Alfie Evans

[IcySlippy]

www.liverpoolecho.co.uk/news/liverpool-news/alfie-evans-parents-plead-sons-14231597

Anyone following this?

People are also heavily against the death of a baby. He is small, compact, chubby and cute. A baby being on a feeding charge isn’t as ‘shocking.’ If Alfie were a teenager or a cumbersome adult, not a sweet and innocent baby, I do wonder if there would be such an outcry.

If I just sit and think about that for a second it becomes unimaginable. Imagine being in any sort of discomfort and a) not even being able to change position slightly to relieve it and b) not being able to communicate that you are in discomfort.

These are the people that I care for.

@FlyingBird

Thank you for highlighting this. Like many others I have picked up a misconception on the Internet! It is so easy to do.

Ellen hopefully is isn't in discomfort, hopefully he isn't aware but the problem is once a brain is so damaged that speech, movement, facial expressions etc. are all not possible how can we be sure that the remaining function doesn't allow the experience of pain of discomfort given that there is no way for the patient to express it.

Or not of

I hope people aren't judging the parents too harshly. They are not being rational, and in time I think they will live with a lot of regret about the length of their battle with those who advised them to allow Alfie to die on his own timing, which is likely to be swiftly. However, they are tortured, too, and some relatives find that place to be one in which they can't think clearly and need time and come to terms with their situation.

The more they are forced down this line that nobody chooses, the less they are in control, the more they will strive to regain control. It isn't what we'd want, it isn't what Alfie needs, but it is what the parents need right now. As for the staff at the hospital, shame on them if any refuse to work with him. I say that as a (now non-clinical) ITU nurse. We don't pick and choose desirable patients and relatives. Everyone gets the same high level of care, and if relatives are needing skilled communication, we make sure we not only provide it, but we make a clear, contemporaneous, accurate record of our communication in the notes for further reference.

This is not an 'interesting/fascinating case' for them. This is their reality. Alfie is their boy. He was meant to grow up, to grow old, to watch them grow old and die.

I reckon if the Dad had accepted the verdict, the hand wringing would have been 'ooh, not enough fight. Not like Charlie Gard, are they? Just letting him go. Do you not think they care.....?' I think they were never going to win.

Shrimpi I don't blame them at all for my cellulitis they were trying to save my life. They shoved the needle in without wiping it. I only know Cos I was struggling to much I was staring at my precious ring on that hand as something to focus on and know they didn't wipe. And then it was left in for 5 days despite me saying it was sore. Because I'm hard to place in. When I was getting discharged cellulitis was starting and I showed them and said it was red hot and sore and nothing was done. It ended up spreading so badly over the next 2 days I was readmitted on a drip of antibiotics.

I don't blame them at all. They were under staffed and saved me in resus and the intensive care Drs came down and made sure i was safe.

What I meant was sometimes in the bigger process of lifesaving essential things happening minor injury or issues can occur. So like an ng/j cam cause bleeding etc. But is necessary or vent tube change.

I'm agreeing with you. I don't think I explained my other post well enough. I think they have worked extremely hard for that little boy.

Following this case with incredulous horror.

I cannot believe what I have read tonight on facebook. What appears to be an Evans family member saying 'remember, Alfie was admitted with a chest infection '. The implication being that AH have somehow caused Alfie's desperately sad degeneration. I cannot believe accusations of that magnitude are being thrown around - and to hundreds of thousands of followers. I notice the accusations are always made at faceless groups, 'those assholes, 'sue them', 'scum'. Who is being discussed here? The consultants? Nurses? Lawyers? It's really not clear.

Noone could read the report from Feb and see anything but a tragic and fatal act of nature - and when you can't accept that, you deny the reality of the report. How apt Gove's immortal line about society being sick of experts seems in 2018, not just in this scenario but so many others.

@IronicWitttUsername

Im sorry I shouldn't have assumed you didn't know what you were talking about! Just had a bee in my bonnet. And the meaning in your first post was easy to understand don't worry.

I think that the problem with this is that you have a bunch of randoms on the internet egging on vulnerable young parents in the toughest time of their lives. You people live their lives online, and the opinions of strangers seems to have even more of an impact on their choices than it would have years ago. For them, allowing their child to now pass peacefully will mean 'backing down' and possible threats from the 'army' about them 'killing' their son. There is no good result for the parents in this situation.

