Disabled people were to be denied ventilators

[Moomin8]

www.dailypost.co.uk/news/north-wales-news/coronavirus-guidelines-u-turn-after-17992694

I have an autistic daughter in a care home and this made my blood run cold.

My toddler has developmental delay and is on the pathway for an autism diagnosis. There is no doubt he has it, my DH has aspergers and DSS has an autism dx. He is non verbal, severely delayed, has alot of sensory problems and has no understanding of communication.

I am so thankful that the waiting list for diagnosis is 2 years where we are. He has been on the list for 6 months.

"on paper" he has no diagnosis at the minute and after reading that article I am so thankful for that.

Well I and two of my daughters have a diagnosis 'on paper' so I guess that's us screwed (!)

It's so important to have a diagnosis when it fits, for so many reasons.

But you never think that one day it may be held against you.

Autistic people can be really good employees. I myself work extremely hard, stick to the rules and I have a brilliant memory. I've won awards in various places that I worked. There are some things about being autistic that are actually beneficial. Don't get me wrong there is a lot that isn't. But certainly it's not a clear cut thing in relation to how 'useful' someone is.

@user1353245678533567 Maybe you should refresh you negligible knowledge of emergency care?

As medical professionals we have a duty of care to treat what is in front of us if the person is of sound mind. Someone in severe pain and haemorrhaging severely and suffering the affects of blood loss, is not legally considered to make rational decisions about their care, unless an order is in place beforehand. Whether she refused to sign for colonoscopy I don't know, but they would certainly have tried to persuade her, and probably did. The alternative would have been to pump her full of morphine and allow her to die. That's probably manslaughter in those particular circumstances.

If a Jehovah's witness mother is having a major haemorrhage following childbirth and her life is at stake and she is unconscious, then she is treated as normal. If she is not conscious she is presumed to consent. A court will take it out of the hands of parents refusing a blood transfusion for a sick child. Duty of care decisions are not black and white.

My own mother recently had some health issues and decided she didn't want treatment and wanted to die. I stayed with her a week and just kept her comfortable. After a week or being waited in she decided she wanted to live after all, so I called her gp who prescribed antibiotics for her chest infection, and today she is fit as a flea.

There isn't an inadequate supply of ICU beds, there are for enough beds for normal circumstances, it's unusual for there not to be an available bed, but one can always be found as there is a good network to locate a bed. It's not the ventilators that are the issue but the staff to man them. ICU beds are eye wateringly expensive to maintain, which is why the numbers are equal to the numbers needing them in normal circumstances. My friend works on ICU and is pissed off at being sent to work on wards as there are not enough critical care patients. Not at the moment of course, there are 2 to a bedspace now.

Not all patients need ventilators anyway and the majority can be managed using non invasive oxygen machines (NIPPY) far more easily and without highly trained staff.

A global pandemic isn't normal circumstances and the nightingale hospital in London is an example of how the beds, equipment and ventilators can be put in place in an emergency.

The NHS is underfunded for sure, and I would happily pay more tax.

People with a learning or physical disability will not be denied treatment as things stand.

This is terrifying..
I'm autistic, have adhd, fibromyalgia, asthma, etc
But I'm also very active, weight lift and cycle and play some team sports.
It scares me to consider I might not be deemed useful to society and therefore wont receive medical care as I am also a early career researcher and work on improving the lives and understanding of others.
Surely that's contributing more on a global scale then fred who breaks lockdown to buy tinnies every day, has a driving ban for DUI and has been on the dole for 4 years?

@Roostersmum2 The frailty score system would not be used on toddlers anyway. They’d all score badly because of the amount of support they need to stay alive! But clearly no one is going to just say no ventilation for two year-olds!

Surely that's contributing more on a global scale then fred who breaks lockdown to buy tinnies every day, has a driving ban for DUI and has been on the dole for 4 years?

I think you've highlighted what the basic problem with fascism is. People shouldn't be categorised on how useful they are.

If someone has young dependents I think they should be prioritised because no child should lose their parent and have to go into care.

@Moomin8... I have a diagnosis of ASD. I was a nurse in the NHS for the best part of three decades. Who knows what my son who has the same diagnosis will achieve in his future?

I cannot believe our Govt. was not aware of the NICE guidelines on this, before being hastily changed. How dare they propose to do a Dr Mengele-style process on who is useful and who is not. It’s appalling. My MP is a former NHS Dr. He’s a Tory. I didn’t vote him in. Shame on him. This Govt. will have some major questions to face, when this is over. Disgraceful.

@Moomin8 But if you prioritise parents of young children, you are also operating a system which discriminates against other, just as needy people. Young teenagers, single people?

