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Original poster

"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?

OP posts:
Toddlerteaplease · 27/04/2018 20:01

@IceBearRocks, I'm a paediatric nurse, I'd gladly feed, change and wash your child if you weren't there. My job is not just about doing the medications!

derxa · 27/04/2018 20:03

No theredjellybean you've got it wrong. I love my consultants and they've helped me so much. I'm all for private practice. Good luck to you.

comehomemax · 27/04/2018 20:22

There is an interesting and well debated thread between various barristers/ family law participants including Katie Gollop from the Gard case that has been captured on celticknot website as a pdf screen shot - the discussion being the differences between "risk of harm" versus "best interests" and whether the law needs challenging for these cases. t.co/vbGnJGA1j2?amp=1

MaisyPops · 27/04/2018 21:15

come
That sounds like the onr my friend shared. Very thought provoking

theredjellybean · 27/04/2018 21:33

My apologies derxa

Spero · 27/04/2018 22:20

Thanks for the mention comehomemax

I have had an evolution of thinking on this point and I do feel uneasy that Alfie's parents are not being allowed to take him for treatment - i think it sounds fundamentally pointless if his brain is as badly impacted as doctors say (and I don't see why they would lie about that).

But the 'best interests' test I don't agree with. I think the test should be 'significant harm' as it is in care proceedings, although I appreciate that just shifts the decision making along a bit. But I think its a test that more people would understand and get behind - i.e. you can only interfere with a parents' decisions about their sick child if the child is at risk of significant harm.

I wrote a short blog about this issue in the Charlie Gard case childprotectionresource.online/what-are-the-nature-of-and-limits-to-parents-rights/

I think a lot of family lawyers are now feeling the same way.

Spero · 27/04/2018 22:21

sorry comehomemax, you have already posted about the different tests and yes, the Twitter conversation was really interesting. It was Celtic Knot who first made me start questioning this issue around the Charlie Gard case.

GnotherGnu · 27/04/2018 22:34

I seriously question Mighty's assertion that no other country interferes when parents propose to take their children abroad for treatment that may cause harm to them.

Suppose, for example, a parent wants to take their very ill child out of tried and tested treatment to be "treated" by a doctor abroad who operates solely on the basis of total woo which can only harm the child. Or suppose they were taking a healthy child abroad to undergo a totally unnecessary and mutilating surgical procedure. Are you seriously asserting that the UK is the only country that would lift a finger to protect that child?

Dancingleopard · 27/04/2018 22:36

I genuinely don’t think it’s all about drama. There is many factors that whip these situations in to the circus that AE has been.

There is an under belly of society that don’t feel that they are heard or that they don’t know enough to be taken seriously. Or that they are too low class to make choices about their own future or their child’s. This goes right through the establishment from police to SS to NHS to schools to family courts. People (from what I see ) are sick of being told to shut up and be quiet.

There are faults on both sides in the AE case because humans make mistakes. SS, police, family courts make mistakes.

I watched a video on unicef (I think) and the U.K. judicial service is actually already under the spot light.

If the public do not rise up when they feel an injustice is taking place when would things ever change ?? Law, health should be an ever evolving thing.

Even though some members of AA and MN have been extreme and not helpful it all has a place in a ever changing society.

comehomemax · 27/04/2018 22:36

I'm still not sure I fully understand the implications of the 2 differing positions (risk versus best interests) on what it might have meant for Alfie, but I do think we should consider carefully how comfortable we are with the current balance of power and why so many feel disenfranchised / horrified by the courts decision. And dismissing them all in terms of their class and intelligence makes me hugely uncomfortable.

WellThisIsShit · 27/04/2018 23:24

Very thought provoking

MarvelleGazelle · 28/04/2018 01:08

This reply has been deleted

Message withdrawn at poster's request.

MaisyPops · 28/04/2018 06:56

And dismissing them all in terms of their class and intelligence makes me hugely uncomfortable.
Not dismissing all, but if we were going to be realistic how many of the mob harrassing a childrn's hospital are the types to share photos of children on facebook that say share this so Timmy can havr treatment or if I get 10000000 likes then the doctor has said i can have a lifr saving cure? Probably the same people who saw the royal birth announcement and decided that they'd post repeated claims of child murder on the royal family announcement.

