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Urgent Update from The Down’s Syndrome Association

The Down's Syndrome Association have been working very hard over the last few months, responding quickly to issues and helping to shape information provision, and have provided the following information for adults with Down 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 of the COVID-19 vaccination priority list last week (here 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. Please ensure you speak to your family GP to confirm that they have anyone over the age of 18 with Down syndrome coded on their records as Clinically Extremely Vulnerable.

 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 .

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