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. 🥺

No they aren't beyond reproach.

Neither is the education system and LA which I both work for and have taken to tribunal (and won against).

No one is suggesting not challenging.

The concern is when vulnerable people are taken advantage of by groups with an agenda.

Concern is when they are - what we feel exploited - by media who want click bate and allowed to have rants in tv in an emotional state and say things that could get them in trouble legally.

What people are trying to discuss is how we can protect ALL parties in cases like these.

If we had better mediation systems to support and guide parents (someone unthread said they tended to be less educated and felt scared of authority) we could perhaps stop these cases becoming about public media circus and support those on their darkest hour of need.

I wonder if anyone ever say anyone down over the last 5 years where these cases have occurred and asked them from the off what their fears are? What is it they expect to happen?

The only time I think this was done was the AK case and that was more a disagreement about the treatment to be provided rather than whether to treat.

And fwiw I was on the parents side with this one and I'm glad they spoke out because we now have PBT centres in the uk because it is a safer treatment.
But I don't remember them making any statements accusing staff of wanting their child to die. They accepted the treatment the hospital proposed had a good success rate, their issue was the side effects are greater and they didn't want that.

I have never seen any concerns about his dignity or his inability to give consent.

There were definitely concerns raised on MN about it. Here's one such thread but it was discussed on others.

www.mumsnet.com/talk/coronavirus/4200378-Derek-Draper-an-invasion-of-privacy

There are many cases where people with asd or learning disabilities or mental health issues have been terribly treated. Most of the abuse is uncovered when relatives carers and sometimes whistlblowers speak out against the institution. This is invaluable

Since this happened to my own son I obviously agree about the importance of speaking up, but as ever it depends how it's done - and creating a mare's nest on social media is rarely the best, or even most effective, way

It might "feel" effective when all the excitement starts and strangers egg someone on with more and more bizarre remarks, but IME it's much better to engage with those actually in a position to do something

They aren't "taking emotional decisions behind the pretense of science"

They were acting in the best interests of the child they were caring for. You can't just give into family pressure when it means you're making harmful decisions on behalf of your patient.

Removal of ventilation (which you refer to as "suffocation"), would have happened in the hospital or the hospice, so not sure what point you're making here?

Thanks for that. I'd never seen anything so I will go and have a read.

I've clinically died (very briefly), been in a coma and on a ventilator and if a family member publically shared an image of me in that situation I would truly never forgive them. Its very very personal and only a handful of people in my real life know about it. The idea of my colleagues or Facebook acquaintances seeing it is appalling.

Death is certainly not always ugly, its an inevitable outcome for many many people every day throughout the world. I dont believe he suffocated and I would need proof that this was the case.

The biggest issue was the news. People reporting a very misleading view and parroting the incorrect and insulting views of a grief stricken woman. The news are accountable. They should have refuted or questioned comments that were shown in court to be untrue. Unfortunately, the average person isn't going to have read the detailed court documents so won't have a clue of just how intricately planned and choreographed his care was. They probably have no clue about coning, necrotic tissues and the definitions of brain stem death.... therefore the average person probably got completely the wrong impression of events. Sometimes things need to be bluntly, but kindly communicated. He was dead when he had his accident. Every bodily process was artificially maintained. He could never have recovered. That is the crux of the matter and I wonder whether any statements will be released in defence of the medical team that let him "suffocate" to death. Utterly despicable term to have used, and should absolutely have been challenged and refuted out of respect to the medical team.

Agree too puzzled the same happened to my son.

It was dealt with privately and because ofsted were involved it made sure changes were made as any safeguarding reports must be included in the next inspection if not necessary to raise as an emergency.

I had a load of evidence (I drip fed for effect ) to counteract every claim.

In the end they seemed so worried about what else I had up my sleeve I got a full meeting and ds got what I wanted for him. What amazed me the most was they seemed to think I wanted some really expensive to them solution. I didn't. I just wanted a like for like swap of school to one who wouldn't gaslight me or ignore his needs because they thought they knew what he should need based on his diagnosis.

I've spoken about it anonymously on Mn and had fabulous support.

I've never taken it public because it'll follow ds around which could affect his future employment because not only would details of what school and La did be published but also most likely that he attempted to hang himself due to their actions. He was 11. That sort of information doesn't need to follow him around publicly for 60/60/80 odd years.

You have misunderstood me. I have not asked for a change in the law- quite the opposite. I pointed out the consequences of making statements which are untrue and defamatory.

I did not say , and am not saying that Dance and her family had no right to make the ridiculous statements about starving Archie, organ harvesting, the wrong MRI scans etc, etc. Say them if they want- but their situation was not, and should not, be a free pass to expect the hospital and the NHS staff to have to take such nonsense on the chin and at the very least not counter the inaccuracies.

