Learning disabilities, death rates and DNRs (again)

[SinkGirl]

How in the fuck is this happening again?

And 18-34 year olds with learning disabilities 30x more likely to die from COVID than those without. Given this, surely those with learning disabilities should be prioritised for the vaccine.

I’m so angry about this.

www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties?CMP=share_btn_fb&fbclid=IwAR36u96_3oThaRJ4IacTKGS-HaEq7ooypuwDzqsqVz1Jl_UsN1fHbRoczLI

I think the reason they are dying is because they don't get the same care as others do.

That's shocking. I think that it is because they can't advocate for themselves, and the person who would do this can't visit them in hospital and do it for them.

It is well documented that having even moderate learning disabilities puts you at risk of an earlier death. You don't receive as good health care, you may have lost your greatest advocates ( your parents) when you are older, you don't get treated seriously. Our society puts greater emphasis on shouting about LGBT rights than those of disabled people sadly. Everyone wants to be a trans ally on social media but not an ally to disabled people.

My clients with learning disabilities are being vaccinated this month. They almost all have comorbidities - chronic physical health issues or serious mental health diagnoses or both, which is why they are at high risk. Downs syndrome for example is is a physical condition as well as bringing varying levels of learning difficulties with it, and the multiple physical issues our residents with Downs have put them at risk. All our residents with Downs can and do wear FFP2 masks outside the house but find remembering physical distancing harder.

Prejudice and lack of understanding of disability is shocking. She was in her 70s with dementia but MiL died in hospital, they said she wouldn't eat and pulled out feeding tube so there was nothing they could do. A family friend working in another part of the hospital managed to go and see her, she didn't have her hearing aid or glasses, she was deaf (had been since childhood) and relied on lip reading, so had been left completely unable to communicate. She could sign but I can't imagine many staff in hospital can. Family kicked up a fuss, glasses and aid were found, she died, she may have anyway but it must have been so frightening for her and criminal to just disregard the fact that they'd left her unable to understand.

It's often not just an underlying condition, it's a combination of that and a lack of care, understanding and attitude towards people with disabilities that they aren't quite as valued, they're a burden, extra work.

Well before this pandemic a woman with autism filmed her treatment in hospital and it was just horrific, the staff were so angry with her because she was being loud, because she was scared, a security guard with experience of autism stepped in and calmed her and advocated for her. The medical staff just didn't know/care. All she needed was to be listened to.

Even mild disability like ADHD has shocking consequences for reduced life expectancy. A lot of it is down to reduced income, poorer diet, increased risk of drug addiction, risky behaviour. If it's treated and managed the risks reduce completely, but can you get diagnosed and treated by the nhs as an adult? Not in my experience.

Why are people with learning disabilities more prone to dying? My son has a learning disability but has no health problems that I know of.
My nephew has a learning difficulties and he was born with a hole in his heart he's 36 now but doesn't see drs or anybody about his health.
I know some genetic conditions come with health problem but not all.
Sal

If it was any other minority group that was dying at 30 times the rate of any other there would be an outcry and rioting in the streets

A combination of factors, poverty, lack of care, less listened to, less able to explain symptoms, more likely to receive poor treatment. All groups subject to prejudice have poorer health outcomes.

Sadless for people without comorbidities it will sadly be a mix of higher risk of living in poverty and not being listened to heard/ listened to in healthcare situations, as other posters have said. Those with someone to advocate for them, whether parents or carers, have better odds, but if actually admitted to hospital with Covid an advocate won't be allowed. That's the unfair reality.

Awful

This mother has done incredible work campaigning for autism training for HCPs following the death of her son which was ruled preventable.

www.bbc.com/news/uk-england-bristol-50301184

We have had some pretty awful experiences in hospital with staff who just don’t get it. Last year DT2 had to go into hospital for a procedure and the staff were absolutely incredible - bent over backwards to support him, gave him a sedative when he was finding basic obs so distressing, gave us a separate room, took him to theatre first and we were home before lunch. I was so grateful i was in tears because this is so unusual. Had he been an adult without me to explain why he was so scared I imagine things wouldn’t have gone so well.

