Page 12 | 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. 🥺

nolongersurprised · 07/08/2022 20:51

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Quia · 07/08/2022 20:59

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I wouldn't put an act of dignity before my sons life, sorry..if I believed he was living and his life support was being withdrawn I don't know, I wouldn't go without a fight.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.

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I suspect the reality is that you wouldn't, like the vast majority of parents in this situation. To get to this point in a case like this, you would have to disbelieve not only what the doctors treating your child say, but doctors brought in from several other hospitals for a second opinion. You would have to build up a belief that those doctors and nurses, for no obvious reason, have decided that they want to kill your child, despite working on him 24 hours a day using cutting-edge medicine to support all his bodily systems and spending a fortune keeping him in PICU. You would have to consider the fact that you haven't been able to find one remotely credible medical expert to support you, despite the best efforts of very motivated and knowledgeable lawyers, and still decide that you are right and others wrong. You would have to look at easily googleable facts, e.g. that someone with brain function would not be able to tolerate a breathing tube without heavy-duty sedation, yet still think there is no problem with the fact that your child never reacts to it at all.

Accusing people who say they would accept medical advice of not being parents is particularly hurtful in the context of the fact that many people who have contributed to these threads are parents who have been through this scenario and decided to put their child's welfare above their own wishes.

nolongersurprised · 07/08/2022 21:00

With transfers there’s also the issue of protecting your staff. I’m not saying this necessarily factored into decision making but it was very clear that the family thought he was being murdered.

Had there been a death in transfer a doctor and a nurse may have have been put in a vulnerable position, not necessarily mediolegally but emotionally.

Trust does go both ways.

Quia · 07/08/2022 21:05

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.

No-one denies that. Absolutely no-one on this thread is saying that whistleblowing should be anything other than encouraged. I don't understand why such heavy weather is being made out of the concept that blatantly untrue and defamatory statements should not be left unchallenged.

Quia · 07/08/2022 21:22

AlexandriasWindmill · 07/08/2022 20:47

This thread will be deleted and it should. It's distasteful the way certain posters who are claiming to be concerned about the dignity of patients are posting comments that are callous in the extreme.

There is a multitude of evidence of substandard care, unethical palliative care practises and of the NHS ignoring government guidance about critical and terminal patient care. The recent Tavistock case is just one example of the NHS making irreversibly wrong decisions about DC's care. Trying to sweep that scandal, the DNR scandal and the many others under the carpet and trying to make such discussions subject to legal restraints and anonymity does not benefit patients. It doesn't benefit whistleblowers and it doesn't benefit medical staff.

It does benefit those who want to make it easier to erode DCs' rights; those who want to push an euthanasia agenda and those whose 'quality of life' arguments veer into eugenics.

FFS. Can you point us to the manifold posts in this thread that you claim say that scandals and negligent treatment should be swept under the carpet? And indeed can you explain why the thread should be deleted purely because you perceive (incorrectly) that opinions on this that differ from yours are being posted?

nolongersurprised · 07/08/2022 21:23

Quia · 07/08/2022 20:59

I suspect the reality is that you wouldn't, like the vast majority of parents in this situation. To get to this point in a case like this, you would have to disbelieve not only what the doctors treating your child say, but doctors brought in from several other hospitals for a second opinion. You would have to build up a belief that those doctors and nurses, for no obvious reason, have decided that they want to kill your child, despite working on him 24 hours a day using cutting-edge medicine to support all his bodily systems and spending a fortune keeping him in PICU. You would have to consider the fact that you haven't been able to find one remotely credible medical expert to support you, despite the best efforts of very motivated and knowledgeable lawyers, and still decide that you are right and others wrong. You would have to look at easily googleable facts, e.g. that someone with brain function would not be able to tolerate a breathing tube without heavy-duty sedation, yet still think there is no problem with the fact that your child never reacts to it at all.

Accusing people who say they would accept medical advice of not being parents is particularly hurtful in the context of the fact that many people who have contributed to these threads are parents who have been through this scenario and decided to put their child's welfare above their own wishes.

