refused 5th Covid vax.: I took my reminder letter from... - NRAS

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refused 5th Covid vax.

tangolil profile image

I took my reminder letter from NHS to the walk-in vaccination centre at Queen Mary's Hospital, SW15 but they refused to administer it on the grounds that Sulfasalazine is not immunosuppressing so I didn't comply with the criteria in spite of being CEV and 86 years old with comorbities ... They insisted that only patients taking Methotrexate or Biologics are eligible. My reminder letter said that I was over 75 and had an autoimmune disease. My reasonings were ignored as was a request to contact my GP or my Rheumatologist (who had asked me to get it done so that I could have a steroid jab four weeks later to help with the flare I've had for nearly a year). I have since telephoned 119 and had no problem in booking a jab on Monday evening, Why are the 'rules' so open to interpretation, I wonder... Any ideas?

63 Replies

I think you may need to take a letter from your rheumatology team explaining their reasons for requesting a 5th vaccination as the Green book Ch14a (the ‘bible’ for all healthcare professionals) is very clear that sulphasalazine doesn’t count as an immunosuppressive drug, and therefore you wouldn’t be eligible (5th dose uses the same criteria as 3rd dose). Here is the link to the Green book ch14a assets.publishing.service.g... I’ve attached a photo of the relevant section of the criteria in box1.

I fear you may have the same problem when you get to the vaccination centre on Monday.

Green book chapter 14a box 1
tangolil profile image
tangolil in reply to bpeal1

How very kind of you bpeal1 - now I understand their refusal. I wonder if I will be able to get it done on Monday evening at the new centre? I will let you know!

I've been on a biologic for about 8-10 years now but couldn't get the first Vaccination until i qualified due to being over 50. Couldn't even get past the gate keeper receptionist at my GP to even discuss if i should be in the vulnerable category. My Consultant said they just pass the relevant info to the GP and its up to the GP to decide. Although my consultant said i should of been on the Vulnerable list. Its seemed to be a post code lottery from the start.

tangolil profile image
tangolil in reply to chunkypie

Sorry to hear you had a problem chunkypie - these things are sent to try us ... At least your Consultant had some sort of explanation for you .. It's just so frustrating trying to convince those in power over vaccination disposal that one has a valid point or two ... Probably Jobsworth .... Sympathies.

A lot of the problem is that much of this is new, and with staff shortages training has gone out of the window. So some nurses don’t want to take risks, and if they are not sure it is easier to say no.

tangolil profile image
tangolil in reply to helixhelix

You have a point or two there helixhelix - the voice of reason as usual! At the time of the 'interview' with the nurses it wasn't my first thought that they might be unprepared for such a problem. The system was blamed for the inability to access my previous records from the clinic where I received my other jabs because they could see on their records that I had only three vaccinations (although my NHS app clearly shows four) plus the guidelines set out by the Green book about sulfasalazine not being immunosuppressing as pointed out by bpeal1. Saying no was the best solution for them but not the patient ....

I think this is in part due to the fact that treatments are available which work extremely well. And so the vaccine is good but only part of the overall picture. I got called by GP some months ago now and been told we'll get a 6th 7th etc eventually it will be part of the yearly flu jab. Personally I've had Covid after 4 jabs and got the antibiological infusion it was no worse than a mild tickle. So I hope you get your 5th vaccine and get the steroid injection too.

tangolil profile image
tangolil in reply to medway-lady

Thank you medway-lady. I had no problem booking with 119 so perhaps it's just the walk-in clinics who are reluctant to give vaccines to those who are not 'by the book' eligible? I will attend my appointment tomorrow evening at my usual vaccination centre and (being a positive sort of person) I hope for the best outcome... I look forward to having the steroid jab too - it'll be a relief!

I was lead to believe that to have the 5th vaccination you need to be on higher dose of Methotrexate 20 mgs or more or Biologics or Steroids. It’s confusing as being clinically vulnerable dosnt automatically mean you fit the criteria. I had to sort mine out myself as was not invited. See what they say at your appointment they should have all your records there. X

tangolil profile image
tangolil in reply to Otto11

Yes they should! fingers firmly crossed! Thanks for replying.