The frailty score has nothing to do with people with disabilities, but to exclude people so frail they would,never be weaned off the ventilator.

There are alternatives to ventilators which would be used as a first line in fitter people, like many people with learning and milder physical disabilities are, so it's likely when things are up and running there will be medical equipment and staff to cope with the cases. All we can do is hope we are not as bad as Italy and Spain, but be prepared.

For heavens sake, stop panicking and read the bloody update from NICE. People with disabilities will not be disadvantaged!

This post is creating severe anxiety in people and I think I'll report it to MNHQ

www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care

I, for one, am certainly not panicking and I am aware of the updated guidelines. It is not new knowledge to me, it is simply that Covid-19 has brought it back in to sharp focus. I have just about always known, so for a good number of years now, that our loved one would potentially be denied treatment because someone else would be seen as more of a 'deserving priority'. This reflects how some disabled people in particular - those who cannot 'contribute to society' in the usual sense and need others to stand up for them - are seen by too many in society, including service providers and government. This is particularly the case because of recent austerity and cuts, when resources are even more scarce. I speak from personal experience, the testimony of others I know or have read about in reliable sources, and from honest discussions with senior experienced medical professionals who are involved with our loved one and/or family friends. I am acting on advice to protect our loved one because of this. I do not think anyone should panic but I do think they should act. To try to deny disabled people and their carers the opportunity to raise awareness or discuss this is patronising.

@goldpartyhat But clearly the fallout for someone with young children is bad for them because they would have to go into care. Outcomes for children in care are not good.

'The true measure of any society is how it treats its most vulnerable members', after all.

@goldpartyhat report it if you like but it isn't scaremongering to discuss the fact that disabled people are disadvantaged.

You can't shut a discussion down because you don't like it.

There was a report on radio 4 this morning that said a GP surgery in Wales was writing to patients asking them to sign DNR forms.

Haven’t RTFT but have to dispute this.

I have two autistic children - the guidelines never said that. They were talking about NICE guidelines using the existing Clinical Frailty Scale to assess whether critical care was appropriate, as those high on the scale would not survive measures such as ventilation. This scale is used to assess elderly people’s frailty, which is very different from children and adults with disabilities affecting their independence.

The issue came because some looked at points on the frailty scale where ability to manage independently were mentioned and decided this would be applied to those with LDs. This was never the case. Unbelievably MENCAP released the most scaremongering press release I’ve ever seen and the guidance was clarified.

There was a report on radio 4 this morning that said a GP surgery in Wales was writing to patients asking them to sign DNR forms.

It’s been reported that several practices have taken steps to open up thinking about DNRs for very vulnerable patients, and asking them to let them know now if DNR is their wishes.

@SinkGirl Absolutely. Mencap was totally wrong, and must have terrified so many parents. The OPs post does not qualify the original link with the updated guidelines. They were never mean to apply to physically or intellectually disabled people.

It's just scaremongering to an incredibly vulnerable population.

This would have been the same as choosing based on skin colour, gender or any other thing we actually have no choice of control over.

No, it wouldn't. It really wouldn't. Those things have no bearing whatsoever on a person's likelihood of survival after being ventilated, their age, their quality of life, their life expectancy due to existing conditions without COVID-19, mental capacity, etc, etc.

Every life is valuable, this is just down to hospitals being able to save as many people as possible should the worst happen. It’s a horrible decision to have to make and I’m very glad I’ll never be in the position to have to make it but I do agree that resources need to go to the people most likely to survive this. It’s heartbreaking and frightening for us to hear, my mother is recovering from cancer and wouldn’t be helped under these rules but emotions aside, I do see the logic behind it.

SinkGirl
Haven’t RTFT but have to dispute this.

This thread is in relation to coronavirus and if the NHS was overwhelmed would it still be equal medical care for all.
Please read the Coronavirus Act 2020 then share your interpretations cause that's was some seem to be doing.

The uproar and subsequent mencap press releases was in relation to the NICE corona guidelines which mentioned using the clinical frailty scale. Some took the stages wherein lack of ability to do certain tasks independently as suggesting ND people would be placed at that point on the scale, but that’s not accurate. It was talking about frailty specifically, not a lack of independence. This has since been clarified but that was never the meaning.

There’s plenty for disabled people and carers to fear right now with the Care Act 2014 basically repealed and changes to EHCP enforcement. But these concerns were based on misinterpretation of guidance.

(I am of course referring to the article in the OP here)

See, someone else now has said to me that the indemnity is so that newly qualified staff won't be punished for making a mistake.

I think it's certainly confusing.

Guidelines or not, there is plenty to suggest that this is what already happens anyway.