After the last goodbye.

[BongoJim]

I know the last thread was removed because there was too much speculation and I get that. I believe a lot of people shared a lot of personal stories and experiences which were important and gave powerful insights. Would we be able to continue the debate without the speculation (start your own topic for that) and instead just continue to debate where cases like this need to change going forward, how court processes can change as a result of such difficult cases and what lessons can be taken from this awful case without it being a thread about a thread? It would be a shame to lose being able to discuss every other aspect of an important debate just because one aspect of it is problematic for MN. Is it even possible to continue debating the wider implications thrown up by a case like this? If it's not then my all means MN please delete. 🥺

you can stream a funeral without getting sky involved.
hopefully they are oblivious to any back lash as they still have their AA and purple balloons and ribbons.

A funeral for this dear soul may take a while if there is a post mortem and an inquest. I hope no news channel agrees or even suggest filming, there would be no reason to, it is not in the public interest surely. It also reports that there has been negative SM trolling towards her but sadly that was probably to be expected. I hope she is getting some support away from the media.

Sky have been involved in this

The case was public interest as it was a court case. His funeral is absolutely not public interest and should be kept private. If the media films it and publishes it i think I would be inclined to put in a complaint.

The media need to stop entertaining them now as they are playing into slander and libel.

I wonder if there will be any response to a lot of us reporting the Sky interview to Ofgem. I got an email acknowledgement that they received it. The tide can turn very quickly.

Filming the funeral? Really?? Jeez. That would be appalling tasteless. Poor lad.

I think we can be reassured it won't be filmed.

I mean when exactly will it be broadcast, where and what is the target audience?

They can have it live streamed and get the link printed for anyone that does choose to watch it.

Facebook, tiktok, YouTube or similar. I hope they don't though. I often wonder what Paul's role is in everything so far as he has stayed out of the media spotlight from what I can tell. I can't imagine their pain and equally I can't imagine wanting to court the media in the way they have especially with the photos published so far.

What kind of investigation is it HD wants?

What kind of investigation is it HD wants?

Not sure if it's linked here. I've read it but remember where.

But it's mainly based on what she's being saying from the start.

Parents should have the right to make decisions for their children.

One thing I'm beginning to realise as these cases keep cropping up is that personality and entrenched beliefs play a lot into these situations. I think it's a security blanket reaction.

But I also am thinking for all our discussing how we can make sure cases aren't so public and protect all parties in future that they really are rare.

And I don't think from this latest case you'll ever convince some of them that they don't have rights over their child - just responsibilities towards them.

Plenty of people really do believe parents = always right where child is concerned.

Agreed. I think it probably comes down to the uncomfortable fact that although they may not see it, sometimes a parents decisions may not be the right ones when it comes to best interests because they are too close to make such impartial unemotional decisions. Sometimes what is in best interests is not the decision a parent is fighting for but the opposite, sadly. I've read some very interesting ideas on this thread an others but I just don't think there will be easy answers. We know sometimes decisions made by hospitals are not always the best ones, but just occasionally what a parent wants may not be best either. As you say, these are rare cases.

This is why we have Courts to make decisions in the best interest if the child. Any investigation or Inquest will look at what was or wasn't done by all involved.

Agree.

What what I have come to conclude over time of public cases and sue to the work I do - some people won't ever consider their opinion wrong whatever the outcome. And the more they are ruled against even with evidence the more Vidal they get to the contrary.

Which is why being courted my media can exploit them. Because they are entitled to their views and never accept the alternative narrative. But given a platform as someone mentioned above can mean the tide turns against them - and then who is there for them when they need it?

When in the public eye it's easy to believe you have a larger following than you do because you know you're teaching a wider audience.

That audience you think are following become your cheerleaders and followers in your head.

But given too much of a platform can be dangerous for people who are emotionally vulnerable - because the more they think people agree with what they say the more risk there is of them saying something that turns the tide.

It's dangerously sad

And if the media is always there to encourage them they aren't ever given time to reflect and digest and given a chance to process and maybe accept what's happened.

