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. 🥺

Thank you for starting this thread, i found the last one very insightful and informative although it did go off the rails a bit sometimes. It was a tragic case for the family, but I do think there needs to be change in the ways these situations are reported and the staff given better protection but I have no idea how they would do that because the staff are rightly never able to discuss individual cases or defend any allegations made against them.

i think the press should be mindful about what they print in these respects

@heldinadream the chaplain often takes that role. Hospitals tend to have chaplains of every faith and none, that can minister to families in extremis.

Perhaps we need more of them- they are people who walk alongside families through these journeys, and have wider perspective on what's happening.

I suspect in some cases there simply isn't enough that can be done- the resistance to any message except the one the family want to hear is simply too strong.

My mum was determined not to believe my dad's prognosis. She interfered with his medication, prevented any attempt at getting his affairs in order. She was his NOK so there was little we could do. She had a lot of support and counselling but steadfastly rejected anything that approached the truth. She even stopped the hospice choir they attended, because some of the songs were emotional.

There are things that need addressing. That said, sometimes the exception proves the rule. This case may illustrate how well things usually work, and there's just small tweaks needed.

And I think people need to involve referring to specific cases and families, especially the people who are shouting about how disgusting this thread is!

There is a conversation that needs to be had about how certain situations are handled, to the benefit of all parties. That's not trashing anyone in particular, so don't claim it is!

So in this case the judge did get better at anticipating further arguments that would be invalid (a move to a hospice, treatment abroad, and different types of palliative care), and dealing with them all in the same hearing. It meant that there was one last hearing, and one last appeal, rather than several more rounds.

I think the issue was they were dealing with the CLC who were very clever at exploiting loopholes.

It does seem there is a strong argument for better management all round and on a number of levels both practical and ethical. The way cases are jumped on by organisations like the Christian Centre seems to be a particular concern as it does appear that grieving families who are swept up in it are obviously looking at what the organisation can do for them personally without necessarily putting too much thought into the hidden agendas of these organisations who are using families as a vehicle to forward their own rather troubling agendas. I'm also thinking that press restrictions may well afford protection from too much intrusion. Of course much depends on how compliant people are not to reveal details but I don't think there's much disagreement on that. I agree the court system must be there to be used but I can also see how it can be used in a way that is less beneficial.

One thing I would like to see is the opening of hospice style units, attached to hospitals, personally I feel that acute hospital wards and icu may not always the right place for patients who are nearing the end of their life, regardless of age and siderooms are no longer always an option as covid has shown us. , obviously funding, creating space and staffing would be quite a hurdle.

I actually think that would be an amazing idea. Frees up ICU for critically ill patients who have a chance to survive and gives family a safe space to come to terms with the end.

I think the issue for this specific case is that he needed to be within an ICU, with 2:1 nursing, as he simply wasn't stable enough.

Definitely for other patients who aren't quite as poorly but can't travel to a hospice though.

I actually think that would be an amazing idea. Frees up ICU for critically ill patients who have a chance to survive and gives family a safe space to come to terms with the end.

But if the intention is to move the patient there for EOL/palliative care only, there will still be cases where the family disagree and want active treatment to continue, so you'd be back at court.

I understand what you are saying but there are patients, adults and children, who are in critical care beds that perhaps they no longer benefit from because there are not enough ward beds to move them to. Not all "disputed" cases in all settings in hospitals go to Court.

Oh I agree some cases would still end up in court i just meant in general cases where the family aren't disputing it it would be lovely.

Also in cases where they do dispute it and it goes to court at least there would be a hospice on the grounds to move them to should the family not want the patient in hospital anymore after a relationship break down. Otherwise some hospices are too far away to move them.

BongoJim Press restrictions on families is not the way to go at all. I can't help noticing that you are ignoring the cases where people have spoken out publicly about poor care in order to stop care homes, trusts or local authorities from hiding abusive or poor care practices. Yes you might think this case has been difficult and upsetting but this is the price of having freedom to speak out and hold services and powerful organisations to account. I do not wish these rights to be eroded.

Archie Battersbee: No parent must go through this again - family www.bbc.co.uk/news/uk-england-essex-62455467

It looks like his parents are requesting an investigation in to his circumstances.

From what the article says, they feel "stripped of rights" etc and should have been able to make decisions.

Their position still seems worlds apart from the courts judgements & hospital's view.

I don't think this issue can ever be reconciled for them.

Of course poor care and abuse needs to be publicised and fully investigated but maybe patients unable to consent need protecting too and staff given the opportunity to defend themselves against allegations and abuse without fear of physical attack or losing their jobs.

It’s also really interesting how many parents don’t understand that there is t really anything in UK law about parental rights. As a parent you don’t have specific rights, you have responsibilities. Which are largely to ensure you act in your child’s best interest, but no rights as such.

I cant believe whats happening now.

www.bbc.co.uk/news/uk-england-birmingham-50661612

Tell me HappyHamsters - where would this famy be if they had not publicised their daughters situation in the media?

@MsBallen the local bishop got inundated with 3000 emails from the ' Army' demanding that he intervene. And the Pope then getting involved was really unhelpful,particularly for family that had never darkened the door of their local church.

I've not said to stop freedom of speech?

I e said responsible reporting via the media to protect both parties.

The media outlets in the most recent high profile case have left a grieving parent open to a case for slander. Ok - it's unlikely. But the media have allowed someone uk era me to make very slanderous statements repeatedly and without challenge.

I think that's irresponsible.

inews.co.uk/news/health/autism-learning-difficulties-locked-unit-mental-health-mencap-271626

Tell me how would this family have extricated their child from this environment without press and media attention? The hospital would no doubt have moved to prevent the parents speaking out under the guise of 'protecting privacy. The unintended consequences of what some people are suggesting here would be to cause serious harm to the rights of those with disabilities who cannot advocate for themselves. The idea that the state can be trusted implicitly and without scrutiny is just wrong as these cases illustrate.

This is what I feel went wrong. So many personal stories were shared and a much wider discussion was sparked which was interesting. That's the discussion I'm hoping to continue because it really was quite thought provoking.

Agree. Such a shame new posters to the king running threads along and got it deleted.

So many families who'd had to make the very decision to to EOL were so helpful in getting people to understand and brave to share their stories.

Itsgetyingweird. If parents cannot talk about the care of their relative and name the organisation then that is restricting freedom of speech.

H*eldinadream
*
Your post at 10am is brilliant.

The media need to stop doing interviews and reporting this now ,Hollie will feel how she feels but ,all this media attention is just like egging her on its unfair to her .