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

x2boys you are local to me. That story was heartbreaking about the young man dying in the cold.

It was @Jemimapuddleduk ,and the lack of support for him naively I assumed that something like that couldn't happen to someone so vulnerable

Have people heard about the LeDeR programme? www.bristol.ac.uk/sps/leder/about/

The Learning Disabilities Mortality Review (LeDeR) programme is funded by NHS England. It is the first national programme of its kind in the world.

Its overall aims are:

To support improvements in the quality of health and social care service delivery for people with learning disabilities.
To help reduce premature mortality and health inequalities for people with learning disabilities.

This part is particularly shocking; ”analysis of data from the Primary Care Research Database suggested that the all-cause standardised mortality ratio for people with learning disabilities was 3.18, and that people with learning disabilities had a life expectancy 19.7 years lower than people without learning disabilities.”

It is precisely as Sinkgirl says - under capitalism, the value of a human is their potential for wealth generation via their labour. I have severe and enduring mental illnesses and during my teens I was treated like absolute shit by the medical establishment. Well as it happens, whilst I wasn't curable, I did in fact have the ability to work and now I have the right credentials and letters accompanying my name their attitude has done a 180. Of course what disabilists who are happy with the status quo seem to forget is that the capacity to generate wealth is not a permanent and guaranteed state. Any one of us could become disabled at any moment.

These are some of the medical barriers DS2 has, he has not been in the same room with his paediatrician for four years, his CAMHs worker and social worker will only be in the same room if I am present. His GP practice demanded I bring him in for a check up and told us to leave after two minutes in the waiting room and they would arrange a home visit (never happened). He needs to be sedated for his annual dentist appointment. The only medical access to him is his schools nurse. The sad thing is 90% of the time he is fine, loud but fine. It’s the damage he can do in the 10%. He is looking at a lifetime of medication just to access some life. Because he has not got the understanding to cope with the changes around him so lashes out. This is all known and there are other like him and yet still little protocols on how to deal with this.

@Boulshired

These are some of the medical barriers DS2 has, he has not been in the same room with his paediatrician for four years, his CAMHs worker and social worker will only be in the same room if I am present. His GP practice demanded I bring him in for a check up and told us to leave after two minutes in the waiting room and they would arrange a home visit (never happened). He needs to be sedated for his annual dentist appointment. The only medical access to him is his schools nurse. The sad thing is 90% of the time he is fine, loud but fine. It’s the damage he can do in the 10%. He is looking at a lifetime of medication just to access some life. Because he has not got the understanding to cope with the changes around him so lashes out. This is all known and there are other like him and yet still little protocols on how to deal with this.

That is so frightening that you struggle to access basic healthcare as you do. GP’s should absolutely have a protocol for that type of behaviour.

@Dustyboots

Why is there never any fight for equality - as far as disability is concerned?

It seems so forgotten and ignored.

We make such a fuss (and rightly so) about gender and racial equality etc - but disability seems barely ever to be mentioned.

This is the main issue - apart from people who have family members or people who work with people with LDs, very few people care. They’re the forgotten minority.

If a mental health specialist can not see a patient without the carer present because of aggression, What’s needed are specialist services, who have time and training to deal with it in a way that they’re not putting themselves at risk. I suspect many services used to come under the ‘mental health’ category which has been stripped to the bone

Some of the mortality from COVID results from an inability to tolerate CPAP. Such patients are often then palliated as the only other option is escalation to ICU. And that's where the problem lies, not in itself a dnacpr. It's the ceiling of care decision. By the time your heart stops, it's stopped. Dnacpr or not, with Covid most people aren't coming back from arrest. The question to ask is how many people with LDs have been deemed for ward level care only - and why. Dnacpr is a red herring in mortality terms.

@Trumplosttheelection

Some of the mortality from COVID results from an inability to tolerate CPAP. Such patients are often then palliated as the only other option is escalation to ICU. And that's where the problem lies, not in itself a dnacpr. It's the ceiling of care decision. By the time your heart stops, it's stopped. Dnacpr or not, with Covid most people aren't coming back from arrest. The question to ask is how many people with LDs have been deemed for ward level care only - and why. Dnacpr is a red herring in mortality terms.

@Trumplosttheelection

My professional experience over the last year is mortality rates are higher due to a combination of the following;

• General medical staff do not have the understanding or education of how to care for people with learning disabilities. (Not a criticism of individuals but of a paternalistic, risk averse system.)
• General medical staff do not have the time to give to people with higher needs due to limited resources and being understaffed. (Again not a criticism of individuals.)
• There is still a lack of understanding of the law. Some people are legally entitled to an informal carer with them in hospital despite covid visitor restrictions.
• Symptoms of Covid are not picked up on due to atypical presentation, unless people are regularly tested which is obviously happening more now.
• As society, we still don’t consider the lives of people with learning disabilities as equal to everyone else. We are moving forward and we may give it lip service but we have a long way to go.

