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. 🥺

All I can say it's it's terribly tragic and my heart goes out to the parents. What an awful situation. I feel it's too early for debate.

It's not being debated.

Cases like what? I didn't see the other thread

As a HCP I feel strongly that healthcare is safer for everyone when people are able to disagree with us, and go to court if necessary.

I don't want healthcare professionals to be seen as elevated and untouchable.

That said, I can see merit in looking at anonymity for the children concerned and the hospital involved in future cases. Even if the anonymity is only followed by MSM as social media is harder to manage, campaigns and armies would have less attention and limited traction.

It's bad enough that untruths have been able to circulate unchallenged, but in addition to that, staff providing the very best care that they can have been called murderers. It's sadly not too much of a stretch to think that there is a real risk of physical harm from supporters who have been whipped into a frenzy.

Completely see where you're coming from. What about the legal framework that's in place? Given the potential for legal arguments that don't apply or wouldn't get off the ground being used to frustrate processes, do you think there's an argument for tightening up what arguments can be used in each individual case and how many different levels of appeal are appropriate? Is there a time to say enough is enough I suppose? Particularly where dubious legal representatives are purposely raising arguments without merit?

Fortunately cases with protracted legal battles are rare. As discussed on the threads sadly many people including children are diagnosed with brain stem death every day and their treatment withdrawn.

It's like the saying that it is better that ten guilty persons escape than that one innocent suffer. Awful as the court circus became, it worked. It demonstrated fairness, compassion and reasonableness and an absolute determination to look at the medical evidence and put a child's well-being at the centre of it.

It may be possible to learn lessons, and ultimately reduce the timescales of the legal process, which could be a good thing. But my take home is that the legal system, like the healthcare system did its job well. And that's a good thing.

I think that children should be afforded anonymity in cases like this and pictures of them in hospital forbidden. Social media is harder to control but platforms need to be stricter in what they allow. I don't know how they would go that though. SM is too wide open and therefore open to all sorts of inappropriate posts but then there's freedom of speech and freedom of expression. We don't want to lose that but finding balance is impossible I think. In cases such as these there should be a total lock down on identifying information with parties not allowed to discuss the case on social media and the child referred to as child A for example. This would protect the child at the centre of it all, the family and the professionals caring for the child.

I agree. I think the system has shown to work. I'm particularly surprised at how quickly European courts can work in extreme circumstances but all I would say is that it does seem rather convoluted when appeal after appeal after appeal can be launched and in spite of the futility of arguments it can still stall the process for a significant amount of time.

Thee should be restrictions on what is published.
There must always be freedom to speak though, even if what you say is rubbish.

The things people aren't allowed to say are really important.
There have been times when it was indecent to talk about interracial marriage.
Times when you'd get executed for suggesting the Earth goes around the sun.

Incitement to hatred is unacceptable- no staff should be named, or threatened in anyway.

Definitely agree. I think press blackouts should be used to protect children involved and there needs to be anonymity. Of course you can't force family members to respect that but I think there's a time where taking pictures of the reality is not wise.

Children should be protected with anonymity in cases like this. I also think something needs to be done about Go Fund Me/ fundraisers, although I confess I’m not sure what. It makes me uncomfortable that people donate in good faith but without any protection that the money will be used for the purposes it was donated for. I think this was an issue with donations made for Alfie Evans?

I also think that legal aid should support the families in these situations. I know what Archie’s family were supported pro bono, but if families in future are faced with costs and can’t meet them… it doesn’t seem right that some could be able to challenge these life and death decisions, whereas other families may also want to but not be able to afford it.

Really interesting concepts to discuss in these cases. A few of my thoughts:

∆ parents should absolutely be able to go to court if family and hospital cannot agree as Drs are not infallible. There was a case a few years ago where the child had a brain tumour and the parents wanted him to have experimental treatment in Prague but NHS Drs said no. Court ended up agreeing and child was made ward of court. Parents took him to Prague for treatment anyway and the treatment worked but the parents were still arrested.

∆Appeals should be allowed if new evidence comes to light or if either side feels they were misrepresented and not heard.

∆ if you fail appeals i don't think you should be allowed to appeal to the European court of human rights. Our laws are already alined with theirs so they shouldn't be involved. I also think if you fail appeals and no new evidence emerges a date and time should be set in stone and followed through, and talks of removing a patient or not should already be discussed within that same hearing to avoid having ten different hearings over the same patient.

∆ parents should not be banned from taking photos of their own child even in EOL however there should be a ban on distributing those images to the public.

∆ The media should be banned from naming the patient and hosting interviews with vulnerable relatives. The parents can still name their child online for support but should be banned from discussing anything court related.

