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

@DinoHat

Could this be partly because people with learning disabilities tend to have other health problems?

Does it bloody well matter ?? We are treating other people with underlying health conditions.

Imagine the outrage if we started to put DNAR's on everyone who is overweight and obese in this country because that is also a health condition which leads to higher risk of death with covid !

Absolutely disgusting that this is happening and being swept under the carpet !

I'm really shocked. I have never seen this happening on my ward. If anything our patients with additional needs have been prioritised. I'm shocked to think of this happening

Utterly shameful.

Because unfortunately capitalism means that our society doesn’t value those who may not be able to contribute their labour. It’s alarming how many people, if they are honest, believe that disabled people are worth less than everyone else.

Ableism has always been rife but I’ve seen so much of it since COVID started. Comments that would never be allowed to stand if they were about race or sex have been all over MN and social media.

This is another level - anyone who’s been found to be putting DNRs on anyone’s records without consent should be subject to an investigation. Where is the scrutiny?

I completely agree. It's a complete violation of medical ethics and staff doing this (and anyone overseeing policies encouraging other staff to do this) should be held accountable.

I'm really sorry to the OP and other parents on this thread who are, completely justifiably, so personally hurt by this - I'm horrified, but I can't imagine how much worse it is if this is something that could affect your child

I agree it is a scandal. Also I can’t believe they have no one to advocate for them in hospital. Surely a parent should be allowed to stay!
It makes me cry, thinking how lots probably don’t know what is happening.

@BryanAdamsLeftAnkle

I'm really shocked. I have never seen this happening on my ward. If anything our patients with additional needs have been prioritised. I'm shocked to think of this happening

I know it’s hard to believe if your experience is so different from this.

I would love to say I’m shocked. To be honest in the last few months in several support groups I’ve seen people saying this is happening and I thought surely not, not after what happened last year. I’ve seen people told they are scaremongering or making it up or some kind of conspiracy theorist.

Which hospital or GP has put a DNR on someone purely because of their LD, since the first wave? This article is a bit short on facts. It would be a scandal if it were found to be true.

Who should be in which priority group for vaccines is always going to be controversial. This is why it's not the government who decided it but the independent JCVI, who base their decision on statistics on who is most likely to die.

In all honesty I am afraid if DS2 goes into hospital he would be sectioned and we would need to fight to get him back. So him getting covid and needing treatment is a huge fear. He has been diagnosed with moderate but will probably be diagnosed with severe once out of education according to his paediatrician. Hospitals and really any medical services are not well equipped for people like my son.

I work with adults with LD, some very able, some very profoundly disabled, we had our first vaccinations the other week, as did the people we support, I’d be shocked if this wasn’t being replicated elsewhere.

Bit sceptical about the DNRs, although I know voyage (another company that cares for adults with LD were outraged in the first lock down as suggestions for people they support to have dnrs was received. I wonder if it was a particular area/Health trust as we didn’t receive anything in regards to people we support.

People with LD are more likely to die for a variety of reasons, but before covid 49% of people with LD died from respiratory causes, many have dysphasia so it makes sense they are so vulnerable to covid, they absolutely should be in the first phase of vaccine rollout.

The DNR is about how likely one would be to survive a cardiac arrest. The chances are very slim in all settings. It's not about how worthy the life is.
All residential home residents are being vaccinated.
LD is a huge umbrella term and it's very hard to see how LD in itself would make you more likely to die, because it just wouldn't. It's the other comormid conditions. That's what I imagine a pp was saying.

Learning disabilities is not that big of a group especially if you remove the number who would be vaccinated in residential settings and those who fall under another category. Learning disabilities in the UK really needs a new name as it is often interchangeable with learning difficulties.

@raffegiraffe

The DNR is about how likely one would be to survive a cardiac arrest. The chances are very slim in all settings. It's not about how worthy the life is. All residential home residents are being vaccinated. LD is a huge umbrella term and it's very hard to see how LD in itself would make you more likely to die, because it just wouldn't. It's the other comormid conditions. That's what I imagine a pp was saying.

Really?

I know what a DNR is, thank you.

You are missing the point. Placing a DNACPR in a patient’s file without their consent / the consent of the appropriate person if they don’t have capacity violates medical ethics, even more so when nobody is informed that it has been done. What a surprise that some people are yet again keen to find an answer to this that’s more palatable, even though this is not the first time this has been reported specifically in relation to COVID. You are wrong if you think that “just learning disabilities” doesn’t result in higher levels of adverse outcomes even when there are no other risk factors.

