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.

I wondered this 😬

There’s a lot of people here in an unnecessary flap. I can’t find anything in the guidelines to suggest an diagnosis of autism would mean denial of critical care?
If you have a frailty score of 5 or below you’re pretty bloody frail and are unlikely to benefit from critical care. IF you can be weaned off the ventilator you will be in very poor condition and unlikely to live much longer anyway. This is not the fault of the Conservatives, as much as I personally dislike them, this is a pandemic and we could not have had thousands of expensive empty ICU beds waiting for it.
If you are physically disabled in some way that means you are unlikely to benefit from ventilator support then you won’t get it. No one is condemning you because you’re ’not contributing’.
These guidelines are to back up the decisions doctors already make every day. Where I work families will demand ventilation for patients who would not benefit from it at all and will actively fight the team for it. In a pandemic doctors may not have the time to go nicely-nicely with you to explain why 95 nana would be better off with a syringe driver and comfort cares.

Antipodean what a sensible post.

That does make me wonder whether the guidance and the virus are both deliberate attempts at eugenics tbh. Bizarre that we would even consider suddenly reversing decades of progress on disability rights

It is the fault of the conservatives - of course it is. We had many more ventilators before they were in power. And that's just one example.

Where I work families will demand ventilation for patients who would not benefit from it at all and will actively fight the team for it. In a pandemic doctors may not have the time to go nicely-nicely with you to explain why 95 nana would be better off with a syringe driver and comfort cares.

Yes, well. It's a normal human instinct to want to save those whom you love. Funnily enough

Do these guidelines, including the updates, mean a patient who has say rheumatoid arthritis or fibromyalgia would be unlikely to receive and/or benefit from ventilation if they score 5 or above on the CFS - I.e. struggle with walking, shopping, heavy housework etc? Would those living in supported accommodation for their disability automatically be considered unsuitable for ventilation?

There has to be national guidelines because it can’t be down to individual clinicians!

So what SHOULD they be, if not most likely to benefit?

but ASD/learning difficulties have no impact whatsoever on a person's immune system/lungs.

Why do you think it is acceptable to include ASD/LD into the frail category? They do not make a person less frail per se. A person with ASD is just as likely to benefit as someone without.

Are you saying a person is less worth of they have a learning disability? It seems so!

Do these guidelines, including the updates, mean a patient who has say rheumatoid arthritis or fibromyalgia would be unlikely to receive and/or benefit from ventilation if they score 5 or above on the CFS - I.e. struggle with walking, shopping, heavy housework etc? Would those living in supported accommodation for their disability automatically be considered unsuitable for ventilation?

No! It was never about that. The NICE guidelines advised using the clinical frailty scale, as physicians already do when patients who are frail have a life threatening respiratory issue.

Some people then looked at the frailty scale and decided some of the points could be applied to healthy people with LDs.

Frailty refers specifically to elderly people in poor health. It is not about healthy younger people, all of whom would not progress past the first couple of stages of the frailty scale - because they are not frail.

I have ME and fibro - I am not frail.

Well, when ordinary people - including MNers - are prepared to write off all the elderly and all those with health conditions, rather than stay in lockdown, the original guideline is not surprising

This.

The NICE guidelines advised using the clinical frailty scale, as physicians already do when patients who are frail have a life threatening respiratory issue.

But their new guidelines say anyone admitted with CV. And what do they class as stable? I have family with RA on immunosuppressants and other health conditions but none are respiratory. I think the key here is what they class as stable?

And @SinkGirl I'm not referring to LD. RA or fibromyalgia isn't a LD it's a physical health conditions which has a severe impact on a person's independence (yes I know it varies patient to patient but I'm specifically worried about those I know).

And, sorry me again but the people I know would go past the first few points as they do need help with things such as stairs, shopping, heavy housework etc. So by their definitions would be frail?

Horrible. As if a new eugenics is emerging almost overnight.

This is what they meant by a herd Immunity strategy. The old and the weak are culled-off for the good of the herd.

The new guidelines say that the CFS should not be used to assess those under 65 (which doctors already knew, since this scale has been in use for years) and that those with stable longterm disabilities should have an individual assessment of frailty.

This is because, while some of the higher stages on the CFS talk about living independently, independently carrying out tasks, it’s talking about those things in the context of being too frail to do them. Not being unable to do them for other reasons.

When they talk about stable, they are talking about health and whether they would survive measures such as ventilation.

@Selfisolationquery they wouldn’t though. Because the scale is specifically about frailty, which isn’t just a euphemism for unwell.

Frailty is by definition “Frailty is a distinctive health state related to the ageing process in which multiple body systems gradually lose their in-built reserves. Around 10 per cent of people aged over 65 years have frailty, rising to between a quarter and a half of those aged over 85.”

It’s not about whether you can do things for yourself - it’s a progressive medical state related not to illness but to ageing specifically.

And the reason those who are too medically frail would be denied treatment is not because they are not worth treating but because the higher you are on that scale, the less chance you have of surviving treatment.

I'm a doctor in intensive care. I really do not think that we would reject a referral based on autism/LDs if the person was otherwise physically well and active. It is purely about whether you will physically be able to survive and come off a ventilator. If you are not able to physically mobilise and do your own shopping etc then the fact is that you are unlikely to have the physiological reserve needed. That's all the decision comes down to.

@OverTheHandlebars do you think somebody with rheumatoid arthritis on immunosuppressants who needs help getting up the stairs, cooking, sometimes getting dressed etc would physically be able to survive and come off a ventilator if it came down to it?

Under normal circumstances I think we would give them a go and perhaps they could have a slow wean off. But with covid 19 people seem to be struggling so much more than usual and I think it's unlikely they'd cope.

In my unit currently we normally have around 20 beds and wouldn't be ventilating more than a dozen people. When I left work last night we had 35 on ventilators. None of those patients really have much more wrong with them normally than high blood pressure. Things really are bad.

This is all very sobering.

I cant believe people are trying to justify this. I understand that there arent enough ventilators, i understand you give the ventilators to the people most likeley to survive the process and you follow clinical guidelines. But this is beyond that it was deciding that if two equally healthy candidates are vying for ventilator something like autism can be used as a deciding factor even though that autism has no bearing on the likey success of ventilation. It would be fairer to flip a coin.

Saddest if all is the fact that once u hand over your disabled person to the drs for CV treatment, u would no longer offer them any comfort

@OverTheHandlebars, thank u for having time to come on here and for all your RL work

@OverTheHandlebars

Thank you for being honest. It is a sad reality that many people just don't realise how aggressive and debilitating full ventilation is. The same with CPR. We are a society which is used to being cured of all ills, and we have of course come a long way, even over the last 10 years or so, but there are some things that just can't be overcome, and I think we all need to be more aware, and realistic of poor outcomes.

I cant believe people are trying to justify this. I understand that there arent enough ventilators, i understand you give the ventilators to the people most likeley to survive the process and you follow clinical guidelines. But this is beyond that it was deciding that if two equally healthy candidates are vying for ventilator something like autism can be used as a deciding factor even though that autism has no bearing on the likey success of ventilation. It would be fairer to flip a coin.

No one is trying to justify that being the case. Where in the guidance does it say that a NT person would be chosen to have treatment over a ND person? If it says that anywhere then I have missed it.