COVID-19 and Down’s Syndrome – Update December 2020

COVID-19 and Down’s Syndrome – Update December 2020

Latest update from the DSA on COVID 19:

Adults who have Down’s syndrome
We particularly wanted to flag the announcement that the Government made at the start of November, that adults (18+) who have Down’s syndrome have been added to the list of people who are classed as ‘clinically extremely vulnerable’ (CEV) (2 November). 
GPs have been instructed by the NHS to ensure that the records of all their adult patients who have Down’s syndrome have them coded as being on the CEV list. GPs were also provided with a letter that explained the change, along with an easy read version, to send to their patients.

The announcement caused significant disruption to many people’s lives and we have been inundated with calls and emails to our Helpline. 
Sadly, we have also heard many examples of GPs being slow to take action on this issue. 

The announcement of the COVID-19 vaccination priority list last week ( and below) makes it even more important that the medical records of adults who have Down’s syndrome are up to date and correctly coded. They will not be able to access the vaccine as soon as possible if they are not coded as being on the CEV list.

We are delighted that, as our result of our efforts, adults with Down’s syndrome have been elevated on the vaccine prioritisation list to the same level as those aged 70+.

We are also pleased to note that the published vaccination priority list also includes people who have Down’s syndrome who are over 16 at a higher level than previously. They will now be included with the sixth priority group.

The vaccination priority list:
1.    residents in a care home for older adults and their carers
2.    all those 80 years of age and over and frontline health and social care workers
3.    all those 75 years of age and over
4.    all those 70 years of age and over and clinically extremely vulnerable individuals
5.    all those 65 years of age and over
6.    all individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality
7.    all those 60 years of age and over
8.    all those 55 years of age and over
9.    all those 50 years of age and over

Adults with Down’s syndrome in England are also able to request a free, four-month supply of vitamin D. This is great news as it is something we had asked government to put in place, after discussion with the T21RS research team. 
During autumn and winter, everyone is advised to take vitamin D to keep their bones and muscles healthy and to support their general health. You’ll find additional information about this, as well as a form to sign up for the free supply, here:

PLEASE be aware that the Vitamin D allowance is specific to England..!

Keeping in touch

We are regularly updating our COVID-19 pages…go to for the latest news.

Our Helpline (0333 1212 300, and closed Facebook groups ( are also available if you have specific questions or concerns.

We are holding free, 30-minute update webinars every Friday morning. 
These sessions give participants the opportunity to ask questions and for our team to share the latest news, resources and responses from government. For details of the latest session, visit our Online Training page:

‘Many thanks for hosting today’s seminar which I found interesting and pertinent. The information gained was of great value when subsequently sitting down and discussing with my daughter.’ – feedback from a parent, 4 December 2020.

We are in regular communication with the Department of Health and Social Care (DHSC), Welsh and Northern Ireland government departments as well as related NHS groups. 

We fought hard to improve the prioritisation of adults who have Down’s syndrome for the vaccine, and are pleased that government have also listened to us with regards vitamin D.

Children who have Down’s syndrome
We have been informed that very few children are at highest risk of severe illness due to the virus and that research studies have not found evidence that children who have Down’s syndrome are at higher risk than children who do not have Down’s syndrome.