Page 9 | After the last goodbye.

BongoJim · 2022-08-06T20:04:58+00:00

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. 🥺

ancientgran · 07/08/2022 16:22

Felixsmama · 07/08/2022 16:15

I always thought it was inappropriate to show Derek like that as he seemed to lack capacity so can't consent to being on TV . I didn't think it was dignified for him.

Same with that little boy being shown in the media in a nappy, he's 12 years old and that's the last photo his friends will see of him. I think there needs to be anonymity in cases like that. Also I think we need to question why do certain sections of our society distrust HCPs so much ? His case was pretty clear cut medically speaking he had 0 percent chance of ever making any meaningful recovery because of the severity of his injuries. Why couldn't the family believe that even now?

Show quote history

The difference in people's reaction is interesting though isn't it. One family get loads of criticism about respecting dignity the other gets an award and public acclaim.

SleepingAgent · 07/08/2022 16:23

heldinadream · 07/08/2022 10:00

I have a suggestion for what seems to me to be a missing piece, a void into which groups like the CLC are able to step and exacerbate rather than help the situation.
My working assumption is that the NHS and the legal system have behaved impeccably and have excellent systems in place for the vast majority of cases like Archie’s.
Also the vast majority of families who find themselves in this desperate situation are able to come to a place of cooperation, understanding, and trust with the medical practitioners looking after their child or loved one.

What happens in cases where these relationships break down then is that there is a family who for whatever reason is unable to come to terms with what’s happening to them and for what’s often long established and deep seated reasons can’t trust the people they perceive to be ‘officials’ in the care of their family member.
I know that people in this position are offered counselling and I imagine that again, in many cases, counselling serves both parties to enable the family to cope to the best of their ability and therefore helps to mitigate the effects of the potentially most angry, uncomprehending and disruptive families.
Let me say clearly at this point that I am not judging or blaming people who behave disruptively within these situations; my view is these families in nearly 100% of cases have already been vastly failed by society and society is therefore reaping what it sows.

But what I think needs to be put in place is a specialist team of psychologists and therapists who, when a family is identified as being in danger of going down the disruptive antagonist route, are able to spring into full-time action to give the family maximum attention and maximum opportunity to have all their concerns sympathetically heard and taken seriously as emotional but not factual truth. It is because the Armies and the extreme Christian groups validate the emotions of the families that they gain such dangerous traction.
That validation of emotions (which is what good psychotherapy achieves) needs, therefore, to be taken back in-house by the NHS and the state.
In short, we need to demonstrate a higher level of care for people whose obvious disenfranchisement is given a performative outlet by the drama in which they find themselves.
They are ‘acting out’ in psychological parlance.
At the moment the system seems incapable of recognizing that there will be families that need to do this, that are pre-disposed and primed to do this.
Once we can as a society accept that these cases will arise and that we therefore need to demonstrate a high level of care in place for them in advance, we’ll no longer be on the back foot.
And at that point there’ll be no void for the Armies and the CLC to step into with their whipping up and their nefarious agendas.

Excellent post.

3amAndImStillAwake · 07/08/2022 16:23

Unequivocal proof was provided, first to the family themselves informally that the scans were indeed of the patient. When this didn't work, it was adressed in a court hearing and in an appeal.

Yet these claims are still being made by the family and the CLC.

But what would you do about that? Is it not already covered by defamation laws - I'm not sure what extra law you'd propose? Something from the court saying specifically about each claim that's been disproved "don't say this again"?

Puzzledandpissedoff · 07/08/2022 16:25

With freedom comes responsibility and the responsibility to gently challenge slanderous comments isn't forthcoming
I feel if you just give the freedom you are also exploiting people at their most vulnerable

This is accurately put and highlights the unfortunate point that some feel "freedom of speech" means picking a party and insisting that only they have the right to speak openly - hence the denial of clearly slanderous allegations and the leaping upon anyone who departs from a preferred narrative, no matter how gently

This by no means just concerns the recent case - we see it on SM all the time, and in addition to not being how principles work, it also shows why mediation would most likely be fruitless.
If it's to mean anything, the principle of freedom of speech has to apply to everyone, and while some things are rightly barred, what's left means that sometimes we have to hear things we'd rather not

Geccochebello · 07/08/2022 16:25

FairyBatman · 07/08/2022 13:00

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.

