Alfie Evans 7

[StayingAtTamaras]

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Thanks Tamaras for mentioning it right at the top of the thread, it's much appreciated.

I really like the tone of the debate on This Morning. Hugely compassionate towards the parents but I do more than slightly love the Dr for telling people to read the court judgements and base their opinions on fact.

The concern with travelling to Italy was not just that the palliative options weren’t in his best interests, but that the journey wasn’t either. It was discussed that even a short trip could cause terrible seizures and even death. So how come home is an option? Surely it’s not actually in his best interests either, as lovely as it would be for his parents?

It seems that the hospital is home to alfie, having been there so long. He is already home.

I think this is just a lull in the storm though and this will all kick off again. I also think mynameisjune has it nailed on regarding spokespeople.

I also think MN have taken the censorship on this far far too far incidentally.

Thank you hugely to everyone at @MNHQ who have let these threads stand. It's been strangely comforting to share my own story and hear those of others who I also deeply thank for sharing. We all need to address the subject of death more, especially that of our children. It's the worst thought in the world but there are far too many of us out there who have experienced it and almost suffered in silence as it is such a taboo subject to even raise.

I’ve been following this case and these threads
I feel with AA there’s an undertone of other concern, that it’s not just about Alfie but that within certain circles it’s become a worry that parental choice and whatever rights they feel they have as parents are under threat. So as much as they fight for one specific child their fight is perhaps because they feel threatened themselves ? All the talk of corruption, conspiracy, murder etc. It just seems like mass hysteria and has got out of hand.
People think they have control but they don’t

Tom's statement was very conciliatory rather than combative.
As a parent, I do sincerely hope that they are allowed to take him home or can work with AH to come up with a solution that works for everyone. Thoughts and prayers to Alfie, the family, and all who have been affected by this.

@prettybird that's lovely, thank you for sharing and for you

I'm worried that this is going to happen more often. In the Charlie Gard case, he was not allowed home because it would cause him too much suffering to send him home. Now AE is being allowed home. I don't know his condition, but if he would also suffer seizures, maybe they just decided that the other patients and staff at AH deserve peace, so they are letting him go home even though it is in his best interests to be in hospital. This is the fault of those vultures who have preyed on this case- the people outside, the Pope, people from other countries who have stuck their oar in to deflect from their own problems and the Religious fundamentalist lawyers. But they don't care if he is in pain or his parents have to watch him die without full medical care.

I don’t see how they have subordinate his best interests for the sake of other patients and their families. It goes against the whole ethics and ethos of the court decisions. His best interests should be met, no matter what.

I also think MN have taken the censorship on this far far too far incidentally.

I agree, it seems very odd that in this specific case they've decided to implement additional specific rules above and beyond their talk guidelines, and deleting anyone's posts who falls foul of them, despite the content not being in contravention of the site's rules.

I know as a private site they can demand whatever they wish, they could delete any post containing the word 'moist' if they so wished, arbitrarily. But it is still odd.

I had a post deleted on a previous thread about AE and I genuinely don't know why. I wasn't nasty or abusive, but I did gently criticise the behaviour of TE for the impact it has had on others. It seems that's not allowed.

There's a good post going around on Facebook supporting the hospital and pointing out that the AA brought a fucking bouncy castle and set it up on the side of the road. Highlighting the sheer insanity of the AA and how far from actually being in the best interests of AE their actions are.

"I’ve tried so hard to not share my feelings about the current situation at Alder Hey but this picture is the final straw 4 me...... a bouncy castle in the middle of a dual carriage way😡, what a lovely addition to a great day out where people can take their children to observe abuse bein hurled at staff, placards with “murderer” written on them being flashed, people chanting like they are at a football match, fireworks being set off, laser pens being shone, horns beeped, roads blocked, megaphones used! How is any of this helping Alfie or maintaining his dignity in anyway😢...... most of these people are not “peacefully protesting” for Alfie, they are joining a mob culture, that has been ill informed via social media.