The trouble is that the people who run the AA FB website regard it as negative trolling just to report on what actually went on in court or to doubt the received version of the facts.

Oh dear.

I think it's worth repeating a post from a previous thread where the poster attended the funeral of a child who had been previously diagnosed with a terminal condition.

The circumstances were not the same (court cases) but the family had built up a large online "support army".

The funeral was apparently planned re: a venue with the expectation of significant media interest and swathes of mourners from the "army" - neither of which materialised.

The family said goodbye to their child in a half empty large setting, with the very visceral knowledge of how little the media who had courted interviews and all these "supporter's" really cared when effort went beyond using their keyboards or consideration of viewing numbers/online clickbait.

Already, despite online Q&A's and demands for an inquiry, mainstream (and social) media has moved on and the reporting of the family's views are falling off the radar.

I doubt any news service will cover the funeral other than to say it has taken place.

The sad truth is that the "story" has ended. There's no more public interest to be wrung out, no more clickbait to be found.

I hope the family can, in time, find a way to live with what's happened and create a space to both grieve and celebrate the child they lost.

Which is thankfully hoe it should be ,I don't know if the case you are referring too was one of the two very high profile cases of recent years ,but both those families very quickly faded from public life

Times article. I completely agree:

*
Because where I parted company with the doctors was in their preventing Archie’s parents from seeking alternative treatment once the decision had been made to remove the boy from life- support and thus effectively end his life. There was no conceivable logic to that rather peremptory course of action: it seemed pointlessly vindictive. If the doctors were correct that there was no hope for Archie and that he was “brain-stem dead”, it would surely occasion the child no discomfort if his parents were to move him somewhere — where exactly, who knows? — in the hope that some sort of miracle might have been occasioned.

For the immense and somewhat flawed machine of the NHS, with its implacable algorithms and absence of sentiment, Archie Battersbee was simply one of hundreds of thousands of people who die every year. Archie’s parents saw things a little differently: he was their son and if there was even the faintest glimmer of hope, they would cling to it.

I believe that was their right. Given that Archie was not in pain, indeed was incapable of feeling pain, what could be the objection — aside from the brutal assessment that it was a fool’s errand? Better a fool’s errand than the certainty of death. Even more pertinently, why should he not have been allowed to pass away “with dignity” (as his parents put it) in a hospice? The NHS lawyers said in a letter that any application to move Archie to a hospice would “be opposed on both a procedural basis and best interests basis”. How can it have been in his best interest to die — and if he had to, how could it have been against that interest to do so at the place of his parents’ choosing?

They added: “The trust continues to put Archie’s welfare and best interests at the forefront of its decision making about his care.” Moving him would entail a “significant risk”, according to the lawyers. But a risk of what? I think the answer lies in that phrase “procedural basis”. It was all about procedure.

Miracles, or their medical equivalent (that is, better treatment), do occur, occasionally. The parents of five-year-old Ashya King sparked a vindictive NHS and police hunt when they took him from hospital so that he might receive better treatment in Prague. Ashya had been suffering from medulloblastoma: he has been free from cancer for six years. Doctors wanted to turn off the life support for five-year-old Tafida Raqeeb, but her parents took her for treatment in Italy and she has improved to the degree that she may soon be able to return to the UK to live with her family.

Hollie Dance says that her son once gripped her hand as she sat beside his bed in hospital. Perhaps she was mistaken, perhaps she imagined it. That’s the most likely explanation, isn’t it? We are all fallible.

Because we do treat people however because we believe they can't feel it.

They were asked in court to name a consultant and hospital abroad that were offering treatment. They couldn't name anyone.

The truth is moving a patient managed and kept alive purely by the medicines they are receiving 24/7 is not in their best interests. You are in the likely hood of probabilities condemning them to a horrid death on route somewhere.