My 18 year old ds has mild ld, autism and adhd with no physical health comorbidities. However if he had to go to hospital without me, or worse be admitted to an adult ward, he would be so distressed that I imagine he'd be totally unable to communicate and perhaps need restraining or sedating. He doesn't leave the house without me! Without me there to calm him and advocate for him, I can't see how his outcome would be good at all.
It's one of my biggest fears.

Why are people with learning disabilities more prone to dying?

they just don't get the same quality in terms of healthcare. Without LDs, you might be also less aware or certain symptoms or cannot explain symptoms meaning delayed diagnosis. Not everyone has strong advocates and then there is the health system which has shown times and times, investigation after investigation to treat those with LDs less well than those without. You just don't get the same access to care.

I have had in the past all sort of things blamed on DC's autism/learning difficulties when it had nothing to do with it. It just seems to be used time and time again as an excuse to deny treatment.

and these learning difficulties are used as a excuse now again. it's eugenics by a different name.

We take to the streets in the name of BLM. JK Rowling got a roasting for her allegedly transphobic comments. We are up in outrage when it comes to so many minority groups but when it comes to those with learning difficulties - there is nothing. Says a lot.

It's not just about medical care it's also that they are much more likely to live in poverty, struggle with cooking, not notice or be able to express early signs of illness without an advocate, not be given health promotion advice they can understand or follow etc and then yes maybe dismissed by medical professionals or issues overlooked if they arent able to advocate for themselves. It's a very complex systemic issue and by ignoring what we now know about the death rate within people with LD they are just being let down in a disgusting way again.

Why are people with learning disabilities more prone to dying?

I imagine as someone hinted to upthread, it’s because they often have associated health conditions just make then more vulnerable and problems with communication mean their symptoms go unnoticed for longer. That’s certainly true of other health conditions. I think concerns from carers etc are more readily dismissed aswell until things get serious.

Whether those issues, in particular the other health difficulties accounts for the huge disparity reported I don’t know - it certainly seems a stretch.

I really don’t like to see “learning difficulties” grouped together like that. There’s a huge difference in the health and care needs of somebody with certain underlying conditions coupled with learning disabilities than just say, someone who is dyslexic. I don’t think it helps advocate for them.

I place them together because they are both disabilities, I as someone with adhd, have an increased risk of death if my condition isn't managed (which it often isn't). I've been reading some disability studies writing recently and its really opened my eyes. Of course my difficulties are very different to those experienced by someone with an intellectual disability, but I feel if we put everyone in separate groups we miss the wider discrimination against disability and ableism that needs to be called out.

Individuals need different amounts of support and services, but broadly attitudes towards disability and discrimination needs to be addressed. I personally believe all lives are of value equally, but what's become really apparent during the pandemic is how many people believe disabled lives are less valuable.

You only have to read some of the threads on here to know ,many posters have little understanding about learning disabilities they can't see past the disability and think that people with learning disabilities and their families must have a dreadful life ,my son has severe autism and learning disabilities of course life isn't a walk in the park and it can be very difficult sometimes ,but he's also a very loved ,very funny and he brings us joy every day ,it's absolutely horrifying to think he wouldn't get the same care due to his disabilities.

@wonderstuff

I place them together because they are both disabilities, I as someone with adhd, have an increased risk of death if my condition isn't managed (which it often isn't). I've been reading some disability studies writing recently and its really opened my eyes. Of course my difficulties are very different to those experienced by someone with an intellectual disability, but I feel if we put everyone in separate groups we miss the wider discrimination against disability and ableism that needs to be called out.

Individuals need different amounts of support and services, but broadly attitudes towards disability and discrimination needs to be addressed. I personally believe all lives are of value equally, but what's become really apparent during the pandemic is how many people believe disabled lives are less valuable.