Someone asked on one of the threads on the Feminism board, where Brighton is trying to change the terminology across the NHS re maternity care, to meet the demands of 2 or 3 'transmen' who've produced babbies, why there's not the same effort put in with regard to so many more disabled people.
It's a good question!

I’m not going to get into a debate about what is an isn’t an appropriate use of NHS time - I’m sure trusts could handle both coming up with polices around language and addressing inequalities impacting mortality rates for disabled people, BAME people etc if they wanted to.

A policy on language changes is quick and easy. Changing the way disabled people are treated within the system is not. It’s not one or the other.

@SinkGirl

I’m not going to get into a debate about what is an isn’t an appropriate use of NHS time - I’m sure trusts could handle both coming up with polices around language and addressing inequalities impacting mortality rates for disabled people, BAME people etc if they wanted to.

A policy on language changes is quick and easy. Changing the way disabled people are treated within the system is not. It’s not one or the other.

I think it goes very much to the question; look at the dozens and individuals who had a say in regard to Brighton's policy. Can't find the link now, but I believe the policy is to allow 'transmen' (both of them) to pave prior tours of birthing-hospitals, arrange extra support and inclusivness when they're there there, etc.

It's reasonable to contrast this with the treatment of learning-disabled people, who are sometimes being killed-off.

I think LD are in group 6
People with profound and severe LDs are group 6 - people with mild to moderate learning disabilities are not in any priority group, despite also being at higher risk of dying of Covid.
www.nursingtimes.net/news/coronavirus/covid-19-vaccine-policy-for-people-with-learning-disabilities-unfair-26-01-2021/

The JCVI does go further than that includes individuals with cerebral palsy, severe or profound learning disabilities, Down’s Syndrome, multiple sclerosis, epilepsy, dementia, Parkinson’s disease, motor neurone disease and related or similar conditions; or hereditary and degenerative disease of the nervous system or muscles; or severe neurological disability.
Plus younger adults in a care home plus major mental health problems.

Perhaps some people are being missed and are not covered by any of the above

This is absolutely tragic. A huge cohort of our society’s most vulnerable have been treated abhorrently during this pandemic. Not just in terms of treatment and vaccination, but lack of access to proper care during lockdown.

My sister has Down’s Syndrome and luckily, received her vaccine a couple of weeks ago (we are in the Midlands) as she is classed as group 4. But why is this happening to so many others who are in such dire need??

I thought you had to be over 16 AND have LD to be level 6???

My son has severe learning difficulties and autism and it's so scary 😢
He's 16 he has his whole
Life ahead of him and it's crazy that I will be given the vaccine before him as his career 😡

@santabetterwashhishands

My son has severe learning difficulties and autism and it's so scary 😢 He's 16 he has his whole Life ahead of him and it's crazy that I will be given the vaccine before him as his career 😡

Severe LD over age 16 is group 6, same as carers

Apologies for large number of typos in previous thread!

Severe learning difficulties is different to severe learning disabilities. At 16 it depends on the person doing the diagnosis as if previously a paediatrician some prefer to diagnose as to not influence the outcomes so are more cautious with the diagnosis severity. Many also have long gaps in diagnosis reviews if there is no health concerns.

It’s also the problem with the criteria is that there is no test so the difference between moderate and severe could be as simple as an opinion especially with autism as one area can be assessed as low whilst another area higher. Diagnosis can be very mixed.

@Boulshired I don’t think the “criteria” for the different levels of disability are as intangible as you think. It’s a tick box not a feely thing.

DS2 diagnosis is now being prepared for transition to over 16 support. He has a paediatrician report with a diagnosis of moderate learning disabilities and a CAMHS paediatrician report with severe learning disabilities. Paediatrician/ consultants differ and other than for covid vaccines there is not really an importance. The diagnosis is mainly from school, respite, social services and myself. Both paediatricians did not have him physically in the room when the diagnosis was given, he has not been seen for over four years as they cannot get him to engage. Many of the children at his severe/profound learning difficulties school will not have a recorded learning disability diagnosis and those who do will not all be classed as severe but they all are vulnerable with high care needs. It’s the decision to cut off moderate and severe as a blunt tool that is a problem.

There always is a cut off and I think it will probably be using the PIP list as they are focusing on 16+. My ds is a similar sounding chap and stage.