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.

" I said anything practicable. If the medical staff feel that an MRI is practicable - not detrimental to Alfie, eg not requiring intubation/ventilation - then performing it might help the parents finally come to terms with Alfie's condition, which can only help Alfie."
I think a further scan would be of no benefit to Alfie -- previously in was extra information needed to help make medical and legal decisions. But those decisions have been made. The only remaining issue, is to help his parents, yes? Which is, in effect, arguing for cases such as extending someone death because the parents/relatives want it. Saying that not letting granny go now benefits her because when she does go, her kids will be happier, is a rather convoluted claim for benefit! Who comes first, that's the key, and I'm really uncomfortable with the idea of doing something possibly harmful and of no direct benefit to a patient because it might make others happier. Again, he should not be experimented on to satisfy others curiosity, or happiness, when that act is of no possible direct benefit to him. If you consent to become an experimental subject, then you can chose to undergo medically-unjustified procedures for 'the greater good', but he cannot. Hence why I think I use experimental in this case.

The court proceedings haven't relaxed patient confidentiality rules though mightymucks- I know you said that and it's wrong. Exactly the normal rules surrounding confidentiality have applied to AH in this case, both in court and out. They have not been relaxed. Some of us think maybe they should be.

By all means disagree with this but do so in the knowledge that the normal confidentiality rules being applied have prevented them from addressing many of the criticisms against them.

My own view is that there should be as much equality between the parties as possible, so I want legal aid for parents in cases like this and the right of reply for the hospital.

Jesus Christ. Some caller claiming the doctors want to euthanise him and that he went into hospital healthy. And the doctors made him ill. Where the hell do these people come from.

If the medical staff feel that an MRI is practicable - not detrimental to Alfie, eg not requiring intubation/ventilation - then performing it might help the parents finally come to terms with Alfie's condition, which can only help Alfie.

I don't think the parents, but particularly the father, are ever going to come to terms with Alfie's condition. It's just gone on for too long and at too greater cost. They have invested so much of themselves in denying their son's condition.

These are the father's comments in his sworn Witness Statement from a day or so ago. (They have been published in the public domain - so not leaked by anyone.)

13. Further, it is clear that Alder Hey has let Alfie down badly, by incorrectly assessing his condition; persisting in that assessment in the face of inconsistent up to date evidence such as the videos, and our observations; and refusing even to talk to an eminent colleague - the president of Bambino Gisu who urgently came to Liverpool yesterday – for the fear she might contradict their view. We feel that Alder Hey would now rather let Alfie die unnecessarily than admit their mistake. We no longer have any trust in Alder Hey, and that trust cannot be restored. In these circumstances, it is not in Alfie's best interests to continue to be treated or cared for at Alder Hey.

15. With the greatest respect, we make similar criticism of the Courts, who have uncritically accepted the 'consensus' expert view. …

16. We feel that we are trapped in a cruel bureaucracy; and we have not received justice...

An MRI can't change that sort of mindset and relationship breakdown.

What I pasted was from the transcript of TE talking to the press.
The full report and video of this is linked to below.
I have utmost sympathy for everyone affected by this situation including AE’s parents who I believe have been maliciously manipulated by others for their own agendas and presented with false hopes.
The video shows have they have still not accepted the reality of the situation and believe that in taking their son home they can sustain him to overcome his illness. This obviously causes problems with their request to do so.
I do believe that legal action should be taken against those who have IMO been instrumental in creating this situation.
We live in a country which proudly defends its right to freedom of speech. However, again in IMO, when this freedom of speech impacts on others and causes serious harm to many, including patients, parents and HCPs at AH, then action needs to be taken.

www.express.co.uk/news/uk/951419/alfie-evans-update-latest-news-Facebook-baby-alder-hey-liverpool-petition-live

@Shrimpi. Thank you - your posts on these threads have demonstrated not only your knowledge but great clarity of thought.

Birdsgottafly
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.

The bottom line is that this is not about what the father WANTS. There is only one priority and that is what Alfie NEEDS and the AH medical staff are best placed to know the answer to that.

MRIs are not nice, they are extremely noisy, it would mean unnecessarily moving Alfie and to achieve what? To discover that another 10% of his brain has liquefied? Then what? How is that going to help him?

That statement was drafted by the of a from the CLC, who appears to have only passing familiarity with the rules of drafting witness statements.

It may represent the gist of TE's current thinking, but it is not his own words.

I think that all of Alfie's Army, including the family themselves need to try and imagine themselves in a position where their brain had deteriorated to almost nothing, they couldn't see or hear, they were paralysed, they had no consciousness, and they were finding it increasingly difficult to breathe.

Then they need to ask themselves: would I rather be allowed to peacefully slip away, or would I want someone trying to resuscitate me either by mouth or machine, and then move me to another country where I would still have no hope of recovery but would be kept alive in that state indefinitely.

I know what most adults would choose. Just because Alfie is a small child doesnt mean he deserves anything different.

I've been reading and not posting but decided I should share my own story as others have done.

In most cases, EOL care is evidence of, not giving up on a loved one, but of absolute love for the loved one. Love is about being selfless.

