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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
Oowatchasay · 26/04/2018 11:42

Thanks @TheDrinks, I haven't been able to watch the live streams.

Marmitesoldiers · 26/04/2018 11:44

Do people really think it’s a good idea to give an mri, just because the parents want it? Does that mean everyone should be able to have an mri regardless of medical need, just because they make a bigger fuss? Whether we like it or not scans are scarce resources. If one person has one, it means there is a delay for someone else. Again, whether we like it or not, this will delay in diagnosis and treatment for another child. Personally I believe that medical need should always be the guiding factor. A scan does not just use the resources of the scan time, the staff operating the scan, in AE’s case probably a medical team to make sure he is safe and as comfortable as possible while having the scan but also extremely highly qualified medical radiologists to interpret the scans. Radiology reports are often the delaying factor in commencing medical treatment because the doctors concerned are a scare resource.

SunwheretheFareyou · 26/04/2018 11:44

Sorry only dipping in and out - but whilst I am absolutely in full support and admiration of hospital staff....one must remember that they are more scientist based people.

I spoke to consultant about relatives death and she was utterly hideous. Awful awful woman.

She was sat opposite me, a crying shaking wreck pulled out of my normal life - hundreds of miles away to aid terminally ill relative and she was VILE to me. 90% of staff were excellent but the care was not perfect and lots of room for massive improvement. Lots of lack of handover - really silly things were lost due to that...lots of room for improvement and the nurses...one was refusing something in a stubborn nasty way - when another - not on the ward literally RAN and did the thing that was being asked for even she gave the obstinate nurse a filthy look....Its not all black and white.

So if someone like that is talking the parents - .....Hmm

Shrimpi · 26/04/2018 11:45

AH have a duty to put Alfie's need first. His wellbeing. His dignity.

It is frustrating and unpractical in some respects that they are not able to defend themselves, not able to give ground to appease their critics.

But Alfie should undergo investigations or interventions only because they benefit him as a person. Not to improve or protect the reputation of the hospital. Not to appease critics or even his parents (although if there is no harm or discomfort to Alfie, obviously some actions to comfort his parents are reasonable).

AH should be applauded for upholding this principle. Unfortunately, they will get vitriol instead. But that's often how it is when you stand up for your principles.

SomeDyke · 26/04/2018 11:45

"I agree. Anything practicable that may help the parents come to term with Alfie's condition and prognosis can only be a good thing."

I most profoundly disagree with every word of this! It isn't about them, it is about him. Any tests etc would be of no conceivable benefit, as I understand it, to him. So, others, be they medics, parents, anyone, should not get to experiment with him. If it were an adult patient, then you could yourself consent to be an experimental subject, if you wished, even if there were no possible benefit to yourself at all, and only to science. But do you really want to advocate here for doing scientific experiments on babies where there is no possible benefit to them (just a hope that they're too far gone to feel any pain?) Because I think that is what you are effectively arguing for.

MarvelleGazelle · 26/04/2018 11:46

This reply has been deleted

Message withdrawn at poster's request.

Excitedforxmas · 26/04/2018 11:46

Where are the the photos and videos you speak of? On Facebook?

Sidge · 26/04/2018 11:46

I found it quite uncomfortable to hear the dad on the radio this morning saying he was giving up his legal fight to get AE moved to Italy so as to avoid any further criticism.

No mention of "because it wouldn't be in AE's best interests."

ShatnersWig · 26/04/2018 11:46

With regard to deletions, at times it feels on MN that "all parents are equal; but some are more equal than others" in terms of "supporting parents" and "in the spirit of the site".

I am often amazed at what is left to stand on some threads. You can be as offensive as you like about Kate Middleton, or Jack Monroe, for two examples.

This case has, as I have said on every thread I think, very serious legal implications for the future and discussions need to be had going forward on what happens for the next similar case, now that we have had two of them. These threads are useful in that regard. They are useful in clarifying for lots of people the FACTS of the case, not the speculation or drivel being spouted elsewhere. They are useful in allowing people who've been in similar situations but never felt able to speak about them.

Certain people can say what they like about the staff at Alder Hay (many of whom will be parents) but not anything about other parents it seems. A lot of people have expressed sympathy and allow latitude because of the circumstances but in other other situation criticism of certain people's behaviour would be permitted to stand. Lines have been crossed.

SunwheretheFareyou · 26/04/2018 11:46

marmite In this case yes I think MRI should be given as long as it didnt harm or hurt the baby in anyway...

in cases like this the not knowing and lack of facts is not helpful and more likely to drain resources.

nolongersurprised · 26/04/2018 11:49

And if the decision is made for an MRI when is he then extubated again?
After the scan?
After the scan has been reported?
After the scan report has been disputed and other advice sought?
There’s no way a palliative child would be reintubated and ventilated AGAIN - the act of withdrawing of active care would then have to be done twice.

