New/updated guidance from Government publications for Clinically Vulnerable and CEV (Update 4/1/22)

[Moomin8]

Introduction

This page includes specific guidance for people aged 12 and over whose immune system means they are at higher risk of serious illness if they become infected with coronavirus (COVID-19).

This page contains useful information on:

who the guidance is for

keeping yourself safe

eligibility for additional COVID-19 vaccine doses

eligibility for new NHS COVID-19 treatments if you become infected

Who this guidance is for

Immunosuppression means you have a weakened immune system due to a particular health condition or because you are on medication or treatment that is suppressing your immune system. People who are immunosuppressed, or have specific other medical conditions, have a reduced ability to fight infections and other diseases, including COVID-19.

Most people in this group will be under the care of a hospital specialist.

People in this group, and who should follow this guidance on keeping yourself safe, have been identified in one of 2 ways:

1. Eligibility for a third primary dose of the COVID-19 vaccine.

2. Eligibility for new treatments for COVID-19.

Further information on who is included in these 2 groups of people is included in the sections on vaccination and new treatments below.

gov.uk/government/publicati...

[Lolabridge]

Thank you for posting Moomin.I’m very concerned about the testing changes for the public being proposed today. ☹️

[Moomin8 in reply to Lolabridge]

Hmmm...so am I. I am on day 6, according to the Government's rules (counting day 1 as the first day after my positive PCR. However, I've had symptoms for 8 days (this being day 8 for symptoms) and I would have be positive for at least 2 days before that! I did a LFT today and I'm still positive. I expected that because I still have symptoms: headache (albeit not as severe now), dry cough (sometimes a bit more productive now), blocked ears and sinuses (now taking Amoxicillin as infected), a snotty, stuffy nose and very, very weary...albeit I'm up and about now in the day and having a better night's sleep. So my argument is that if I simply went by symptoms and a positive LFT at the beginning, I could be thinking that I would be beginning to think I could go out if I didn't have anymore LFTs to test!

[Lolabridge in reply to Moomin8]

Yes that is most concerning. Sorry to hear you are still suffering and hope you feel much better soon.

[Summerrain14 in reply to Lolabridge]

Me too lovely. I just don’t think those of us that are classed as CEV are being considered too much by our workplaces. My manager has spent the last two days sending out risk assessments that they have completed which is reassuring in one way but it is generic. Looking at the guidance to this great post is states people should work from home where possible which it is possible in my job role but not being offered. I feel like I will be seen to be making a mountain out of a mole hill if I ask for this and now with the changes to isolation period and going on at me about how mild it is I feel really uncomfortable about it all x

[Hidden in reply to Summerrain14]

I know! I had a risk assessment done weeks ago stating I shouldn’t be face to face with covid and should come off the on-call rota or at least not be on call on my own but nothing has actually happened in response to that so I am still plastered all over the rota 🤷🏼‍♀️. Thankfully (sort of) my morning sickness got out of control and I got signed off for a few weeks just as omicron hell broke loose but due back on Monday.Make sure you are kept safe at work - it‘s just not worth risking your safety!xxx

[Moomin8 in reply to Summerrain14]

I have a rolling risk assessment at work (a primary school) and, to be honest, they've been amazing! They even shut the school every Friday afternoon (apart from those who had to stay) so that the teachers had their PPA then! It wasn't particularly popular with everyone, but it only ended when I was absolutely sure that I was ready to be back in class teaching everyday, covering all PPA. While I wasn't in class, I had plenty of other work to do which was very relevant and worthwhile. I always feel cared for, listened to and a valued member of the team. I consider myself very, very lucky. Even now, I only have to voice any concerns and they're taken in consideration; it is definitely a 2 way conversation. I was shielding for around a year, but during that time, I worked every day, remotely.

[Hidden in reply to Summerrain14]

Morning. I would look at the ‘Access to Work’ site. On one of our letters it did say there were measures in place to help. Worth a read and then send the link to HR voicing your requirements. You are covered under the Equality Act for ‘reasonable adjustments’. Don’t expect ‘people’ to know anything about your condition/ CEV status.

[Pea3]

I believe that I am in this vulnerable group being on biologic treatment, but I haven’t had a recent letter from nhs England or been invited for a 4th Covid vaccine. Have been in touch with 119 & GP surgery, neither really knew about this information for immunosuppressed, not sure where to go next. Any advice gratefully received.

