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'm pleased to see that the Guardian article is among, if not the, Most Shared. www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties

My 18 year old DS with ASD and a mild LD (no other underlying conditions) had his first Covid jab last month. I was pleased that they are definitely prioritising young people with these conditions in my area. I was shocked he was called up so early and wasn’t quite ready myself to decide if he should have it (new jab/long term side effects not fully apparent). Obviously I made the right decision!

He was the only youngster in the clinic and stood out like a sore thumb. It seems to vary a lot by area as to how quickly they are getting through the priority groups.

www.theguardian.com/world/2021/feb/16/jo-whiley-offered-covid-vaccine-before-sister-in-care-home-with-diabetes

[quote wonderstuff]www.theguardian.com/world/2021/feb/16/jo-whiley-offered-covid-vaccine-before-sister-in-care-home-with-diabetes[/quote]
"Jo Whiley has said she is “living through a nightmare” after being offered the coronavirus vaccine before her sister, who has learning difficulties and diabetes and whose care home has been locked down due to an outbreak."

Cripes.

...and very sadly, Jo Whiley's sister, Francis, has now tested positive.

It is an absolute crime that Care home with adults with LDs weren't in the highest priority.

Oh gosh @HazeyJaneII that is tragic.

Extremely worrying for me as a parent of a child with autism and cerebral palsy who won't be offered the jab whatsoever as shes only fifteen

My son is early 20’s and has severe autism and SLD. He had the vaccine a couple of weeks ago. A few of his friends have had theirs Too. There’s no way I’d sign a DNR for him.

It's so worrying isn't it @pinkmarsh ? My son is only ten but he also has severe autism and severe learning disabilities ,other than that he's a healthy child and there is no reason why he wouldn't live a long happy life .

sabrina
DS2 is under is the same age and has been recommended off license by his paediatrician.

Ian Rankin hits out at lack of Covid jab advice for people with learning disabilities
Crime writer accuses governments in UK of ignoring people like his 26-year-old son, who is in a care home. www.theguardian.com/world/2021/feb/17/ian-rankin-hits-out-lack-covid-jab-advice-people-learning-disabilities

I don't know if anyone follows Jo Whiley on Twitter, but her sister is now very ill in hospital.
It is so so sad, and appalling that the lack of vaccinations, for such a vulnerable group, isn't more of a scandal.
I

That is so sad. Hope she recovers quickly.

I really think it's not just the government but a huge chunk of the population who sees those with cognitive impairments as less worthy human being.

There is no other way to explain silence and lack of outcry. It's just not something people are bothered about.

I don't know if anyone follows Jo Whiley on Twitter, but her sister is now very ill in hospital

Didn't realise she was in hospital last I'd seen she had just tested positive. I hope she'll be ok, I really felt for Jo having received her vaccine booking appointment and yet her vulnerable sister in a care home hadn't received hers yet.

How are they terming learning difficulty, to what severity.
I have learning difficulties and low IQ due to consanguinity.
Plus dyslexia and dyspraxia.
Tbh, I can't keep distance so I don't go out.
DH does the shopping and I walk at quiet times, but anywhere busy, I'm useless.
I'm sure people like me would be ok, as nothing is on my record, apart from educational psych report.

How do we know what's applicable and what level, does anyone have a link, or is it just a blanket learning difficulty?

Bloody shocking that people have to cope with this, in this day and age.

There are two diagnosis one for learning difficulties and one for learning disabilities the latter is the one which deals with IQ among other things. It’s severe learning disabilities that have been included.

How are they terming learning difficulty, to what severity.

not sure really but I know (through DD) number of young adults with learning difficulties. Neither of them can live independently, they are all either in care settings or have round the clock supervision at home. The ones I know cannot read and write (bar very basic stuff) or cross a road safely, they have no independent living skills. But they all have social care etc involved. Not sure if that is a flag of some sort?

Learning difficulties versus learning disabilities (uk)

“learning disability constitutes a condition which affects learning and intelligence across all areas of life. a learning difficulty constitutes a condition which creates an obstacle to a specific form of learning, but does not affect the overall IQ of an individual.”

I think it is appalling that Jo Whiley's sister Frances hasn't already been vaccinated. How someone with a severe learning disability, diabetes and who is unlikely to tolerate a mask for hospital treatment wasn't put in a higher risk category, is beyond me.

I agree sockwomble. It's negligent.

It is so awful, and seeing Jo Whiley's tweet desperately pleading for ideas of how to administer to oxygen to someone who won't tolerate a mask, is awful. It reminds me of the many times we have battled with ds in hospital - he is only young, and it was terrible to try and get oxygen into him, cannulate him, get medicine into him....it really makes me fear for the future.
I know we have the Treat Me Well Campaign, and things are very slowly improving, but so much more needs to be done.

“I don’t blame the general public for not realising this is going on. When they hear on the media that care homes have been vaccinated they go ‘oh good, the vulnerable are no longer vulnerable’. And those of us with young adults with special needs and disabilities are going ‘it just isn’t like that’. It does seem an anomaly that where Kit lives was classified as a care home when it came to lockdown procedures but wasn’t when it came to vaccinations.” www.theguardian.com/books/2021/feb/19/ian-rankin-covid-why-does-it-take-celebrity-voices-for-the-disabled-to-be-heard

I'm glad they're following up on this.

I only heard that this was still in place a few days ago.... I naively assumed that it had stopped near the end of the first lockdown.

I'm so scared for my oldest. Thank you to the poster who mentioned that an informal carer would be allowed to be with her as my oldest is not able to communicate as we would and has a lot of difficulties. So at least I could be there
My worst nightmare is my oldest ending up in hospital all by herself unable to communicate properly.

I have experienced some really bad medical care myself - also some good care - but mainly bad and when my oldest was in hospital previously was basically forgotten about in side room. Was given a DVD player and left. Expected to ask for pain and anti sickness meds even though they were obviously written up with the times but she wasn't receiving them despite me telling them about communication difficulties and it all being on medical records.

I have zero faith that the hospital would have the understanding to help and this scares me so much.

@horseymum

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.

Whilst in my experience people with learning disabilities DO get excellent healthcare, so therefore I disagree about this part of your post, I whole heartedly agree with the rest of your post. I think any healthcare professional would be mightily offended if they were thought to be less professional with a person with learning disabilities. People with disabilities, particularly learning disabilities, are the hidden crisis in our society. They are marginalised, don’t have a voice, get talked over and basically seen as second class citizens. I think there needs to be a full investigation into the way people with disabilities have been treated throughout this whole Covid pandemic. I believe there’s some scaremongering going on in the article quoted, lets see some solid evidence.

I cannot get over the shock that people are expressing. People in medical circles believe they are superior and they can make judgements over who gets effort and who can wait. Simple. So the blame lies squarely with the medical establishment.