MustBeDueSomeBetterFeet · 26/04/2018 11:49

@FlyingBird I though I read about it in a court transcript last week, but I think it was referring to a point in time back either end of last year, or before the February hearing (can't recall). It definitely stated TE not wanting a further MRI to show the deterioration of the brain [and may have gone on to state 'because he knew what it would show'].

SunwheretheFareyou · 26/04/2018 11:49

AH have a duty to put Alfie's need first. His wellbeing. His dignity

It throws up lots of questions how - we let people die in the UK.

Its something we all must think about - how do you want to die?

I know I want to say now in a legal document that I want to choose when I die should I get a terminal illness, should I develop dementia I want to choose. Me.

dontbesillyhenry · 26/04/2018 11:50

Lulu this is not just a topic of discussion about a child and his family it's a bigger issue of the rights and ethics in a situation where a child is deemed at the end of their life. It's obvious there is much contradiction and confusion around this issue and people do need to ask questions and receive an educated response.
This kind of conversation should never be shut down. What nobody here is trying to do or advocate is taking action that has negative repercussions on the lives/professions of those involved in such a complex situation

dontbesillyhenry · 26/04/2018 11:51

Sunwhere what do you mean the 'not knowing'?

whilstlersmother · 26/04/2018 11:52

The Express reported this today.

He hasn’t woken up he’s still a little bit weak but what we ask for is to go home to sustain his life

kirinm · 26/04/2018 11:52

Flying bird - I think in the Feb judgment is says that Tom Evans didn't want an MRI scan to be carried out because it would show further deterioration. Not sure if that is what is being referred to?

Oowatchasay · 26/04/2018 11:53

@Excitedforxmas yes, on the Alfie's army official group there are lots of videos. The group is public.

Oowatchasay · 26/04/2018 11:53

www.facebook.com/groups/alfiesarmy/

Redglitter · 26/04/2018 11:54

The parents are now saying they want to take him home? If this was being considered how on earth would the hospital etc ensure they complied with the court order and didn't leave the country.

Oowatchasay · 26/04/2018 11:54

He hasn’t woken up he’s still a little bit weak but what we ask for is to go home to sustain his life

I don't believe this for one second.

Shrimpi · 26/04/2018 11:55

An MRI scan is non-invasive but it still means lying in an extremely noisy confined space with noone to hold or comfort you for at least 20 minutes.

Arguably, Alfie's negative experiences are very limited because of his brain deterioration. But surely it's got to be one or the other - his parents (and I don't necessarily blame them) seem to believe he can have positive experiences but refuse to accept that he can have any negative ones as a consequence of interventions. It's the duty of medical professionals looking after him to be objective and consider the reality not just what we would like to believe Alfie can or cannot experience.

Alfie could theoretically die alone in the MRI scanner, if that is the moment he goes. Or surrounded by chaos in the MRI room.

If that were to happen can you imagine in hindsight how foolish and unjustified the scan would appear to be?

Decisions have to be made with a view of the benefits to Alfie. He is a person with his own interests and rights. Not a political object. Not property.

GinSoakedItchyPony · 26/04/2018 11:55

Thanks to those who replied to my question about sedation, I thought it would be necessary but wasn't absolutely certain

Marmitesoldiers · 26/04/2018 11:55

sun how will it drain resources of mri staff, radiologists, anaesthetists etc to NOT have a scan. Given that there have been endless medical and legal opinions already, it seems highly unlikely to change the opinions of the parents because they are, and again understandably, reacting from emotions not cognitively. All the scan will do is confirm to the medical staff what they already know.

ShatnersWig · 26/04/2018 11:56

Parents INSIDE the hospital have heard chants of "Burn it down!" Someone else has tweeted that same statement.

Chief Inspector Chris Gibson said: 'Merseyside Police has been made aware of a number of social media posts which have been made with reference to Alder Hey Hospital and the ongoing situation involving Alfie Evans. 'I would like to make people aware that these posts are being monitored and remind social media users that any offences including malicious communications and threatening behaviour will be investigated and where necessary will be acted upon.'

I don't understand why some action hasn't already been taken in some cases. Everyone that blockaded the roads and stormed the hospital should have been arrested for public order offences. Anyone who has tweeted or phoned or said anything of the order of "murderer" or "cunt" to a member of staff should at least be spoken to. Anyone who revealed the names of staff in breach of a court order.

And I do mean ANYONE.