Yes this case certainly opened my mind. Contrary to 90% of what I'm reading here in MN, I'm with Archie's parents here. They had no say, not even in where their child dies. I made me also read cases like that child whoss parents wanted to bring to Spain for treatment and weren't allowed. It must be horrible to feel so powerless over the most important thing in your life.
Of course abuse against staff should have not happened (did it actually? I hear this but are there actual names, what exactly happened, was it the parents, was it the public etc?) but the parents thought they needed publicity to help their case. I can't say I would not go down that road. There are too many people on these threads talking about dignity, stiff upper lip etc. I wouldn't put an act of dignity before my sons life, sorry..if I believed he was living and his life support was being withdrawn I don't know, I wouldn't go without a fight. A lot of posters are probably being hypothetical. Or aren't empathetic enough, or aren't parents.

1blossomtree · 07/08/2022 16:26

3amAndImStillAwake · 07/08/2022 16:23

Unequivocal proof was provided, first to the family themselves informally that the scans were indeed of the patient. When this didn't work, it was adressed in a court hearing and in an appeal.

Yet these claims are still being made by the family and the CLC.

But what would you do about that? Is it not already covered by defamation laws - I'm not sure what extra law you'd propose? Something from the court saying specifically about each claim that's been disproved "don't say this again"?

I'm not proposing changes in legislation, just pointing out that@cansu's comments were untrue (claiming the family were just expressing opinions rather that making false claims against the trust)

theDudesmummy · 07/08/2022 16:28

@cansu re who says what is true, in defamation law a statement is presumed untrue unless the defendant can prove truth, if they could, this would be a complete defence. Something like nurses being "uncaring" etc is not something the trust would be likely to successfully claim as defamation. But saying they actively wanted to "murder" him to harvest organs would be far more clearcut. It is not likely the defendant/s would be able to prove on the balance of probabilities that this was true.

I am not saying the trust SHOULD be sueing for defamation, I am just saying they could.

1blossomtree · 07/08/2022 16:30

@Geccochebello

Authorities can step in when someone is not acting in the best interests of their child, this is accepted.

I'm with Archie's parents here. They had no say, not even in where their child dies.
It's frustrating, because medics explained carefully and sensitively, that it was highly unlikely he would survive the journey to a hospice. This is why they didn't allow him to be moved, because he would end up having a distressing death in am ambulance or a hospital corridor.

I wouldn't put an act of dignity before my sons life, sorry..
Again - fully covered by medics. It wasn't purely about dignity, it was about the fact that for 4 months someone with no hope of recovery was being kept artifically alive.

Sistanotcista · 07/08/2022 16:30

BongoJim · 06/08/2022 21:29

It's not being debated.

Show quote history

Eh? What’s happening on this thread, if not the sharing of opinions, discussion and debate?

HappyHamsters · 07/08/2022 16:32

The refusal to have initial brain stem death tests done has always bothered me, they were given that choice at the time but refused. It just seems so counterproductive because the test would have revealed he either had no brain activity or did have brain activity and if he did this may have possibly changed his treatment and care pathway. All the refusal did was delay a diagnosis, subject him to scans and delay suitable treatment.

cansu · 07/08/2022 16:32

Alexandriaswindmill
I completely agree.

Felixsmama · 07/08/2022 16:32

Geccochebello · 07/08/2022 16:25

Yes this case certainly opened my mind. Contrary to 90% of what I'm reading here in MN, I'm with Archie's parents here. They had no say, not even in where their child dies. I made me also read cases like that child whoss parents wanted to bring to Spain for treatment and weren't allowed. It must be horrible to feel so powerless over the most important thing in your life.
Of course abuse against staff should have not happened (did it actually? I hear this but are there actual names, what exactly happened, was it the parents, was it the public etc?) but the parents thought they needed publicity to help their case. I can't say I would not go down that road. There are too many people on these threads talking about dignity, stiff upper lip etc. I wouldn't put an act of dignity before my sons life, sorry..if I believed he was living and his life support was being withdrawn I don't know, I wouldn't go without a fight. A lot of posters are probably being hypothetical. Or aren't empathetic enough, or aren't parents.