I know exactly how alfies parents are feeling and denial is a horrendous place to be.... I fully understand that you would travel to the end of the earth if there is hope of a cure for your child, however there are hundreds of sick children in Alder hey and this circus is distressing for them and their families! I’m not going to share the specifics of Theo’s icu journey, because that is our journey and not something I feel anyone else needs to know, but all I will say is we were all treated with the upmost love, respect and dignity and we as parents always lead on decision making about Theo’s care!

On this exact day 3 years ago, the very staff that are currently being spat at, receiving abusive phone calls and called murderers stayed on beyond their shifts and most of the night whilst they battled in theatre and saved Theo’s life! That very night they were all supposed to be going to one of the consultant cardiologists leaving do after work!!!! Not one single person went to that do, they stayed in theatre all night long working on my boy..... his surgeon then didn’t go home to his own family that night, he got his head down in the staff room for an hour before starting work again in the morning!

So..........
#imwithalderhey
#imwitheveryparentsatnexttotheirchildsbed
#imwitheverychildterrifiedofattendingtheirappointment
#imwiththebereavedparentwhoisleavingtheirchildinthebereavementsuitelisteningtothiscircus
#imwiththebereavedparentsnowquestioningandrelivingtheirendoflifedecisions

🌟"

Spot on.

Hope this doesn't get deleted!

I think there has been massive manoeuvres behind the scenes and legal ramifications have been felt. I understand there will be no further updates re Alfie and that is in his best interest

I read that post Limon the person who wrote it has a mutual facebook friend of mine who is a paediatric nurse and a very lovely man who take sick and disabled children away every year to Lourdes .

LimonViola - glad your boy recovered. I feel the same about the hospital staff - they certainly went above and beyond to save my child. And now he is a stroppy teen - and even when he is being horrible I think how lucky I am that he is here.

Yeah, it seems the author has been through a similarly painful situation with her own child so is speaking from experience.

It really struck me when I looked into how long AE has been in hospital and how much treatment he has had, that he'd almost certainly have died already were it not for the NHS, who've willingly spent hundreds of thousands, perhaps millions, and thousands of hours caring for him and doing everything they can for him. It's very sad to see how the parents' grief has blinded them to that and led them into seeing the medics as the enemy. I wonder if they realise that the only reason they've had months and months to fight against the medics caring for alfie is because of all the hard work, time and money they've put into taking care of him, trying to prolong his life long enough to see if there is any hope of a bearable life for him.

I am so very thankful we live in a country where at the end of all of this Alfie's parents won't have a massive unpayable hospital bill to worry about during their grief. Or even worse, that not once have they had to stop and wonder if they can afford a new test or treatment or palliative care for their son.

• Oh - have I misunderstood? Just read x2boys post. - Was the story about Theo a quote? If so I apologise.

Sorry Painted, the post is one I copied from someone else on Facebook. It wasn't about my family and didn't happen to me.

it seems very odd that in this specific case they've decided to implement additional specific rules above and beyond their talk guidelines, and deleting anyone's posts who falls foul of them, despite the content not being in contravention of the site's rules

Indeed; surprising, too, to see so-called "speculation" disallowed, when so many other threads are littered with it

I was very glad to see the statement from AH which Dory posted, and disgusted - though not surprised - to see one of our more provocative posters insist on the last thread that these are people about whom they "don't care"

Disturbing

It makes me wonder if they've been threatened with legal action for slander or something similar. The family aren't short of lawyers or funds at the moment and perhaps MN are concerned about backlash later on when poor AE has sadly passed away and the 'fight' is over, maybe MN are concerned they'll be in line for legal action. Pure speculation though.

I don't know much about the actual system of providing care at home. If a child was being cared at home is there anything to prevent a parent allowing treatment by outside hcps (for example from Poland, Italy or Germany)? As it has been reported in the national press in recent days that hcps from other countries have been ejected for attempting to access AH PICU by Police and that someone tried to smuggle a ventilator in a suitcase. But could this be prevented in a home care situation?