would have been fine.

The problem is that thse parents wanted to do, what the medical professionals involved in the child's care believed, would be harmful for the child. THAT is the point. It would hurt and distress the child for no benefit whatsoever.

I hadn't realised you were talking about going abroad. So its not the NHS you see as the issue, but the standard of our Drs and nurses?
And I do know people who have opted for NHS over private medical care in this country.

When it comes to rare disorders, which Alfie has, the top experts will be a handful of people and can be working in any country. So DP has a rare genetic disorder and the top expert is by chance in Scotland.

So I can presume mightymucks that you have never used the NHS then? You don't use your GP, don't have your NHS provided smear, and you haven't had a baby in an NHS hospital? Never seen a midwife, had a health visitor, never availed yourself of the free vaccinations for Children???? Because obviously the NHS and doctors and nurses are so dreadful

Sticky, I agree with you.

The smoking ban has played a part in the segregation of society too. It caused many many pubs to close, pubs where you got a mix of people from all social strata and where they would chat about the issues of the day - I am old enough to remember this happening such that it was just normal life as in "There's a chap I met in the pub who told me that bricklayers only earn x......." or "This bloke in the pub told me y and that he thought .......".

Social levelling.

More on critical engagement with media sources would be a good idea, starting Y6/7

This, but also - a lot more broadly - engaging critically with claims of all sorts, be they facts or opinions. And being able to distinguish between facts and opinions. Understanding basic empiricism and that not all evidence is created equal. Etc.

Fascinating posts about the old WC notion of 'bettering oneself' by the way. They really resonate. Although I was born and brought up in a firmly MC family, my mum's father 'married up' and came from a rural WC background. I recognise this attitude in him a lot (well, used to - he unfortunately died last year). He used to take endless pride in the fact that his children and grandchildren had degrees and not only jobs but professions in a way that was never quite accessible to someone like myself for whom this was just 'the done thing'.

months of expensive legal wrangling at highest courts in the UK and Europe doesn't look like a 'rush' to me.

and it doesn't change the effects of the disease. If only. It also doesn't change the fact that no-one has treatment for this child. All anyone is offering is existence.

I am still haunted by the widely circulated American video of what could be this child, a quarter century on.

Maybe ghtymucks, you do know that private clinical care I'd delivered by NHS doctors, don't you? It's essentially no different except you get a nice single room, ensuite bathroom, gourmet menu and wine list. How any of those fripperies would benefit a terminally ill child is beyond me.

Ffs! Mightmucks. And is delivered.

When I had breast cancer I had a private diagnosis and mastectomy but NHS diep flap reconstruction delivered by an internationally renowned consultant so NHS can be the best. Thank you Mr R! You helped me so much.

Yes my mastectomy was done by someone who works in the NHS as well as private. They're all at it the little devils. Yes I had a lovely private room and widescreen telly but it was very isolating. I much preferred being in the NHS ward with the other reconstruction gals. I've never laughed so much in my life.

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

So agree with this...

Just because people are not educated to degree level doesn’t mean that they are not emotionally intelligent. It is simplistic to think that if people are from a working class background they haven’t got people in their immediate families who haven’t done amazingly well and are extremely well-connected.

Re critical thinking - have you ever thought they may just be reaching a different conclusion. That their life experiences are different.

Yes and No .
It's not about the conclusions it's about how they/we get there

Mightymucks is being dismissed here quite frequently but she/he is right about the recent BASW report into adoption with several challenges about whether our practices are rigorous enough, the impact of austerity on adoption and, yes, dexra the impact of the family courts being closed also been discussed there and amongst other well respected parties (the outgoing head of the family division has himself raised this issue). There have been some LA' s hauled over the coals by the family courts recently for shoddy and illegal practices (e.g. holding children under s20' s for many years when it's a temporary power, then ignoring the parents request to return the children which they are legally obliged to do or go to court to get the placement legally approved). I'm an adopted but I'm under no illusions that our systems can fail. I think it's crucial that these decisions which involve the state over riding the parents wishes needs to be properly assessed on going to ensure our las reflect the correct balance. Several well respected family court barristers including @Spero have differing views on this which they've shared on Twitter.
There is lots of discussion here about critical thinking but there appears quite a lot of group think/self validating posts going on right here. As mightymucks states - we are more unusual than other parts of the world with our legal positions hence the high response globally. They aren't all brainwashed crazies - they genuinely disagree on how we weight the decisions between medics and parents.

Fair point

I see a lot of reference on this thread to C2DE well to be honest you may as well say benefit class because none of the old working class jobs exist anymore. No docks in Liverpool or London. Containerisation instead. No manufacturing, no mines, no factories, no mills. Most have been converted to apartments. No car industry. Probably the only industry left is the building industry. I personally know families where four generations have never worked. These people are fit and able and would love to work. How long before middle class professions go the same way.

Derxa... NHS consultants are perfectly entitled to undertake private work in their own time... They are 'not all at it the little devils'... You seem to be implying they are on the make, sneaky etc. I really take offence.
I work Saturday in private practice through choice, I earn an extra income stream for it but do give up my Saturdays.
That is not affecting my NHS work.