Show quote history

It wasn't in Archie's best interests to be moved he was so fragile he would have died in the hospital corridor which isn't very dignified. The family wanted him moved because the relationship had broken down with hospital. The courts and medical team have to put the patient best interests first before the families.

1blossomtree · 07/08/2022 16:33

HappyHamsters · 07/08/2022 16:32

The refusal to have initial brain stem death tests done has always bothered me, they were given that choice at the time but refused. It just seems so counterproductive because the test would have revealed he either had no brain activity or did have brain activity and if he did this may have possibly changed his treatment and care pathway. All the refusal did was delay a diagnosis, subject him to scans and delay suitable treatment.

Sadly they were advised by the CLC not to have the test done in case it did prove brain stem death.

cansu · 07/08/2022 16:34

Cases are rare like this but 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.

itsgettingweird · 07/08/2022 16:35

OneFrenchEgg · 07/08/2022 16:21

Several posters have said , and I'm paraphrasing , suffering the loss of a child does not, and should not, give any-one a free pass to make wild, irrational, untrue and damaging allegations against NHS Staff with no fear of challenge or consequences.

So, if you're not allowed to take photos and record this stuff, how will you evidence it? Ask nicely and then accept whatever you're told?
I don't know why you're all up in arms and wanting the law changed just because of a few high profile cases. If staff don't trawl for this stuff they'll just see it on the news and it won't come as a surprise anyway.

Take photos and record stuff.

It use them in the correct form - Eg via the legal route.

Posting on Sm and using evidence in court are miles apart in terms of difference.

1blossomtree · 07/08/2022 16:35

cansu · 07/08/2022 16:34

Cases are rare like this but 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.

Yes - and surely you can see how this wouldn't be helped by families/organisations making fake claims against institutions.......?

OneFrenchEgg · 07/08/2022 16:38

*Take photos and record stuff.

It use them in the correct form - Eg via the legal route.

Posting on Sm and using evidence in court are miles apart in terms of difference.*

Right, not an option open to many people who are poorly educated, scared of authority and have no resources. Also, finding others in similar situations can be invaluable in effecting change. One case doesn't mean you should make wholesale change to the framework for everyone.

Sunlitlands · 07/08/2022 16:39

For me this is about safeguarding the best interests of the child .
The hospital wanted to make a full medical assessment including brain stem tests.which were refused by the family .
In the best interests of the child the hospital requested via the courts to undertake further investigation.RIghtly so and because of safeguarding concerns a guardian was appointed .Their role is solely to ensure that the best interests of the child are at the forefront of all decisions
Parents have to be consulted throughout this process .However when it is very clear that the parents are not acting in the best interests of the child for example refusing diagnostic testing and supporting prolonged invasive medical treatment that won't prevent organ shutdown and further deterioration .Then the best interests and dignity of the child means that some very difficult choices have to be made
The hospital and legal system were right in putting the dignity of the child first .
I am really concerned about the traumatised medical and nursing staff who constantly had to safeguard their every move whilst being subjected to false allegations ..In addition to caring for a rapidly deteriorating child who if the tests were agreed back in April would not need to be there.

OneFrenchEgg · 07/08/2022 16:41

Anyway, it's like a brick wall. The NHS and social care are clearly beyond reproach to posters here, excellent communicators who never get it wrong. And I am loving the new found defamation expertise following the Depp/Heard case.

itsgettingweird · 07/08/2022 16:43

HappyHamsters · 07/08/2022 16:32

The refusal to have initial brain stem death tests done has always bothered me, they were given that choice at the time but refused. It just seems so counterproductive because the test would have revealed he either had no brain activity or did have brain activity and if he did this may have possibly changed his treatment and care pathway. All the refusal did was delay a diagnosis, subject him to scans and delay suitable treatment.

Agree. This has bothered me. Mostly because it seems to have been lost in the narrative somewhere that this was the initial case. The initial case also was spread slowly over a 3 week period.

This happened because from the beginning there was obvious mistrust or just understandable denial.

But to accuse a hospital or wanting organs and then not allowing the tests that could prove your right about the health says so much.

I agree with the poster (held?) who said at this point there needs to be far better mediation. Perhaps the ability to give the child an independent guardian for their best interests before the court case. Maybe even a case you can apply to court for a guardian before applying for a hearing to determine facts and get an agreement?

I find it interesting in that all the recent high profile cases with regards the best interests of the child being in conflict between parents and medical institution that they always mention a few nurses that are ok.

