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.

kirinm i never said it did. But that hasn't stopped the protesters getting as many people to join them today, which will them spark more interest, especially from oversees press.

birdsgotta so ALfie should have another MRI with all of that entails to appease the queen, Joan from down the road, Jamie the neighbour and a Polish doctor who’s never met him?

What do you envisage the legal reps and spokesperson doing birds? There'd need to be another hearing for the reps to get involved again, for a start. I don't think one's been set yet, has it? I know the parents have talked of one.

I do think this sub-discussion about AH needing to comment vs having a duty not to show we as a society need to think about, next time something like this happens, whether patient confidentiality rules need to be changed. Because it will happen again and more exploitative charlatans will come forward.

Cuntinuous I agree. I think if a parent starts mouthing off to the media, in effect breaking any confidentiality themselves, the hospital should be permitted equal "right to reply". It's not fair that TE can go on every TV show and radio show and say whatever he likes - often completely inaccurately - and the hospital not be able to address it should they wish (they may choose not to, of course).

The problem is the patient hasn't breached confidentially - the patient in this case is completely unable to do so. If Mr Bloggs wants to talk about his medical issues on the TV fair enough for the medical professionals to full right of reply but sadly this isn't the case.

@prettybird your post is beautiful.

Effrig- Indeed.

My mum (81) was found unconscious in her bed. The ambulance took her to the local DGH (I was with her), where she had a CT head scan.

It demonstrated what was suspected- a haemorrhage.

The stroke senior reg came to talk to me. There was palpable relief when I told her I'd seen the CT and I knew that it was effectively 'all over' for mum. I knew they'd keep her warm and on sufficient drugs to alleviate any pain she was in, but I agreed with withdrawal of treatment (the LCP, in fact!). I asked for 'no heroics'.

So 5 days later, mum passed in the corner bed of a 6 bedder ward, in a calm, hushed environment. We were offered a hospice but the doctor warned us that as it was Friday, the hospice might not be able to up mum's drugs as necessary over the weekend so we opted to stay put. The reg spoke to me later and expressed how hard it increasingly was to convince people that nothing more could be done apart from keeping elderly people alive on ventilators til the inevitable happened. I didn't want that for mum.

But I guess the big difference between me and many is that I am a HCP and I know what a 'curtains' CT (and MRI) scan look like when I see one. And thankfully my non-medical DB didn't need convincing.

Spam88 that's a really good point about Ashya King having to have whole brain/spinal treatment anyway. However, proton beam therapy is indeed going to be used for this type of brain tumour starting in 18/19 in this country because a study (not conducted in the UK where it wasn't possible at all) found it had fewer side effects.

This is exactly what I'm saying. What they were insisting was 'the truth' in a report in 2015 has been modified by new scientific information in 2016 and will likely change protocols within 5 years.

The delay in treatment was a significant downside of going abroad and hopefully in the future, NHS patients won't have to make that choice.

There are often competing and contrasting opinions between medics on what ought to be done, and it's not wrong to seek them and take your children to other countries if you think the treatment there is better and you can afford to do so. The state should only interfere where there is clear evidence of harm, and I don't think that was demonstrated in the case.

CuntinuousMingeprovement, personally, at the point of the storming the Hospital, they had the excuse to delay things, because Alfie had been granted Italian Citizenship. A meeting between AH, Their legal team and input from the Police should have been held to decide a proper plan that they were all clear on.

I was awake the night they took the ventilator away. i have health issues and often cannot sleep. The Police didn't know if they could take the oxygen, the Masks etc, it was a shambles.

I was a CP SW, sometimes things are halted, so everyone (the services) can get on the same page.

I live minuets away from AH. They part were the scrambler bike crew come from. If they decide to riot and they do, for fun. They love trying to outrun the Matrix. then my area will be chaos and the Police will barely be able to keep a lid on it.

There are wider issues to consider and prepare for.

I view this as the other aspect of equality of arms.

Parents in cases like this should get legal aid in the same way as care proceedings, and it's disgraceful that they don't. AH get state funded legal representation but parents have to rely on the goodwill of the legal profession, sometimes leaving themselves vulnerable to exploitation from bandwagon jumpers.

Meanwhile the parents can say whatever they like, and it's not like the hospital can realistically take action for defamation, and the hospital has no right of reply. They effectively get to use the media and in particular social media as a weapon with no comeback.

Both things should be equalised. That said, even in care cases there isn't funding to bring endless, pointless, legally nonsensical appeals. Parents in care cases wouldn't have been able to get funding for eg the habeus corpus thing last week, or the recent free movement arguments, or to go before the court to argue that the rights of the child shouldn't be prioritised. So unless the funding model was extended we might still get CLC situations.

FlyingBird read the whole of what I had to say. The Guardian did their job and once the Court made it's Judgement they are no longer relevant.

Sorry I'm not sure the point you're making there birds. Was that in response to me asking you what you thought the hospitals legal team and reps could do? I'm sorry about your health problems of course.

I agree that it's ridiculous that the parents haven't been given legal aid. It has caused no end of issues that people with their own agendas have entered the area so to speak.

Legal aid for this type of work doesn't exist, I don't think it ever has. We need to create it. In care proceedings, there are no income limits, unlike with a lot of other areas of legal aid and I think that should be the same here.

Legal aid should be available. That's the point.

Birdsgottafly

Oh, I must have missed the news about Alfie having been examined by Polish doctors - can you provide a link please?

If they have not actually examined him how did they come to their conclusion that the AH is wrong? Osmosis? ESP? Tarot Cards?

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.

It's not about handing medical staff absolute power, it's about always remembering the primary objective which in this case is what is best for Alfie and frankly it's pretty obvious by their words and deeds that the parents, in their current emotional state are not capable of doing that which is why the courts have ruled as they have. For the same reason I don't see how it would now be possible for Alfie to be allowed to go home - wherever home is, I understand the parents don't live together and are no longer in a relationship.

Would legal aid be funding all of these endless appeals? Or would some sort of cut-off be applied?

In exceptional cases such as this there should be legal aid. The NHS are represented, the source of which is effectively public money so the other side should be given the same courtesy. I'm convinced this would've saved a lot of heartache and expense on both sides.

@brogueish palliative care and end of life care are slightly different. Palliative is caring for someone with a terminal illness and managing pain and dignity etc. You can have palliative care alongside chemo for example, but chemo that is not going to cure just extend expectancy.

End of life care is literally that I think, a plan of care for when death is near. Not sure on the timescales though.

Like so many others here I've made the decision to withdraw care and sat beside someone as they slipped away. The ICU staff were amazing. I'm not saying that decision is easy but keeping someone alive, attempting resus, forcing them to eat. It comes to a point. You can't.

Another MRI isn't going to a pleasant experience and surely he'd have to be intubated again. That poor boy shouldn't suffer to appease the army.

I have sympathy for TE because he's going through hell, I hope he can do the right thing and stop fighting for the sake of fighting. I don't think he will though.

There's a deathcab for cutie song I listened to on repeat in the relatives room called What Sarah Said. "love is watching someone die".

No words