Show quote history

Good post

Tougherpolicies · 07/08/2022 21:32

I suspect the reality is that you wouldn't, like the vast majority of parents in this situation. To get to this point in a case like this, you would have to disbelieve not only what the doctors treating your child say, but doctors brought in from several other hospitals for a second opinion. You would have to build up a belief that those doctors and nurses, for no obvious reason, have decided that they want to kill your child, despite working on him 24 hours a day using cutting-edge medicine to support all his bodily systems and spending a fortune keeping him in PICU. You would have to consider the fact that you haven't been able to find one remotely credible medical expert to support you, despite the best efforts of very motivated and knowledgeable lawyers, and still decide that you are right and others wrong. You would have to look at easily googleable facts, e.g. that someone with brain function would not be able to tolerate a breathing tube without heavy-duty sedation, yet still think there is no problem with the fact that your child never reacts to it at all.

Accusing people who say they would accept medical advice of not being parents is particularly hurtful in the context of the fact that many people who have contributed to these threads are parents who have been through this scenario and decided to put their child's welfare above their own wishes.

Brilliant post

Nat6999 · 07/08/2022 21:40

My friend died in 1974 after receiving head injuries in a car crash, her life support was turned off 48 hours later. She was 5 years old, I often wonder if that crash had happened today if she would have survived or even had a chance. Her parents & sister walked away with nothing worse than a broken ankle, cuts & bruises.

BreadInCaptivity · 07/08/2022 22:19

Tougherpolicies · 07/08/2022 21:32

I suspect the reality is that you wouldn't, like the vast majority of parents in this situation. To get to this point in a case like this, you would have to disbelieve not only what the doctors treating your child say, but doctors brought in from several other hospitals for a second opinion. You would have to build up a belief that those doctors and nurses, for no obvious reason, have decided that they want to kill your child, despite working on him 24 hours a day using cutting-edge medicine to support all his bodily systems and spending a fortune keeping him in PICU. You would have to consider the fact that you haven't been able to find one remotely credible medical expert to support you, despite the best efforts of very motivated and knowledgeable lawyers, and still decide that you are right and others wrong. You would have to look at easily googleable facts, e.g. that someone with brain function would not be able to tolerate a breathing tube without heavy-duty sedation, yet still think there is no problem with the fact that your child never reacts to it at all.

Accusing people who say they would accept medical advice of not being parents is particularly hurtful in the context of the fact that many people who have contributed to these threads are parents who have been through this scenario and decided to put their child's welfare above their own wishes.

Brilliant post

Agreed. Excellent.

TheLassWiADelicateAir · 07/08/2022 22:22

*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 *

My son is an adult but he, my husband and myself had a conversation, largely for the avoidance of any doubt, to make clear that none of us should ever to one of us what Dance and her family did.
**

Original poster

BongoJim · 07/08/2022 22:24

AlexandriasWindmill · 07/08/2022 20:47

This thread will be deleted and it should. It's distasteful the way certain posters who are claiming to be concerned about the dignity of patients are posting comments that are callous in the extreme.

There is a multitude of evidence of substandard care, unethical palliative care practises and of the NHS ignoring government guidance about critical and terminal patient care. The recent Tavistock case is just one example of the NHS making irreversibly wrong decisions about DC's care. Trying to sweep that scandal, the DNR scandal and the many others under the carpet and trying to make such discussions subject to legal restraints and anonymity does not benefit patients. It doesn't benefit whistleblowers and it doesn't benefit medical staff.

It does benefit those who want to make it easier to erode DCs' rights; those who want to push an euthanasia agenda and those whose 'quality of life' arguments veer into eugenics.

It won't be deleted and it shouldn't. It's distasteful the way certain posters try to police the site on behalf of MN and try to shut down debate.

OP posts:

AlternativelyWired · 07/08/2022 22:34

Anyone doubting the decision made by the hospital and courts should read the court documents to understand why those decisions were the right ones, however heartbreaking those decisions were.

itsgettingweird · 07/08/2022 23:34

Tougherpolicies · 07/08/2022 21:32

I suspect the reality is that you wouldn't, like the vast majority of parents in this situation. To get to this point in a case like this, you would have to disbelieve not only what the doctors treating your child say, but doctors brought in from several other hospitals for a second opinion. You would have to build up a belief that those doctors and nurses, for no obvious reason, have decided that they want to kill your child, despite working on him 24 hours a day using cutting-edge medicine to support all his bodily systems and spending a fortune keeping him in PICU. You would have to consider the fact that you haven't been able to find one remotely credible medical expert to support you, despite the best efforts of very motivated and knowledgeable lawyers, and still decide that you are right and others wrong. You would have to look at easily googleable facts, e.g. that someone with brain function would not be able to tolerate a breathing tube without heavy-duty sedation, yet still think there is no problem with the fact that your child never reacts to it at all.