Why is this? What are they doing or saying that changes the attitude towards them? Is it something specific? Are they lower band so don't actually have a say in care and therefore aren't seen as a threat? I don't know but it's something that if we could get the answer to we could maybe find a solution with that information?

HappyHamsters · 07/08/2022 16:43

Sunlitlands · 07/08/2022 16:39

For me this is about safeguarding the best interests of the child .
The hospital wanted to make a full medical assessment including brain stem tests.which were refused by the family .
In the best interests of the child the hospital requested via the courts to undertake further investigation.RIghtly so and because of safeguarding concerns a guardian was appointed .Their role is solely to ensure that the best interests of the child are at the forefront of all decisions
Parents have to be consulted throughout this process .However when it is very clear that the parents are not acting in the best interests of the child for example refusing diagnostic testing and supporting prolonged invasive medical treatment that won't prevent organ shutdown and further deterioration .Then the best interests and dignity of the child means that some very difficult choices have to be made
The hospital and legal system were right in putting the dignity of the child first .
I am really concerned about the traumatised medical and nursing staff who constantly had to safeguard their every move whilst being subjected to false allegations ..In addition to caring for a rapidly deteriorating child who if the tests were agreed back in April would not need to be there.

Thank you, this makes a lot of sense to me.

itsgettingweird · 07/08/2022 16:45

cansu · 07/08/2022 16:34

Cases are rare like this but 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.

Of course it is.

But speaking out and making wild untrue accusations because your emotionally vulnerable aren't the same thing.

Most families speaking out are doing so with the truth. It won't matter to them what they've said will be in the media and public eye for ever.

Someone allowed to make wild untrue accusations in the deaths if despair may regret that. But once it's out there ......

You essentially make a vulnerable person more vulnerable.

Geccochebello · 07/08/2022 16:50

It's frustrating, because medics explained carefully and sensitively, that it was highly unlikely he would survive the journey to a hospice. This is why they didn't allow him to be moved, because he would end up having a distressing death in am ambulance or a hospital corridor

But see, those doctors believed he was already dead didn't they? Is death via suffocation in the hospital bed more dignified? No death is "dignified", its always ugly, always sad. Dignified is a man made concept, its not a black and white thing. What you believe to be dignified might not be what I believe. If doctors are about science and facts, why are they also taking emotional decisions behind the pretense of science? This becomes a grey area. I know many doctors btw who freely admit not wanting to be taking these decisions as they simply don't know..it felt to me this family in the end were denied every one of their wishes. And it is them who are losing their child, the doctors giving these decisions are going back home to their lives at the end of the day.

SleepingAgent · 07/08/2022 16:52

HappyHamsters · 07/08/2022 16:32

The refusal to have initial brain stem death tests done has always bothered me, they were given that choice at the time but refused. It just seems so counterproductive because the test would have revealed he either had no brain activity or did have brain activity and if he did this may have possibly changed his treatment and care pathway. All the refusal did was delay a diagnosis, subject him to scans and delay suitable treatment.

Yes this has been lost in all the recent reports. This is such an important point and where I think everything went south with relations between the parents and the hospital.

1blossomtree · 07/08/2022 16:53

Geccochebello · 07/08/2022 16:50

It's frustrating, because medics explained carefully and sensitively, that it was highly unlikely he would survive the journey to a hospice. This is why they didn't allow him to be moved, because he would end up having a distressing death in am ambulance or a hospital corridor

But see, those doctors believed he was already dead didn't they? Is death via suffocation in the hospital bed more dignified? No death is "dignified", its always ugly, always sad. Dignified is a man made concept, its not a black and white thing. What you believe to be dignified might not be what I believe. If doctors are about science and facts, why are they also taking emotional decisions behind the pretense of science? This becomes a grey area. I know many doctors btw who freely admit not wanting to be taking these decisions as they simply don't know..it felt to me this family in the end were denied every one of their wishes. And it is them who are losing their child, the doctors giving these decisions are going back home to their lives at the end of the day.

A HCP on the last thread explained really eloquently why you can't start slipping and doing things that aren't in the best interests of a patient because of any reason, both legally and morally.

He was not suffocated, and I think that the fact you keep saying this shows you don't have the best understanding of the case to be honest.