If Dance or Carter get to the point of making accusations against named individuals then the consequences for them will be same as anyone else doing that- potentially called to court to prove these accusations.

Good article in the Guardian from a palliative care doctor:

www.theguardian.com/commentisfree/2022/aug/07/archie-battersbee-doctors-withdrawal-of-treatment

My work involves the fields of medical negligence litigation and also of litigation in cases of abuse within various institutions. Also years of experience in mental health and learning disability services. And i have a SN child and have successfully taken a LA to tribunal to get his necessary educational provision. I absolutely vehemently agree about the vital importance of people and their families being able to speak up, and to receive support to challenge the authorities/professionals/institutiona/received "wisdom". Including them being supported to raise concerns in the public domain, which is essential for wider change. Cf Winterboune View and many other examples.

However, defamation, dishonesty and misplaced anger are not helpful, they are very counterproductive and harmful. What has happened in this case has harmed not helped justice and humanity. Poor Archie was never going to be able to be helped. It is hard to see that Hollie and the family have been helped. The NHS, patient care, health policy, medicine, and society as a whole has not been helped. In my opinion anyway.

Except that those of us who work in healthcare are not saying that.

In my personal practice I take time to talk through peoples options with them so that they can have the treatment that is right for them. More widely, I feel strongly that it is an important safeguard that people can challenge healthcare decisions and are supported to do so when necessary. The idea of people being able to access legal aid so they at not at the mercy of groups like CLC seems worth looking at to me.

Excellent communicated. Compassionate but completely clear in the meaning of what happened to Archie. Something that has been lacking in the news.

I'm not trying to argue here, just discussing. "in the best interest of patient" is used like a mantra, that does not make sense in the hospice case. If they believe he's dead anyway, why can't he go to the hospice? Who defines what's the best interest of the patient when talking about how or where he will actually die? Of course he suffocated, that's what withdrawing the ventilator is. His body is deprived of oxygen. Hiding behind mantras (dignified, best interests etc etc) and being pedantic about technical terms doesnt help anyone. His life support was withdrawn, and he died at the hospital against his family's wishes. That's what happened.

Excellent article by Rachel Clarke, I have read a couple of books by her. I have huge respect for her.

@Geccochebello

how many deaths have you witnessed to say that none are dignified and all are ugly?
In 40 years as a Nurse, I have probably witnessed more than a hundred, the first as a student nurse on my first placement on Christmas Eve. From cancer patients, young and old as a staff nurse at a regional cancer centre, and as a ward sister on what was then called a psycho geriatric unit. The vast majority of those patients had a calm, dignified death with relatives or a nurse with them. Some of them I still remember nearly 50 years on. The last death I witnessed was my best friend, aged 50, at home peacefully surrounded by her family and me, talking to her and stroking her. It was a good death.

somebody said upthread that we need to get rid of the taboo about death. Yes we do.

It was interesting, some concern but lots of she needs the money, he must have consented (he didn't look like he could consent to me) and people liking her.

His life support..... his life was artificially maintained. He could not "live" in anyway that could be seen as meaningful or dignified. The doctors knew that. How cruel can one be to maintain such a 'life.' That boy died when he cut the oxygen flow to his brain to the extent that the brain stem became necrotic.

It's used like a mantra because it's the very foundation of medicine?! You do what is in the best interests of your patient.

Just because Archie was brainstem dead doesn't mean it no longer applies. This is why they didn't alter the palliative care plan at the whim of the family/CLC and why they didn't allow him to move to a hospice.

He might have been brain stem dead but we still treat bodies with respect. Things like necrophilia or digging up bodies are illegal because it's considered grotesque they might not be able to feel but it's still undignified. The family wanted to be there when he died, he deserved a peaceful physical death without chaos. If they got their wish he probably would have flatlined in the hospital corridor on in the ambulance alone without his family. Do you think the family would have been happy with that outcome ?
We don't own our relatives.

The suffocation occurred when Archie put the ligature round his neck.

He also didn't suffocate as he made no respiratory effort his physical death was painless.

He might have been brain stem dead but we still treat bodies with respect.

Aye - this is why the Alder Hey scandal was a scandal, and led to changes in legislation, even though it "only" involved dead patients.

@Geccochebello

Its not a bad mantra to have is it? “The best interests of the patient” means that individual will have their interests served. Including ensuring their dignity as they die. And if applicable ensuring that the individual can have their close family with them as they pass.

If Archie had been subjected to the possibility of dying in a busy corridor (with lots of random people passing by), or a lift (no room for family), or in the back of an ambulance (no room for family), would that have
A: been dignified?
B: served his best interests?

And how would his family have felt when they couldn’t hold him as he died?