Clinically Extremely Vulnerable (CEV) patients list, also sometimes called the shielding list

[Mencap_online_comms]

Our policy team has been in touch with NHS England about adults with Down’s syndrome being included on the list for Clinically Extremely Vulnerable (CEV) patients, also sometimes called the shielding list.

Last month the decision was made to add adults with Down's syndrome to the list, because research showed that they were more at risk of becoming very unwell from coronavirus. Being on the list means that people can access some extra support, for example supermarket delivery slots reserved for people on the list. People on the list also have higher priority for the vaccine.

Originally, GPs were asked to contact people individually to let them know about this change, but there have been some difficulties and quite a lot of people still hadn’t heard anything.

We understand that people will now be added to the national register without their GP needing to be involved. Adults with Down's syndrome will get an Easy Read letter and a non-easy read version in the same envelope. We understand these letters should start to arrive towards the end of next week.

If you have any questions please post on here or get in touch with our helpline on 0808 808 1111 or email [e-mail]

Best wishes

Mencap's online community team

[Porthminster]

I got a letter on behalf of my brother who has down syndrome last week. Two weeks before that I registered my brother on the shielding list on .Gov . Tesco advised me to do this as they get the list from the Govt.I had to input his NHS number and date of birth . I got a generated response saying I would get an official in two weeks.

After two weeks I got the official letter via an email from DoHS, this was followed by letters from all the major supermarkets inviting me to join their Priority shopping. I haven't had an easy read letter and also the letter refered to a letter I should have received at the beginning of the second Lockdown.

I did also contact my brother's GP and they said that Practice Managers were putting together a list but I haven't heard anything else.

It is so frustrating as obviously I am now wondering would my brother actually be on the list if we hadn't chased and is he really on the list...

There is no transparency on how this list is managed and in how it will convert to the Vaccine list which is the worry.

Many thanks

[Sarah_Mencap in reply to Porthminster]

Hello Porthminster

I suspect that the Easy Read letter with be with your brother next week, and hopefully that will be clearer.

I am checking with our policy team again to see if they have any further update. I will post back here if/when we know more. I am particularly trying to find out more about the Vaccine list.

Best wishes

Sarah