Ongoing UK testing for clinically extremely vuln... - MPN Voice

MPN Voice

10,442 members14,391 posts

Ongoing UK testing for clinically extremely vulnerable patients

AndyT profile image
15 Replies

I’ve recently had a priority PCR test and a box of LFTs in the post, which I assume are as I’m on the CEV List, which is good news!

What’s missing is any letter or other advice on when to use them and how to replace them if they run out.

Anyone else had these too and/or the missing information?

Thanks

Andy

Written by
AndyT profile image
AndyT
To view profiles and participate in discussions please or .
15 Replies
amhann profile image
amhann

Hello AndyT - I had the PCR kit sent to me some weeks ago (I’m ET but also NH lymphoma so assumed that was why) - I got a supply of lateral flow packs from the chemist but also just got one through the post as well. No info but I was going on the assumption that if I should test positive at any point on a lateral flow, then I’d do the PCR to post straight away + ring 111 for if antivirals should be given. Not planning on doing any testing unless I feel symptomatic (most definitely continuing with all precautions though) - very best Anne-Marie

Wildwood6 profile image
Wildwood6

Hi. I also received a home PCR test without instructions. You can find instructions at gov.uk/government/publicati.... All the best Myke

Wyebird profile image
Wyebird

Ah thanks for that I too received a supply of LFTs

azaelea profile image
azaelea

Hi, I also received PCR test kit in post about 3 months ago. I’m not sure of procedure either. Is the PCR test still necessary if LFT positive? I’m still being very cautious but so many of us who have scraped for over 2 years seem to be getting it now. I think we have to ring 111 for advice. Perhaps somebody who has recently received the anti viral treatment can let us know how to go about it? Regards Fran

AndyT profile image
AndyT in reply to azaelea

I got an email yesterday with further instructions including the fact that you just need to do an LFT now to access antiviral drugs, not a PCR, though they may ask you to do that later. I can share the contents of the email if you haven’t had it.

azaelea profile image
azaelea in reply to AndyT

Thanks Andy, I received my email last night, so all is clearer now. Also got my box of LFT test in post just now. Have posted about this before I saw your reply. Thanks!

azaelea profile image
azaelea

My post should read “escaped”, not “scraped” !

AndyT profile image
AndyT in reply to azaelea

Haha - I think scraped is quite appropriate too..! 😂

Borage profile image
Borage

I order the LFT’s online from gov.uk/order-coronavirus-ra... and they come in the post.

AndyT profile image
AndyT in reply to Borage

That’s been impossible recently and although we should have continued access to tests I’m not sure how we will order them in future

Borage profile image
Borage in reply to AndyT

There is a new box to tick to say if you are eligible for free tests, we are because we need a test to have anti-virals, but there are still none available.

AndyT profile image
AndyT in reply to Borage

They have stocks but choosing not to send them out..! 😉

Borage profile image
Borage in reply to AndyT

Hi Andy, I have just ordered free tests successfully,Borage

AndyT profile image
AndyT in reply to Borage

Thanks - that’s good news!

MCW22 profile image
MCW22

I've not been sent any priority test like this, but then that's not surprising as I never got any invitations for jabs either. I had to fight to get the jabs, now I am in the process of fighting to get the letter and priority test kit to be considered for the new antiviral treatment should I contract covid.

Carol. Pv Jak2 + on ruxolitinib

You may also like...

Clinically Extremely Vulnerable

our MP had said. Initial email said, letters sent by health board. A couple of hours later had a...

Extremely Vulnerable letter

safe. My question is has anyone received the NHS letter saying they are in the Extremely Vulnerable...

What defines ‘Extremely Vulnerable’ for MPN?

an MPN classified as Extremely Vulnerable? I’m EV but assumed because I have very low Lymphocytes/T...

Registering as extremely vulnerable during covid 19 outbreak.

extremely vulnerable, whether or not you have had ‘the letter’. Rachel

Free Covid tests for vulnerable

no clear information. I also went to my local pharmacy and they had no idea about free tests.