Accusing people who say they would accept medical advice of not being parents is particularly hurtful in the context of the fact that many people who have contributed to these threads are parents who have been through this scenario and decided to put their child's welfare above their own wishes.

Brilliant post

Agreed.

Very succinct.

And no - no one is suggesting whistleblowing should be stopped. I've actually encouraged people to use this.

But whistleblowing about a factual situation through the correct channels is not defaming people with facts contrary to actual evidenced actions all over the media (which will go global) and then not one person challenging that.

users974367 · 08/08/2022 01:51

They've done a lengthy Q&A live.

I'm sad that she isn't allowing herself to rest.

Quia · 08/08/2022 07:49

If she keeps courting the media she is liable to regret it. These things really have a way of backfiring.

I suspect she may also regret any inquiry, if it happens, because any inquiry will need to be wide-ranging and would probably put to bed once and for all the rumours floating around about swapped scans etc - to say nothing of looking into the role of the media including the family's use of social media, and the role of CLC.

MissyB1 · 08/08/2022 08:03

users974367 · 08/08/2022 01:51

They've done a lengthy Q&A live.

I'm sad that she isn't allowing herself to rest.

Where is the Q&A session is it possible to view?
She needs to be careful, the media may appear to be on her side at the moment, but they could easily turn.

Quia · 08/08/2022 08:08

AA types still trying to shut down the facts. I had a brief exchange on an FB post about the decision to refuse a hospice transfer, only to find myself being told to back off because Ms Dance is a grieving mother. As she wasn't on the thread and is never likely to be, and I was merely referring to a factual error, I struggled to see the relevance.

itsgettingweird · 08/08/2022 08:30

It's terrible that the "be kind" movement is still being used to close down debate.

No one seems to think it extends both ways to both Katie's in situations of conflict so it isn't actually what people believe - it's just a mantra.

itsgettingweird · 08/08/2022 08:31

Parties. Not sure why my iPad thinks Katie is involved

BoreOfWhabylon · 08/08/2022 08:42

Another thread was taken down overnight due to speculation about the family.

I'm sure if there is anything to come out it will come out in the fullness of time.

HappyHamsters · 08/08/2022 10:07

Quia · 08/08/2022 07:49

If she keeps courting the media she is liable to regret it. These things really have a way of backfiring.

I suspect she may also regret any inquiry, if it happens, because any inquiry will need to be wide-ranging and would probably put to bed once and for all the rumours floating around about swapped scans etc - to say nothing of looking into the role of the media including the family's use of social media, and the role of CLC.

I agree with you here, the media are not everyone's best feiend and an inquiry could throw up some difficult discussions for them.

bloodybluemoon · 08/08/2022 10:54

Our media just loves putting people on a pedestal and then bring you back down dragging you through the mud.

itsgettingweird · 08/08/2022 11:28

I think media are being very irresponsible here.

For them grieving families are click bate.

But you need to treat individual cases with merit and they have (imo) a responsibility not to exploit people.

Other cases where families have unearthed substandard care it's very very thorough and there's been evidence and the situation is highlighting failures.

Generally in the 3 most public cases we've had in the past 5 years it's been grieving families in the throws of emotion.

Even the AK king we had a family who had researched and were just in disagreement about what type of treatment was best. They weren't being denied treatment for their child or withdrawal of care.

Families shouldn't be denied a voice - but they shouldn't be exploited either.

Quia · 08/08/2022 15:33

I think that's the problem. Families in situations like this become little more than commodities to the media, and the value of the commodity changes as the situation changes - plus the media is always looking for another angle. Unfortunately it happens too often that the "other angle" becomes a hostile one. So far the media has been quite restrained for obvious reasons, but unless they are very lucky that won't last, especially as this family doesn't really fit the stereotype that papers like the Mail approves of.

LetsGoFlyAKiteee · 08/08/2022 18:18

users974367 · 08/08/2022 01:51

They've done a lengthy Q&A live.

I'm sad that she isn't allowing herself to rest.

I've read that they said during that they hope Sky News will film the funeral so people can see..I really hope that isn't true. Know people grieve in different ways but there is already so much backlash happening due to the interviews and that etc...