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Original poster

Alfie Evans 6

999 replies

CamomileTeaShotofVodka · 26/04/2018 01:49

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 Star

Such an important and sensitive topic.

OP posts:
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8
TheFirstMrsDV · 26/04/2018 15:43

Am I correct in thinking that this poor little boy has no brain activity at all?

I thought he was breathing off ventilation.

Ubercornsdiscoball · 26/04/2018 15:44

I have to say I would hope HCPs providing end of life care would be fully updated on legal explanations before they work with children and their families through proper channels and not just social media forums and discussions. I am aware things change constantly and vary case-to-case but I would expect medical professionals to be exactly that. For any child.

loopylou6 · 26/04/2018 15:45

I find it interesting that the parents each have their own lawyer. Why is that?

GnotherGnu · 26/04/2018 15:45

If Alfie is deteriorating as much as they say and can't feel anything, there wasn't any harm being done (as defined in Child Law), by halting things, when it reached it's peak and trying a different way of working.

That's conflating two things that shouldn't necessarily be conflated - he may, for instance, be deteriorating but still able to feel.

And of course, that "If" is the salient point. Since we don't know whether he feels pain, surely we have to work on the basis of an assumption that he does and therefore take every reasonable action to avoid causing pain unless whatever causes it is beneficial to him.

ShatnersWig · 26/04/2018 15:47

Terfin I don't see why the two things are incompatible, though. You can have sympathy and compassion for their situation but that doesn't mean you can't point out when something they say is factually inaccurate. Especially in view of the fact that the hospital aren't allowed to do so.

kirinm · 26/04/2018 15:47

Oh so we have to allow any lies or misinformation to go without comment because to object to them is not being supportive?

Yamayo · 26/04/2018 15:48

If you look at previous posts there have been instances of brain dead patients breathing independently for fairly long periods of time.
It's not necessarily a proof of brain activity.

Re the lawyers from yesterday's hearing it looked like the parents each had representation so that effectively they had two opportunities to appeal. Father's Lawyer was pleading for transport to Italy, Mother's for Alfie to be ventilated again.

mostdays · 26/04/2018 15:49

Um, I'm struggling to see how calling the family dishonest is demonstrating 'nothing but compassion for the Evans family'.

To show compassion for someone does not mean to uncritically accept all they say as absolute truth.

CommunistLegoBloc · 26/04/2018 15:50

His brain stem is intact, which allows for respiratory effort (although unlikely, but not impossible, to be sustainable long term). Whether it will remain intact is also questionable, given that his brain degenerated at an alarmingly rapid pace.

The doctors are convinced he doesn’t have any meaningful experiences. He cannot hear, see, move, make sounds, express interest or preference. So breathing independently isn’t actually a huge factor in his quality of life, which wasn’t deemed sufficient enough by the courts to merit sustained intervention.

Scrumptiousbears · 26/04/2018 15:50

Does anyone know when there is likely to be a result regarding the request to take him home?

BaronessEllaSaturday · 26/04/2018 15:51

I have to say I would hope HCPs providing end of life care would be fully updated on legal explanations before they work with children and their families through proper channels and not just social media forums and discussions.

I think it's more that having a discussion in this kind of circumstance allows people to express feelings better. It doesn't change any legal situation but it can bring greater understanding of the views of both parents and hcp which can help promote better relationships on both sides.

yolofish · 26/04/2018 15:53

to say that denying the truth about the 'army's activities is dishonest is not quite the same as calling the family dishonest is it? I think there's a distinction, maybe a fine one, but in this case the disinformation campaign DOES exist and has been all too obvious. Coupled with the attacks on AH staff, and it's a terrible state of affairs.

MorningCuppa · 26/04/2018 15:55

You can't deny there has been many personal attacks on Tom Evans himself, obviously these have been removed by MNHQ, like I'm sure if people on these threads were personally attacking the hospital or staff, they would/have been removed.

youarenotkiddingme · 26/04/2018 15:56

Can I just mention that I do know of children discharged from hospital on palliative care.
1 is still alive 6 years later!
But the important thing to know is at the time of discharge they hadn't been removed from ventilation for EOL care. Plus although severely ill they do t have a degenerative condition.
The issues that have arisen here have been that when they've been admitted since they have needed short term ventilation - so AE palliative care plan will also need to be water tight.

GnotherGnu · 26/04/2018 15:56

Like mightymucks has posted, having access to medical care here in the US has highlighted just how behind the NHS is in many areas.

Seriously? Have you seen the infant mortality statistics in the US?

DrEustaciaBenson · 26/04/2018 15:57

If Alfie is deteriorating as much as they say and can't feel anything, there wasn't any harm being done....

'No harm being done' isn't necessarily the same as 'in his best interests', though, is it?

youarenotkiddingme · 26/04/2018 15:57

Sorry meant to say my point was that using palliative care in this case needs to be done with caution

SchadenfreudePersonified · 26/04/2018 15:57

As for school prayers, I would hope that the prayers are praying for the best resolution for Alfie and leaving what that resolution is up to God.

THIS ^

I am a practising Christian. Thank God, I have never been in this awful position that Alfie's parents are, though I have had a five year old at the point of death from a severe kidney infection, so I can feel some of what they are going through.

It is one thing to fight for a child who has a chance - it is another to keep a mortally ill child alive with no quality of life just because it is possible to do so.

I hope that if I had ever been in these awful circumstances, I would have been able to let my child go into the care of the loving God I believe in. Possibly I would have found it too hard (as Alfie's parents are finding it) - but this is way sometimes the doctors and the courts must make the decision - the parents, loving and torn as they are, are too emotionally involved to see the best thing for their child.

Death is not the worst that can happen. To the very sick, of any age, death can come as a friend. And for people of faith, there is surely trust that God will care for their child.

I don't believe that any doctor casually dismisses a child's life without a second thought. The doctors and nursing staff will be gutted about Alfie, but are doing the thing that is best FOR HIM - not for his parents.

brogueish · 26/04/2018 15:59

6 threads? Yes, and each of them has been enlightening and moving and it is imo a shame that they've been deleted.

One of the points made on an earlier thread was that we tend not to talk about death or end of life, especially with regard to children, and by not addressing it, it makes it harder for people to cope with when they sadly must. The conversation that I've been reading hasn't been ghoulish or unkind, far from it in fact. It's important to be reminded that death is part of life and I am hugely grateful for the wealth of information that's been shared.

Alfie's parents are are clearly utterly distraught and I don't think anyone has failed to acknowledge that. There but for the grace of god.

Mightymucks · 26/04/2018 16:00

Like mightymucks has posted, having access to medical care here in the US has highlighted just how behind the NHS is in many areas.

I actually prefer the European model to the US.

youarenotkiddingme · 26/04/2018 16:02

I know others have mentioned it and I'll highlight it again. But the channel 4 documentary on this issue - My babies life who decides? addresses and discusses this difficult area and prompts discussions around death etc and what is a quality of life.

GardenersDelight · 26/04/2018 16:05

This is my first post 're this topic
I've worked in paediatric palliative care for 20 years. The term palliative means to treat the symptoms not the disease and a child can therefore be considered to be receiving palliative care for many years

BrownEyedGirlv2point0 · 26/04/2018 16:07

I don't understand... what does the hospital and doctors have to lose if they let this little boy go to Italy?

GardenersDelight · 26/04/2018 16:08

Youarenotkiddingme I watched those programmes very thought provoking
One of the saddest things was the fact that the family that decided to stop active treatment were anonymous because they feared social media backlash!