Agree that the case itself should be reported because it’s absolutely in the public interest, but all the parties to it, including the hospital, should be anonymous.

Thank you for starting a new thread. There was some interesting medical and legal info, and some very sad personal stories on the previous one.

In cases such as these there should be a total lock down on identifying information with parties not allowed to discuss the case on social media and the child referred to as child A for example.

In the majority of cases of this type, the child and the hospital are anonymous. The problems arise I think when the parents go public before the case comes to court. The information is then out there and can't be taken back.

Plus public interest requires that the judgement and evidence be published, and even if the judgement refers to 'Child A', anyone reading could put 2 + 2 together if the child's details are already in the public domain.

I agree these circuses are extremely unedifying, but not sure what the answer is.

I think (well, at least I hope) that so many personal stories and really important information came to light from the last discussions that the topic has now evolved enough to look outside an individual story and explore wider context of the impact these situations can have as a whole.

I can see that anonymity would have made an enormous difference not necessarily to the huge debates sparked, but certainly to the pressure placed on hospital staff if there was a ban on naming the hospital and the patient. Also just how much those concerned are allowed to reveal on social media.

I'd also agree legal aid should be available so that families do not find themselves at the mercy of organisations which have an ulterior motive to take cases on. I'm comfortable with the effectiveness of courts in these situations but a little less easy at the appeal after appeal after appeal when it's already clear no positive change can come from it and it works against the best interests of the patient.

It would be incredibly dangerous to say this type of case somehow isn't worthy of access to the same appeal system as is available for all other cases.

Oh I'm looking more at the actual arguments put forward where there's evidence that there is sadly no hope. Evaluation of a situation which can only have one outcome would possibly negate the need for repeat appeals when nothing can come from them anyway. I'm other cases it may be that arguments can be put forward which would change outcomes.

I know what I'm trying to say but not sure if I'm articulating it very well 😕

I don't see the point in starting a new thread, it'll only attract negativity again. People can't help themselves on here, being horrible, slating the family, not knowing the facts etc. Archie has passed peacefully and that's all that matters. This will just turn into a debate.

I don't think that's true.

I think the majority of those are within the army page.

Most people here and elsewhere have read the court transcripts.

100% agree with this.

So utterly heartbreaking for everyone involved, moreover the parents and immediate family and friends.

I agree that there should be a media blackout and anonymity for the child but how do you police that on social media? Are the police really going to arrest a grieving family for going public on their FB or Insta with what they are going through during such a traumatic time?

I think that children should be afforded anonymity in cases like this and pictures of them in hospital forbidden

I agree, but in practice there’s no point in saying no one reporting can use a picture if the parents are putting pics on social media.

Saying no pictures of any child in hospital, as hospital policy would be an option but difficult to enforce - and who would do it? Plus, hospitals themselves have “fun” dress up ward rounds and celeb visitors or whatever and publicise those pictures, with children in them, themselves. There’d also be a few long term teens with cancer or cystic fibrosis who spend weeks in hospital at a time and need to be able to FaceTime friends.

The legal wrangling in this recent case was painful and facilitated by the very deep pockets of the CLC, but I agree necessary.

The harms, as I see them, were:

• hospital staff being identified and the hospital being accused of harming/murdering the child


• pics of the emaciated child in a nappy being disseminated on social media. All pictures of monitors, lines etc being publicised

I agree the MSM were reporting irresponsibility, but it was ever thus, and difficult to legislate against if media coverage is being actively courted by a family member.

Maybe hospitals need a clear social media policy - no filming, no pictures to be posted without their - the hospital’s - consent? Although I’m sure, in this recent case, the child’s parents were told to stop

It would probably only work if it was a law, punishable by a hefty fine, or whatever. Maybe the rules could be outlined as part of admission paperwork with specific exemptions to be discussed with a particular staff member. Exemptions could be for long term teen patients who could FaceTime, SnapChat or whatever.

I'm unsure of what could be changed.

The legal system worked (in the end) and it's absolutely right that families should have access to legal redress when the best interests of the patient are disputed between them and HCP's.

Thankfully such cases are rare, though sadly not the circumstances where many parents are in a position to make the decision to withdraw treatment.

Fundamentally (and I'm going to word this carefully) there will always be situations where some families (perhaps for legitimate reasons) have a deeply seated mistrust of authority and state services.

Changing the process/status quo imho isn't going to result in any meaningful difference, because any changes are "state sponsored" and thus not to be trusted.

Generally I think the system works and we need to be careful and realistic about changing it to accommodate rare responses.