[3LittleBirds2 in reply to Pea3]

Hi, I haven't either and I'm on Rituxumab, the guidance says if we haven't heard anything by the 10/1 to call 119 but not great if you've tried that already and they don't have a clue!! I guess all we can do if we were to test positive is to mention we are immunosuppressed so that we get the anti vitals. It really has been a shambles..which is not a surprise! Thanks Moomin for posting this also x

[Aperson99 in reply to Pea3]

I only got my letter yesterday so there may still be time for ur letter to arrive, hopefully!

[Hidden in reply to Aperson99]

Ooh, that gives me hope. My letter regarding my 4th jab was very late so maybe I will still get a letter re priority access to treatment. Thank you!!

[Madmusiclover in reply to Pea3]

Talk to your rheumatology team.

[Hopeful1 in reply to Pea3]

I was the same as you. On line would not let me book but walk in clinic gave me jab and were very familiar with our problem.

[Briefencounter in reply to Hopeful1]

This was my experience as well . Vaccination centres , especially walk-ins , are very clued up . Thankfully !

[Moomin8 in reply to Briefencounter]

That's great to hear!

[Pea3 in reply to Pea3]

Thank you for the replies & info. I phoned my GP surgery & I am meant to be getting a call back next week, failing that I will try our local vaccine centre. I haven’t managed to get through to my rheumatology team at all, I’m sure they are all up to their eyes at the moment.

[Moomin8 in reply to Pea3]

Good luck!🙂

[Pea3 in reply to Moomin8]

Thank you x

[Moomin8]

I'm not surprised that you have had that response. If you're able to read my previous posts, you'll see how I've managed to organise both - it's been a right palava!

[jigsawpuzzler]

Thanks so much for posting this, Moomin8.

I hadn't seen it before and it's very useful.

Even after all this time, I still don't know if this applies to me or not though.

I'm only on 12.5mg methorexate a week and just can't find out if this makes me eligble for a booster vaccine (I've had three) or these new treatments.

I've had letters in the past telling me I should shield because I'm vulnerable etc, but that all seems to have stopped now and I haven't had the letter about getting a PCR test and new treatments if required.

Does anybody know if my if I'm eligible on this dose of methotrexate?

[nomoreheels in reply to jigsawpuzzler]

I would think so. I'm on MTX but 17.5mg not 12.5mg & have had all mine to date, 1st, 2nd, 3rd primary & booster. My GP Practice contacted me for each vaccine appointment. I should add that I’m also on steroids albeit a relatively low dose. Chris Whitty is regularly on TV in ad breaks asking for everyone who hasn't to have the booster.

I've also been sent the PCR testing kit & in the link Moomin has provided it states under Treatments -

New treatments for COVID-19 are available through the NHS for people aged 12 and over who have tested positive for COVID-19 and are at highest risk of getting seriously ill in spite of being vaccinated. This includes some people who have… then lists certain groups which includes

• certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)

If you're still uncertain then I can only think of asking your Rheumy for clarification but I think the above is reasonably clear. I hope you get sorted either way. 😊

[jigsawpuzzler in reply to nomoreheels]

Thanks so much for your reply, no more heels.

I managed to get my third vaccine put down as a third primary, but the medics around here have been pretty clueless about everything so far, and it's very hard to get in touch with anybody in my rheumatology deparment.

I know at one stage the government were mentioning a dose of over 20mg of methotrexate for people wanting a third primary, but they just mention rheumatoid arthritis on this link, as you say, so hopefully I am eligible.

Will try and get in touch with rheumy to confirm, but thanks so much for your help!

[nomoreheels in reply to jigsawpuzzler]

You’ve done better than me then! Can I ask you managed to get it changed?

[Moomin8 in reply to nomoreheels]

It's in the process of being changed, presuming you mean changing my booster into a 3rd vaccine? 🤔I called 119 and chose option 1 and then 4 (can't remember now) which takes you through to the Covid Data Resolution Centre. Having logged my complaint, I was told that it will take some time for them to get back to me. They will only try 3 times and if I don't answer, I'm to start the process again!!! 0186981719 is on my bat phone now! 😂😂

[nomoreheels in reply to Moomin8]

Thanks Moomin. I hope yours is amended too.

[Moomin8 in reply to nomoreheels]

🤞Thanks

[Briefencounter in reply to Moomin8]

I wouldn't worry about it being changed on your record . I was able to get my 4th jab by going to a walk-in and speaking to the army medic there . I took corroborating evidence with me , ie evidence of 2 primary jabs and 1 booster + letter from rheumatologist concerning a 3rd primary . The medic listened to my explanation and said he didn't need to see the paperwork , but thanks for bringing it along . So I now have 2 primary jabs and 2 "boosters" recorded on my medical records . I doubt that this will be changed . I think everyone is so keen to get us all protected that they're grateful that we take the opportunity. I dont think too many people would try to get more than their correct number of vaccines .