My mum had a head injury where the healing process didn't stop and instead become a destructive process which ate away at her brain Eventually we came to the conclusion that we should stop bullying her to eat (because that's what we were doing ) and allow her to go peacefully. She didn't want to eat and in the last few days of her life just had mouth care - gel/moisture swabs (that looked a bit like lollipops) as she could no longer swallow. The last thing I did for her (a few hours before she died) was to massage her hands and arms with a lovely lavender scented cream. I'm not sure how much she was aware - as by that point she'd also lost the ability to talk.

It's a horrible thing to watch the person you love disappear in front of you - but we feel no guilt for having made the decision to stop sustaining her, as all she was doing was existing (and in as much as she was aware, hating that - so that the one thing she could do, control if she wanted to eat, she chose to stop doing).

I still miss her, but she had gone a long time before she actually died.

Picking up what derxa was staying, my dad (who loved my mum dearly) was a cattle-farmer who then trained to be a doctor. He was/is very matter of fact with regards to life and death. As an atheist, he hated it when people would say "She's in a better place now" or "She's at peace". He would retort (not usually to their face but often to me later), "She's dead. That's the end of it". But we were happy that she was no longer suffering. It might help others to think that people have "moved on" when they've died, but not everyone.

On the positive side, my mum's well-documented brain (from scan following her accident to her death 5 years later) might help increase understanding of the proteins that were involved in destroying her brain and how they can switch it off (which might also help things like Alzheimer's and/or post concussion injuries) just wish the research had been far enough along to save her

I’ve deliberately turned over radio 2, as I can’t listen. Especially as Jeremy Vine generally asks the most stupid questions.

I love the NHS and the consultants are often amazing, but they are heavily invested in keeping the status quo and innovation is difficult in a centralized system.

This. Exactly. There is also a heavy bias to ‘the NHS is always right’ and you must accept what it says.

Incidentally, for all the people horrified by the treatment of the hospital: the Mid Staffs whistleblowers were subjected to horrendous abuse and threats too, by NHS staff and left wing activists for exposing horrendous abuse and neglect.

Although never right, it’s not something which is unique to those who oppose the NHS. These are contentious issues and abuse can come from all sides.

prettybird what a moving post. I couldn’t agree with you more. I hope my family would show me the same devotion as you showed your mum.

The Witness Statement was drafted by the xxx law student, but their gist does seem to be corroborated by the father's televised interviews.

Mightymucks I agree with you about whistleblowing in the NHS. It’s appalling how they’re treated. However you’re conflating two things. AFAIK there’s no evidence of neglect or ill-treatment in this case. Far from it. It’s a difference in how to proceed with the treatment and it has been tested in the courts.

I hope the parents are allowed to take him home. As for them trying to take him to Italy, do people really think a plane/helicopter would be able to land in a garden and whisk them off? Not to mention it causing a serious diplomatic incident.

That is absolute nonsense

Is it true they now want to take him home with a private doctor and private nursing, if he can't they will go to court again. What's this about another demonstration at Buckingham palace this afternoon, what's that hoping to achieve. Poor little Alfie, I hope he is comfortable.

SilverySurfer, there is dispute over Alfie's treatment. We have another Doctor, Dr Izabela Pałgan, a pediatrician and children’s oncologist from Bydgoszcz in Poland, claiming that AH is wrong. They do have to show the World that they aren't.

If they are right about Alfie, it doesn't matter how noisy etc a MRI is. I was asked if i'd ever had one, i've had three, I know what they are like. I also have accompanied my Service Users when having them.

Any type of Care isn't just about what the Child needs, there is a level of working with the Family. We cannot hand Doctors, Scientists absolute power. Do we not remember the days when Surgeons decide to end pregnancies, without consent and do other procedures?

As for AH being Alfie's home, because he's been there so long. Well so did the people wrongfully held in institutions, because of their disabilities, who we then realised had a right to live (and die) in a proper home, like everyone else.

Is the stuff about the Mid Staffs whistleblowers supposed to be relevant, or helpful? We know the NHS can do appalling things. That's not related to whether people threatening to storm the place, set off the fire alarm during children's operations etc are behaving in a disgraceful and inexcusable way.

I've experienced clinical negligence in the NHS myself, plus active lying about it, fwiw. I still know that's got nothing to do with this case.

Only one British newspaper is reporting anything said about this Polish doctor. Given that the father's barrister said that there was no new medical evidence only yesterday, when and how is this doctor in a position to comment? It is abundantly clear that she hasn't examined the child or that would have been reported. I suspect this is another "diagnosis" by looking at notes. This happened previously in both this case and Gard and those doctors were later proved to be incorrect.

We have another Doctor, Dr Izabela Pałgan, a pediatrician and children’s oncologist from Bydgoszcz in Poland, claiming that AH is wrong. They do have to show the World that they aren't.

As far as I know, that doctor hasn’t even laid eyes on Alfie, let alone examined him. It’s highly unethical and dubious for that doctor to pronounce on Alfie’s condition and prognosis. I’m surprised you can’t see that.