There's a group of people who've bought into all this hysteria about how we don't need experts. These are the people who think reading a post on tumblr makes them as educated in an area as a specialist expert.

Lots of people will have strong opinions on the topic, but it's a certain type of person who decides their ignorance is equal to someone else's knowledge and it's a certain type of person who mobs a children's hospital.

confusedlittleone · 28/04/2018 07:06

Alfie Evans passed away during the night, east easy little man

MrsJackHackett · 28/04/2018 07:14

That's really sad. RIP little man. X

Babieseverywhere · 28/04/2018 10:19

Thinking of his family. Rest in peace little Alfie :(

derxa · 28/04/2018 11:04
Flowers
backaftera2yearbreak · 28/04/2018 11:05

RIP. Taken too young. I hope the child’s a peace.

Original poster
Andromeida59 · 28/04/2018 11:32

So sorry to hear of this poor child's passing. Can't even imagine how his parents are feeling. Unfortunately the mob are back at the hospital and accusing the medical teams of murder.

OP posts:
seafoodeatit · 28/04/2018 12:13

I really feel for the family, this must be the hardest thing to have to go through.

I hope it's not true that the mob are outside the hospital again, what a despicable bunch they are, just when they couldn't stoop any lower.

TheFirstMrsDV · 28/04/2018 18:39

You have put into words what was making me uneasy @Spero.
I couldn't put my finger on it.
Why should the standard be different in the case of a well looked after child with no sg concerns than it is for a family with complex SS involvement?

But the standards do seem to fluctuate when it comes to families of children with SEND in my experience.

Spero · 28/04/2018 20:53

Reading more discussions and am fluctuating again. I accept that a 'significant harm' test just shifts the decision making along the line a little. is it in a child's best interests to be kept ventilated when slim hope of recovery or is that a case of 'significant harm'. ??

having thought about it some more I wonder if the root cause of all of this is our general reluctance to accept the inevitability of death. If we allowed paralysed adults to kill themselves without having to travel to Dignitas for e.g. would we be able to have better conversations about how best to cope with a terminally ill child?

I don't know. But reading more about the attitudes of those who are threatening the Judge and marching on the hospital etc I think there is an urgent need for more and better discussions about illness, disability and death to try and bridge the gap between patients and doctors.

The amount of ill informed media comment from around the world is really staggering.

comehomemax · 28/04/2018 20:56

@Spero, do you think if the judicial measure was "risk of harm", the family may have been able to argue that there wasn't enough evidence from the medics that pain /distress in travel was realistically likely. And therefore the balance of probability would have fallen in their favour?

Reading the guardian article today on the involvement of the Christian legal organisations was depressing.

Spero · 28/04/2018 21:12

yes, for me that was what tipped it - i thought that if he had so little brain function, he would not feel pain and so the parents ought to be allowed to travel with him if that helped them to deal with it.

BUT. as one of the lawyers in the Charlie Gard case pointed out - we just don't know. He had some reflexes apparently. What kind of pain would he have felt?

However the more compelling point was then made by one lawyer and another commentator - what if I was just swapping locations and he would end up ventilated in an Italian hospital, for months or years while his parents prayed for a miracle?

It all seems a bit pointless really - I still think the 'significant harm' test is better as it does less violence to the parents' wish to make decisions for their child - which in vast majority of cases i wouldn't challenge as vast majority of parents want the best for their children.

BUT regardless of the 'test' the right outcome would be to remove ventilation and allow him to die in peace. In my view.

What I think this case has thrown up into even more stark relief than the Charlie Gard case is the growing disconnect between expert and non expert and just how many stupid and vicious people are out there stirring the pot.

But 'experts' have not done a very good job of bridging the the gap.

I wonder if there is any solution now to all of this. Perhaps we just have to hold firm to the rule of law. But at what price? An angry mob storming a hospital full of sick children? We live in troubled times.