[jigsawpuzzler in reply to nomoreheels]

I didn't get it changed. I just told the person entering records of vaccinations that I thought mine ought to put down as a third primary, and she said she'd done that.

Think I was lucky!

[Moomin8 in reply to jigsawpuzzler]

You were lucky! I asked that when I had my 3rd vaccine, which she agreed I was having at the time - she worked on the ward where she gave Rituximab to RA patients - but she physically couldn't do it; the system wouldn't allow it. She did what she could, which was to write a not against my records. However, this hasn't translated through to my NHS records. This was 30th September, so maybe just early doors 🤷🏻‍♀️

[jigsawpuzzler in reply to Moomin8]

Yes, maybe, although I think mine was just recorded as a note as well, so goodness knows if the information is actually on my records.

I had my 'third primary' in November so time will tell if it's been recorded as that.

[nomoreheels in reply to jigsawpuzzler]

I suppose it will all be ok as each are listed correctly on my vaccination cards. It's just preferable if my medical record is correct. Thanks.

[jigsawpuzzler in reply to nomoreheels]

Yes, I see your point, but hopefully all will be OK

[Boxerlady in reply to jigsawpuzzler]

I've been contacted by the hospital pharmacy which provides my 20mg Metoject to say that I'm eligible for a third primary and a booster. I haven't done anything about it yet as my booster won't be due until February. I was on the CEV list and received various letters and emails but haven't heard anything about the PCR or treatment and tbh am not really expecting to. I think that it's likely that many more people will be encouraged to have a booster (fourth dose) and eventually we'll be having an annual vaccine like the flu jab so personally I'm not too bothered about waiting until I'm called as I don't feel that I'm as vulnerable as many others.

[jigsawpuzzler in reply to Boxerlady]

No, I don't feel as if I'm as vulnerable as other people either, but I'd still like to be able to have a booster and access to the new treatment should I ever need it, and hopefully I'll soon find out if that's possible.

[GinnyE in reply to jigsawpuzzler]

I believe the British Rheumatology Society stated anyone on methotrexate should qualify, one reason being it was going to be too difficult for Specialists to trawl through individual cases. I'm on 20 mg methotrexate but the original JCVI guidance stated > (more than) 20 mg, so I was glad the BRS guidance included lower doses.

[jigsawpuzzler in reply to GinnyE]

Yes, I remember reading about the BRS recommendation, but I'm just not sure if the government agreed to it or if anybody on a lower dose can receive the new treatment.

Have emailed my GP but no response as yet.

[BoneyC in reply to jigsawpuzzler]

I'm in the same boat - reduced 20mg to 17.5mg MTX last summer but was included on CEV list by GP at start of pandemic, received lots of letters from Gov, NHS, local Council etc.

Rheumatology messaged in October last year saying I would get a letter, I didn't, had 'booster' but now going through the ringing 119, choosing option for the Validation Data Resolution Service (VDRS) who were helpful and filled out form over phone to get 'booster' dose changed on NHS computer to '3rd primary dose' to enable me to book a 4th dose/booster. Will take 21 days and they will phone me.

Rheumatology have not responded to December message via My Chart or email address on consultant's letter and GP Surgery/Receptionist (hard to get past them now not allowed in to building!) refused to print letter from Green Book.

Nurse offered to print letter a week before Christmas when having bloods taken but told her too late, had 3rd dose recorded as a 'booster'. She spoke to a GP who apparently (according to my GP record) telephoned me to say ask Rheumatology, when she did not phone at all!

I ended up phoning our CCG who told me about phoning 119 VDRS.

If I were you I would contact as many of your team as you can, if that fails to reach a conclusion, contact your CCG and 119. It seems unfair that the immunosuppressed are having to take matters into their own hands to sort out the Gov/NHS's failings.

I thought a Welsh website explained things better than England's:-

sbuhb.nhs.wales/go/covid-19...

[jigsawpuzzler in reply to BoneyC]

Yes, it does seem unfair that the immunosuppressed are having to take matters into their own hands, doesn't it?

Seems as if we've been more or less forgotten now.

Thanks so much for your advice. I'll contact everybody and try and get it all sorted.

[Kerensa56]

Thank you for posting x

[nomoreheels]

Thanks for this Moomin. There does still seem to be some confusion, hopefully this will clarify.

[MadBunny]

Thanks for this. I had a third jab in November which was put down as a booster . I'm still waiting for a reply from Rheumatology about what I should do.

[GinnyE]

Thanks for this. I guess I'll be on the blower to 119 on the 10th of January!