According to the Guardian, people with learning disabilities are being given COVID-19 'do not resuscitate orders' (DNARs) wrongly. An important thread for those who are Neurodiverse who may be concerned. This may be causing anxiety in the community...

...due to higher numbers of Autistic people in our community than average. Please keep in mind throughout that this is not a panic stations thread. This is complex and misreading or not finishing this thread may leave you with a very scary outlook on this. Please read all tweets.

This story first became prominent in April last year when the Financial times reported on a "Clinical Decision Tool" that NHS services would use to decide which patients would most likely to benefit from COVID-19 intensive care treatment. https://www.ft.com/content/d738b2c6-000a-421b-9dbd-f85e6b333684 (paywalled...)

Last April a spokesperson for @mencap_charity (a charity that supports those living with learning disabilities) wrote that "Mencap is concerned that this COVID-19 Decision Making Tool risks people with a learning disability being refused life-saving treatment...

and has acted immediately to address this with the NHS."

Their CEO Edel Harris saying : "we have this latest Decision Making Tool which presents a double whammy for people with a learning disability, penalising them for needing extra support with everyday activities...

...as well as for having a neurological condition. Are we reduced to refusing healthy people life-saving treatment because they have a disability? I sincerely hope not"

There were concerns that Autistic people would be wrongly issued DNARs. It is important to note that Autism Spectrum Disorder (ASD) is not a learning disability. However, learning disabilities can be more common in Autistic people.

Here is Mencap's list of conditions associated with learning disabilities: https://www.mencap.org.uk/learning-disability-explained/learning-disability-and-conditions

There is no evidence (that we can find) that Trans & Non-binary people who are also Autistic people are more likely to be issued with DNARs wrongly than anyone else.

The Guardian piece on this states that "People with learning disabilities have been given do not resuscitate orders during the second wave of the pandemic, in spite of widespread condemnation of the practice last year and an urgent investigation by the care watchdog."

The Guardian's source was @mencap_charity: "Mencap said it had received reports in January from people with learning disabilities that they had been told they would not be resuscitated if they were taken ill with Covid-19"

Full article here: https://www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties

However according to a statement put out in a twitter thread today they said: "Whilst we continue to receive reports about DNARs being misused, we want to reassure you there is no evidence of this still being a widespread practice..."

"...But historical DNARs could remain on people's files that they still may not be aware of"

The Guardian's wording on this is a little confusing, but @mencap_charity were the original source and this is their field. Their words are the ones to go with here.

As we understand it there was a situation where some people living with learning disabilities were wrongly issued DNARs due to living in social care/assisted living centers...

...where most residents are elderly and live with physical medical conditions whereas those with learning disabilities in social care/assisted living centers may have been sent DNARs based on their living situation even though they are physically healthy.

So if you saw this Guardian story and were concerned that Trans & Non-Binary people would be disproportionatly effected and denied COVID-19 related intensive care treatment due to higher rates of people with Autism in our community that is not the case.

However, this is still a VERY important issue if you are living with a learning disability.

A learning DISABILITY is not another phrase for learning DIFFICULTY. Those with ADHD, OCD and other that come under learning difficulty do not appear to be effected.

Here is a very helpful page from @mencap explaining this difference: https://www.mencap.org.uk/learning-disability-explained/learning-difficulties

A very rough description of a learning disability would be a condition that impairs everyday activities to a significant degree and includes conditions like Downs Syndrome.

BUT this can effect you if yourself or any of your loved ones are living with learning DISABILITYS. Being Trans and/or Non-Binary Autistic person without a learning disability who does not live in social care or assisted living centre is HIGHLY unlikely to have been issued a DNAR

If you believe you may be effected by this Mencap advice contacting your GP. Here is their tweet on this. Follow this if you believe you or a loved one is effected. https://twitter.com/mencap_charity/status/1360935157432279043

This is a very important story. You may jumpt to the conclusion that the Guardian misreported this due to their record of publishing transphobia. However this is a very important story and whilst their wording could have been clearer they were right to report this.

If you have any questions I will be here for the next couple of hours. However, I am a journalist, not a healthcare specialist. If you are anxious I can TRY to fill in the blanks but your first port of call if you believe you are effected should be your GP.

If you spot any innacuracies in this thread, please let us know ASAP and we will ammend.

Would also like to thank the very nice person at @mencap_charity's media centre for very patiently talking me through this. Follow them for updates on this and bookmark their website...

... https://www.mencap.org.uk .

The aim of this is to clarify a situation and diffuse any panic you may be feeling as the chances of you being effected directly are very low. But it is a very easy fix. If you find that you have been issues with a DNAR incorrectly...

...please gather as much physical or digital evidence of this as you can and DM us where we can provide you with a safe, secure way to send us these documents. Obviously this is up to you, we do not feel entitled. However if there is evidence that DNARs are being issued...

...incorrectly, we know some good people at a certain learning disabilitys charity who would be very grateful for your information so they can act on this at higher levels in the NHS.

Thank you for reading a long, complex thread. Hope this helps.