Shrimpi

I can't find the words to describe your narrative but they are positive (everything just seems crass when I type it).

The only thing I would add is-

Then he gets a cold, gets sick and needs non invasive ventilation, but that time he makes an improvement and comes off of it

From what I understand they were told to prepare for his imminent death and he "recovered" (that is he was no longer in danger of imminent death). So the time there was a non-incremental deterioration he "fought" and "won".

@Swimagainstthetide actually I do think the behaviour of the parents is unreasonable now. Certainly all the allegations, encouraging the mob. He's only young - I have a son who is about the same age - but fighting through the courts whilst being used to radical Christians and a horrible lawyer to fight on a legal basis, I understand, the other stuff and all the lies about AH, I don't.

I know parents who have lost their children and they haven't behaved like this.

@Shrimpi I think your timeline is feasible considering what has been published in the public domain.

I had a brief look at the 'official' Instagram account and the parents frequently post photos of a very tiny, well looking Alfie with captions along the lines of 'we want this Alfie back', which fits your narrative.

I found the Instagram account very distressing. It was set up mid 2017 and Alfie progressively looks more and more unwell in the photos posted. I am upset by the child's complete lack of privacy.

One way the social media frenzy could be prevented would be the Courts prohibiting the publication of any identifying information, including images, once a case has been listed, much like what occurs in the family courts to protect the privacy of children. Surely the current situation is not in the best interests of any child?

One of the consequences of this situation which will not be addressed will be the loss of experienced staff in that unit, and difficulties afterwards attracting staff to work there. There will most likely be beds shut as they won’t be able to staff them. The amount of stress working with this hostile and challenging behaviour day in day out should not be underestimated. It’s worse than A&E as the family are there for many months as opposed to hours. We need to have better protocols for managing these desperate cases.

Their behaviour is unreasonable, for sure. But people who are in extreme situations behave in extreme ways, that even they are shocked by. That's all I am saying. You can't judge people in extraordinary circumstances by normal standards. I wouldn't behave this way, I am almost certain. But I have the knowledge and experience of end of life experiences probably 100 times over, if not more. They may well have watched other situations similarly in the past and thought "those parents....."

But now, they are here, and they can't back down. We need to make a path that it is easy, not one that is hard. One that is forgiving, not punishing. One that is understanding, not judging. It's the only way they can climb down their mountain and give Alfie his dignified end of life experience that they will realise, in time, that he needs, and they need.

I totally agree that the inability to back down or see a 'good' way out is severely hindered.

The poor family. TE had posted an hospital letter detailing plans for Alfies end of life care on Facebook.

Poor lad, poor parents.

I am glad the date is unknown to the public they need the privacy to enjoy Alfie whilst they can and grieve when the time comes.

Hope the coming weeks are kind to this family.

Tom really needs to step away from Facebook now and spend as much time as possible with Kate and wee Alfie. I hope he doesn't end up regretting having so much of his precious time taking up with sheer lunacy in what is likely to be his son's last few days.

Regardless of whether he thinks the decision is right or wrong, he has done all he can do now. It's out of his hands.

I'm horrified he has posted that letter to be honest. Alfie has NO privacy even in his last hours . He has no respect for the law whatsoever.

I can't believe what I'm seeing, that letter and pictures have really upset me, I don't think anyone should be reading that letter, so so heartbreaking.

I agree, the father really needs to step away from all social media, and let his son go in privacy and dignity. But I doubt he will.

Everyone in the barmy army is telling him that fentanyl will stop Alfie fighting back..... it's deeply upsetting and so very wrong. I've reported the FB post

It's all so depressing. The army are calling for riots, demands for Alfie to be taken from the hospital, someone else is saying they need to go through different court processes as Alfie is his mum's 'property' and can be removed under that view. It's horrific. I can't imagine the pain the parents are going through but this mob, foaming at the mouth and gnashing teeth are making this so much worse. It's so disturbing that there are people on Facebook, entirely unrelated to the family who have updated their profile pictures to Alfie - it's all gone too far.
I think it's despicable the way they are abusing the hospital staff who are obviously doing their very best in what is an absolute war zone currently. They should be bloody ashamed.

I thought it was part of the court order? Maybe the bit the media were excluded from last week? Tom has called it an execution and some of the army have taken the administering of relaxants for Alfie's comfort during the process to be a 'lethal injection'. This is so awful, he needs his family to pull him away from social media and the ridiculous army. So sad.