And to the PP who’s a “bit sceptical” - why is that, when precisely this happened last year?

Yes this is terrible. Loads of people with LD round here have not had the vaccination yet, in fact I know very few who have, and they have got it because of age.

I just don't understand - what's the justification? I don't mean ethically, because obviously there isn't one, but clinically - on what basis could such a decision have been taken? Surely doctors must have to be given justifications for the instructions they are given?

@hatgirl

I'm not sure how it's working in all areas but I work with people with learning disabilities and they have all nearly had their first jab now. I'm talking at least 100+ people age 20 - 80 that I'm personally aware of.

The DNAR is highlighted by covid but not caused by it. It's been an issue for a loooooong time. Shameful.

This

My friend has to argue for the doctors not to put a do not resuscitate on her daughter everytime she gets admitted to hospital.

Then a family members take it in turns to stay. In the past different doctors have come on duty and tried to put DNR on her. It is bloody scary.

@Sameshirt

I agree it is a scandal. Also I can’t believe they have no one to advocate for them in hospital. Surely a parent should be allowed to stay! It makes me cry, thinking how lots probably don’t know what is happening.

Yeah this thought has tortured me and my mum for a year now. My sister has moderate learning disabilities and autism (so wouldn't be in group 6) but moderate is not being able to read or write, unable to live independently so still lives my parents at 35, cant cross a road on her own etc. She needs so much support, particularly emotionally and would not be able to understand at all what was happening for her in hospital, make decisions or even describe how she feels very well. The idea that she would be alone on an adult ward is horrifying. Fortunately she has epilepsy so will be in group 6.

This is shocking, but sadly it doesn't shock me.
This is the one and only reason I still in the back of my mind and considering having the vaccine. I have serious drug allergies and it's been agreed I shouldn't have any of them (not open to debate or indeed anecdotes of people with allergies who have had them - I am not able but on MN people like to tell me I can ).... However I work with vulnerable young people as an SEN teacher. I've had covid and it was very mild (despite being CEV, I've not shielded & worked throughout) so for me not having the vaccine doesn't worry me in the slightest... But as I discussed with my GP this week, I want to do it for the people I work with to protect them ... For things like this !! I'm so torn

@hatgirl

I'm not sure how it's working in all areas but I work with people with learning disabilities and they have all nearly had their first jab now. I'm talking at least 100+ people age 20 - 80 that I'm personally aware of.

The DNAR is highlighted by covid but not caused by it. It's been an issue for a loooooong time. Shameful.

I also am a carer for adults with learning disability in Supported Living. My colleagues and I were offered the vaccine in early January and 3 of the 4 service users have had it now. The fourth has a needle phobia so has not had it. I'm in the North West.

I am quite amazed that there is not more general media coverage and outrage but I guess this reflects also the attitude big the general population which sees those with learning difficulties as a burden and disposable.

Theres barely been any mention of adults with LDs stuck at home for a year, no access to the usual things they do, often unable to use tech independently. Struggling to understand whats going on in the world. Its incredibly isolating and parents and carers are under huge pressure.

You need to discuss but you don't need consent.
It's horrendous to put families in that situation. Most families want everything possible done, understandably, even if CPR would be futile.
It depends on the chances of restarting the heart. Much better chances if previously healthy body systems. It's not a moral decision, like I said.
You can't put learning disabilities as a reason. The form specifically asks for the conditions which means CPR would be very likely to fail once the heart has stopped.

Totally agree SinkGirl this is appalling.
I know the big charities are trying to fight this and local groups. The media aren’t interested. It’s shocking inequality. I had to beg my doctors to move my Son into group 4 as he was waiting for group 6. I was offered the vaccine b4 him through work yet I work from home! He has profound and multiple LDs and can’t walk, non verbal & epilepsy. It’s just immoral and we have to stand up against it for the vulnerable.

My GP last week refused to put my son in group 6 with me (his carer) because his learning disability isn't 'profound enough', yet he's in the group that is 30 times more likely to die.

Luckily my area has decided to vaccinated ALL over 18s with lds regardless of the severity so hopefully other areas will follow ASAP.

www.kentandmedwayccg.nhs.uk/news-and-events/news/residents-learning-disabilities-added-vaccination-priority-list

@Kitewoman

I am quite amazed that there is not more general media coverage and outrage but I guess this reflects also the attitude big the general population which sees those with learning difficulties as a burden and disposable.

I think you are right. Look at how few posts there are on this thread, while threads about celebs breaking lockdown rules quickly fill up.