Alfie Evans 7

[StayingAtTamaras]

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I have followed these threads from the beginning and although there have been some lovely, informative and thought provoking comments, there have also been far too many people relishing in bringing titbits of information to the thread and twisting it to criticise bereaved and traumatised parents. I think it is a positive thing for people to discuss this situation respectfully and share their experiences, but at times it has been like watching vultures picking over the tragedy of a very poorly baby and it's been quite repulsive reading if I'm honest.

Sozzler, I agree with your whole post but this in particular. Ironically, I've spotted several posters across these threads from the previous mumsnet troll thread "Oliver's army" - a troll claiming her son was seriously ill. Posters here joined that "army" happily asking for updates and offering support and attacking anyone who reported the threads or showed scepticism. The engagement may have been nice and middle class but the mob led groupthink came from a similar place - soap opera style over engagement, weeping over a child they didn't know.

I'm sure they can't pass a law where parents have too much autonomy over their children.
I totally empathise with any parents in this situation. But the child has rights. We have worked tirelessly for years to get rights if children to be recognised and to teach them the responsibilities adults have towards them. We really cannot say - except when the adult wants something different different to what the experts think best.

It would be a total disaster if people were permitted to demand treatment. It just wouldn’t work. Most people have little understanding of treatments and interventions and the thought of forcing children and other vulnerable people to undergo treatments which are not necessarily in their best interests is just appalling. Doctors can make errors of judgement and the patient doctor relationship should be a collaborative one, but such a change in the law would be a retrograde step.

I'm an nhs manager. This whole scenario is a nightmare for the hospital staff who have to keep the building secure and take care of every child there. Whoever is their duty manager of the weekend will be having kittens. It's a huge responsibility.

Jesus that looks like a scene from men in black

I don’t even know why I’ve posted that anyway because it’s already happening. Relatives browbeat doctors and demand treatments and interventions all the time now. These quite frequently harm the patient. I’ve seen it and been involved in it and I’m glad I’ll be leaving nursing soon due to it

Northernlurker I so feel for all the staff, it must be horrific to be working there at the moment . How has it ever come to this?

Someone asked about Alfie lying on his front. I seem to remember from our time in NICU that babies were put on their fronts/prone position to help breathing. My son came off the ventilator and had high co2 levels (I think) at first. They put him prone and the levels improved.

So it's possible that something as simple as position is helping in the short term.

Efrig - that's a shame.

We have created a world where everyone thinks they should get what they want, regardless of anyone else.

And Sozzler - I agree up to a point - that's why I largely ignored the CG case - until it impacted on my trying to get to work. But this is different. The discussions have mostly been wider ranging than that and touch the heart of some major sea-changes in our society that really do need examining.

I honestly don't want to know about the baby - that is a private matter. I am very much interested in the medical, legal and social implications though. But I agree - there has on occasion been some uncomfortable "interest"

Thanks for explaining itscurtains

Can someone explain the new law proposal to me in a dummy version?? I read it & it doesn't make sense when coupled with Alfie's case. The parents haven't funded their own legal team, the public did that, altho okay legal aid would make sense. Outside independent sources were consulted about Alfie's condition - some at the parents' insistence - so we already have that in place too! And the thing about impartial advocates for the child...is that not what the guardian is???

Dummy's guide to if anyone can, please!

comehomemax yes, many people on here are quick enough to berate Alfie's Army, yet some of them are no better themselves. I'm not condoning the more sinister behaviour by some army members such as protesting outside hospitals or making threats etc. but at least Alfie's Army believe they are there for a worthy purpose. In contrast, I struggle to find any positive purpose in slagging off and second guessing parents who are going through sheer hell.

I don't think Alfie looks too bad in that picture. I think his arm looks big due to the angle the picture has been taken from. However I don't think his O2 requirements will be being met on a trickle of O2 when he was previously on much more than that on a ventilator. Lying on his front like he is is to try and improve his gaseous exchange and keep his stats up. I think AH are doing what they need to do to placate his parents, but it is a long way from where he was before extubation.

Sozzler sorry but what 'slagging off' has been done about Alfie's mother?

Wtf?!? That Polish security team is one of the strangest things I've seen all year! Did the family ask them to come, or have they taken it upon themselves to "help"?

I think the purpose was seen to be to support the doctors and nurses who were being attacked. And to show some solidarity with those parents whe were going through similar but also having to deal with the chaos around the hospital, threats of violence and fire alarms etc when their own children were in theatre.

There was also concern that this was not doing the child at the centre of it all any good at all - so essentially the criticism of the father stemmed from a similar desire to see right done.

@sozzler actually the only person to use the C word about the parents was someone trying to defend them and call the people on these threads snobs. I’m not saying that all comments have been appropriate but I don’t think they’ve been quite as bad as some are making out.

thanks June for clarifying about the feeding.

There have, true, and it is right that they should be deleted on the threads. Absolutely.

No-one should be above question when they threaten others with violence though. However this is not the place for personal attacks and mostly MNHQ have been pretty quick to delete anything like that

MynameisJune, that's not true, the term was also used to attack the family several threads back. Someone did challenge them on it and the comment was deleted soon after by Mumsnet.

I don't like ignoring people's comments and questions aimed at me but I'm not going to enter into debate or back and forth discussion any more because I don't think it's appropriate given what is being discussed. I just felt a need to point out that discussion on these threads have not always been kind and perhaps people need to consider how what they are writing comes across given the tragic circumstances involved.