Alfie Evans 6

[CamomileTeaShotofVodka]

Following on from the last thread. If there's one already please do delete this one.

Remember not to speculate or make negative comments about the family or discussions will be stopped.

Thoughts are with Alfie tonight

Such an important and sensitive topic.

We all have sympathy for what the parents are going through, no one should lose a child, doesn't mean we have to like the way the things are being handled now, and the most important person in all of this is Alfie.

the brutal truth is that this child has a terrible disease, caused by nature (or by whatever you believe controls nature). It is no-one's fault and it is incredibly sad that, like many other children, he will get no chance at life. I cannot imagine what the family are going through.

No-one is offering treatment because there is none. However some with their own agendas are taking the chance to twist the situation. I do wonder if the large amount of money in the crowdfunding account may have attracted such people.

and standing around yelling and threatening only makes it worse.

I completely agree with the points being made about patient confidentiality. I worked in comms for over 30 years, many of them in the NHS and social services. I've always taken the view that, once a patient or client has breached their own confidentiality, all bets are off and the organisation should defend itself. Some senior managers and clinicians have agreed with me, others haven't. I wouldn't want to be working in the AH comms team right now, I really feel for them.

Keneft precisely.

I couldn’t agree more

@GorgeousJaws

Apparently,

"Xenophobic? I've heard it all now"

...Is delete worthy with a helpful link to talk guidelines thrown in.

??? Oops, I did it again.

Hi Gnother,
We did say on our post that some deletions had been made because they repeated deleted posts. "As you can see, there have been several deletions on this thread (albeit some for repeating posts rather than breaking guidelines themselves)."

We frequently delete posts that repeat previous deleted posts, in a bid to head off a derailment as much as anything else, as discussions about moderation are wont to do. All we're asking is that posters on these threads refrain from making personal comments and attacks about the family, and don't speculate as to treatment, motivation etc. We don't believe that is unreasonable and we do believe it is in the spirit of the site to uphold those guidelines.

FlyingBird we've done that argument, other posters came on and agreed that they had, had to defend our City. there were derogatory remarks made yesterday. I pointed out that there were more Scousers working in the Hospital than standing outside.

I don't know why you think MNHQ disagrees, they have stated that any attacks on Tom and his family will be dealt with.

Toms asking for a MRI, ECG etc today and I think Alfie should be given them.

He is asking for Alfie to go home, with life sustaining equipment, but accepts that there isn't any treatment. If Alfie's brain is deteriorating, he will die. They say he isn't in pain/discomfort, so I am starting to wonder if there are egos at play.

Posters are saying that Tom is paranoid if he thinks he is being given smug looks. yet there are numerous threads about how badly posters, new Mum's etc have been badly treated by hospital Staff. Police don't always behave well, either (understatement of the year).

I think it would be useful to do a MRI, AH wanted to just before the Court Case, but Tom refused. Because there is now World Wide coverage, it would be a useful tool in minimising the reputation of our Government, NHS and AH itself.

Not sure YetAnotherHelenMumsnet intended that post to be addressed to me ...

I'm amazed when discussing this how many people think parents can do whatever they want with their children. My dh can't fathom why the parents can't just take him to Italy 'so what if it's not the best thing, it's their child, they can do what they want'.

I don't think so either, Gnu, and as far as I can see, GorgeousJaws hadn't repeated themself anyway so I don't understand the post.

I'd agree it sounds as if an MRI would be useful, but I guess they may have to weigh up the benefit against the fact that Alfie seems to have seizures in response to touch and movement? Is an MRI possible if he is having seizures?

Agreed an MRI/eeg would be helpful

Why an MRI though? We know that his brain is mostly water. It might show that it's worse but it won't show any improvement. Why put Alfie through the procedure just to prove a point?

Alfie needs peace- he needs loved ones to hold him and spend his final hours with him with the help of medication to make it comfortable. He does not need unnecessary ambulance rides, plane journeys or procedures. He is a dying child and should be allowed to pass away with peace and dignity.

The rules on patient confidentiality have not been relaxed mightymucks. Not at all. AH have only been able to speak in court. They are otherwise bound by confidentiality requirements so eg they've not been able to provide their own commentary to the media when the parents eg ask for defib equipment. When the parents make accusations against staff online, AH can't respond in kind without a breach.

This is something that could potentially be looked at in the future.

I agree with the pp who felt that a hospice would be a good environment for ALfie. However, there will be other families receiving palliative care who do not need unnecessary disruption to their very private goodbyes. For that reason, it may be tricky to find a hospice willing to take him.

This may sound a bit callous but this time with Alfie should ideally be special time for his parents - to cuddle him without invasive tubes and spend time with him away from noisy monitors etc. Alfie has a brain that is liquid and unresponsive, this time is not for him because he is beyond awareness, it’s for his mum and dad. At the moment every breath, minute, hour, day will feel like an eternity of him “fighting” but it’s clear from the pictures that he’s dying and in the grand scheme of things, even if he lives for a few more days, he doesn’t have long.

This is special time his mum and dad won’t get back and time on social media, faffing about with legal cases etc is time they’re not fully engaged with him.

GnotherGnu he doesn't appear to be having the level of seizures that he was and they are certain he isn't in pain. That may be because even more of his Brain is gone. Which would be helpful towards the family moving to a greater acceptance.

It's interesting that MN didn't have a problem with posts referring to people not towing the AA line as dementors. Unless that's been deleted since i last checked, in which case about time.

I think that any medical decisions made now, including whether or not to carry out scans, should only be done if there is a benefit to Alfie and not in answer to criticisms or to satisfy members of the public.

Apologies, Gnother, it was indeed GorgeousJaws that we intended to address, thank you for pointing that out.

This thread does seem to be derailing somewhat from the subject matter, could we ask that if anyone has any further moderating questions they report them, so that the thread can get back on track?

If TE didn’t accept the results of the last MRI why do another one?

I think any tests that can be given should be. Part of the problem is the perception that AH isn't doing anything. If those tests can be made, that perception can be corrected. Something's got to give here or the endless court hearings and acrimony will just carry on until Alfie dies and then I fear things will kick off in a big way.