I don’t disagree with this at all, but I meant more specifically in terms of Covid and the impact on people. Co-morbidities might explain disparity for one group but not another.

@DinoHat

Why are people with learning disabilities more prone to dying?

I imagine as someone hinted to upthread, it’s because they often have associated health conditions just make then more vulnerable and problems with communication mean their symptoms go unnoticed for longer. That’s certainly true of other health conditions. I think concerns from carers etc are more readily dismissed aswell until things get serious.

Whether those issues, in particular the other health difficulties accounts for the huge disparity reported I don’t know - it certainly seems a stretch.

I really don’t like to see “learning difficulties” grouped together like that. There’s a huge difference in the health and care needs of somebody with certain underlying conditions coupled with learning disabilities than just say, someone who is dyslexic. I don’t think it helps advocate for them.

Dyslexia is not a learning disability. Learning disability is reduced intellectual ability and difficulty coping with everyday activities. They are often caused by serious comorbidity (eg hydrocephalus, epilepsy) and by genetic conditions (Down’s syndrome). People getting confused with specific learning difficulties like dyslexia and adhd I think muddies the water significantly. Lots of people with autism don’t have LD but some do. People with LD are very vulnerable and often have serious co-morbidity. I think LD are in group 6 (unless a medical condition/ age places them higher), but yes probably should have been higher because many have problems with understanding social distancing etc. All should be allowed an advocate if admitted in my opinion. I haven’t personally seen any advance planning without agreement but if it is discovered there should be a full enquiry

@BungleandGeorge I know - it’s the article that refers to learning difficulties. It’s in the heading. I am a parent to a child with learning disabilities and a serious genetic condition, so I come at this from a personal angle.

I have three adult children, Two of them are non-verbal, and autistic.
The council took them when they were in their teens because I "represented a risk of significant harm" to them because I "might at some future time show a lack of deference to social services" Seven weeks after the Order was made the council was put into Special Measures, in part for "removing children as a first rather than a last resort"-at levels unseen in any other city.

(For the 14 years after the Order, up to Covid, one or other of them was in my care for each day, 365 per year, including two overnights a week.)

Yes, I'm fearful about what might happen in the future; too many people are too keen on euthanasia for the disabled. We've got to do something.

There' was a tragic case of a young man in n Manchester being found dead in a shop doorway this week ,he had learning disabilities ,I find it particularly upsetting because as a child he attended the same special school that my son currently attends children that attend this school have to have a diagnosis of moderate to severe learning disabilities and other complex disabilities ,I can't understanding why there was no support for him after he left school.

[quote DinoHat]@BungleandGeorge I know - it’s the article that refers to learning difficulties. It’s in the heading. I am a parent to a child with learning disabilities and a serious genetic condition, so I come at this from a personal angle.[/quote]
Not aimed at you, I think many people do get confused though (and some in the thread have mentioned SLD). Obviously the naming has changed multiple times over the years and I’m not sure we still have it quite right as a lot of people don’t realise that we’re talking about people who are really vulnerable, medically and socially.
what I wanted to know was the risk of covid minus the background risk of having a LD but the article didn’t tell me that. I don’t think it’s difficult to see many risk factors though at very stage from exposure to medical risk to risk being cared for in hospital

As a mum to a ds with autism and learning difficulties i find it disgusting, but after the fight and struggles I’ve had on my ds behalf, I’m sadly not surprised.

This makes me so incredibly angry and sad. My darling boy is 6, he has LD, Communication disorder, ASC and is 5 years in remission from cancer (this makes him more prone to heart problems in the future due to intense chemo). We have many doctor/hospital appointments and he most often kicks off, lashing out at me and NHS staff. This means he misses out on necessary appointments. Fir example it took 12 months and 4 appointments to get his much needed glasses (which he won’t now wear), he needs a bowel scan and it’s just not possible. It terrifies me how he will be able to access medical and dental care as he gets bigger and stronger and also what will happen if he outlives me and DH.