With AK there was no risk to move him but there was also no evidence that radiotherapy wouldn't work. Or that he wouldn't be cancer free still if that was the treatment he received.
PBT had a good reputation and statistics and the parents wanted that. It also had less reported side effects shirt and long term. I agreed with them btw and think it's very telling we now have PBT centres in the UK.
I'm not sure why the hospital were so dead set in them not seeking PBT because my own ds is under that hospital (also neuro dept) and they generally really good.

I think of all the past 3 public cases the most recent was the clearest - read the court documents it explains it all.

With the previous case where a Dr offered experimental treatment that was proven to be successful - and the hospital agreed to fund it - I've always been suspicious why it took so long for them to come and access the boy and start treatment and it was too late by the time they could. For me the timescales would be what I was questioning and can see why the parents started a fight because they'd been given hope and it was taken away.
But the truth is by the time it was arranged he was too ill for treatment and wasn't ever going to make a recovery due to the nature of the condition.

@Geccochebello at the risk of sounding callous, I completely disagree with the Times article. I think the stark truth of what is being dealt with here is how difficult it is to accept the finality of death, and how easy it is to slip into the delusion of thinking that, with the benefit of modern technological and medical 'miracles' death can be cheated. I think the reality is that in calling Archie 'brain stem dead' they were in fact calling him dead, and only modern legal nuances and technicalities and the particular circumstances of this case prevented that being a certified fact. The logical extension of the Times article is that by extending such facilities to families deranged by their circumstances we will start to see a stream of dead bodies being hawked about from pillar to post in the hope of 'treatment', using resources meant for the living, not the dead, and attended upon by a tranche of people unable to speak hard truths because it will somehow have become established as all right to have corpses hooked up to machines that cannot benefit them, and are therefore being kept from benefitting anyone else. Which would truly be obscene.

@Geccochebello I think the Archie Battersbee case was so stark though because brain stem dead is actually dead - there was no hope, no room for a miracle and how long can you spend on trying to save someone who simply cannot be saved.

We seem to have reached a place where death seems to be something you can fight, something that can be overcome, something that can be prevented. Whereas the truth is it is inevitable, everyone of us will one day die no matter what we do.

If the process should be overhauled I think it should be in the procedure not the policy. How these things are put across to relatives, the help and support in place so that a decision is made together

Alongside perhaps a understanding of the limitations of a NHS - and how other treatment options can be made available but that perhaps is far too complicated

Archie didn't have a glimmer of hope and how long can the NHS be expected to use its valuable resources, to keep a dead child artificially alive because his parents can't accept what's happened ,that's not fair on anyone least of all Archie .

Presumably that Times article is just the view of one journalist who may have a bit of of a controversial past.

Who wrote the Times article? It seems to be either someone with an agenda or someone who is not very bright - in fact I would put money on their having read none of the judgments.

The suggestions of taking Archie off for alternative treatment were clearly never going to get off the ground, otherwise the hospitals in question would have come forward three months ago and we would have heard about what would be a truly miraculous new treatment.

The reasons for not taking him to a hospice were clearly and empathetically explained in Judge Theis' judgment, and were unassailable. The simple fact is that the child's best interests come first while he is breathing and has a heartbeat, and what parents want must come second to that every time. Neither this article nor anyone else I have come across talking about this case have ever come up with any reason why that principle should change.

One of the procedural things that started the court case was the fact brain stem testing couldn't be carried out without the agreement of parents.

Now I'm not suggesting we remove rights to a say in care and the courts do have a place here and rules the testing should be done but by this point it had been 2 weeks since being transferred and another week until they had the ruling but which time the tests were futile and then after another week when they ruled not being able to state brain stem dead you already had an even more adversarial situation and one sentence that the family held onto.

Which then gave way for the media to use language that wasn't factually correct (neither incorrect) and groups like CLC to jump onboard.

I agree with those who have said better counselling and mediation early in could prevent this.

Yes Its, maybe if he had been diagnosed earlier then maybe he would have been stable enough to move to a hospice. Thousands of children and adults die every year, and just because hospitals or relatives use the Courts it doesnt mean the media have to get involved.