Contact you GP and if they write a letter saying to administer the 5th dose you should have no problems. I just had my 5th and they said there was a shortage of vaccines in my area so they had also stopped walk ins and were taking bookings only. Good luck

tangolil profile image
tangolil in reply to Shelby37

Thanks, I hope it's all sorted by my appointment this evening. What a palaver!

I was told this by my local vaccine centre( Lincolnshire). They did say if you are CEV it doesn’t make you eligible for a 5th vaccine. I am not CEV but inject with a biologic and I am eligible. The 5th vaccine seems to be dependent more on the medication you take 🤷‍♀️

tangolil profile image
tangolil in reply to Bails67

I'm beginning to get the picture now thanks to all the lovely people on this forum. I pity those who are not yet in our fortunate place (here) and have no help in their endeavours to abide by the instructions given by their health advisers which are negated by the very people one thinks would be sympathetic and understanding.... or even helpful!!!

Bails67 profile image
Bails67 in reply to tangolil

I know, it’s not been easy has it, The hospital must be fed up with us phoning and asking for letters. My nurse wasn’t too pleased she said they should know the guidelines. Hopefully we are a lot safer now with the vaccines we have received and can have a normal life again. Take care 😊

Hi they are correct from a rheum perspective but as you are 85 you still qualify for no 5 jab.

My response exactly - but totally ignored! Rock and a hard place? Yeah...

My mum cannot get a 5th she is in heart failure and has been very poorly, she is 80. I wonder if you are lucky depending on your area 🤷‍♀️

There is a nationwide criteria not local. Medically there may be other reasons why she cannot have it

Yes, she isn’t on immune suppressants. That is the reason. Her age and illness don’t make her eligible.

bpeal1 profile image
bpeal1 in reply to sparklyshazza

No over 75s are only eligible for 4. The first two primary doses, the autumn booster and the spring booster. People on certain immunosuppressive medication (see picture above) are eligible for 5 made up of 3 primary doses, the autumn booster and the spring booster (it got slightly confusing in the autumn as the decision to give 3 primary doses was made quite late so many people were getting their 3rd primary doses at the same time the autumn boosters were being rolled out).

tangolil profile image
tangolil in reply to bpeal1

I have had four primary doses in spite of taking Sulfasalazine which is not now regarded as immunosuppressant ... Perhaps this next will be the Spring booster???? I will let you all know when I've been to the centre this evening. Fingers crossed.

bpeal1 profile image
bpeal1 in reply to tangolil

That’s interesting as according to the criteria nobody is eligible for 4 primary doses. There is one person I know of on this forum which due to a complication from medication made no response to the initial vaccinations and has repeated the primary vaccinations but she had to have special blood tests and input from an immunologist for that to happen. I hope you get it sorted as it sounds as if things have got very confused.

Certain medications are known to increase the chance that the patient does not respond as effectively as other people to the vaccine. It is not about how vulnerable your general health makes you. So the 3rd primary (and therefore the 5th jab) were only intended for people who were taking those medications at the time of their previous vaccinations. If you do not not take one of those medications, then the belief is, apparently, that you have probably mounted a good response to the previous jabs and are therefore well protected, even if you are CEV. Similarly, if you NOW take methotrexate (for example) but didn't when you had the previous vaccinations, then you don't need the extra jab because you are already protected. Hope that explains.Either way, if your rheumatologist thinks you should have the 5th jab, then i hope you succeed. Good luck xx

tangolil profile image
tangolil in reply to Ascidian

Thanks for the good wishes. I note all your splendid observations and thank you for your help.

From what I understand if your having a booster you only have half a dose of the moderna vaccine, if it's Pfizer you get a full dose.

Frances_UK profile image
Frances_UK in reply to Paula-C

Thanks. Felt absolutely horrendous for 24 hours so definitely had a response to it.

How very annoying for you! Surely the fact that you are over 70/75 alone allows you to receive the 5th vaccine. I do hope you have better luck next time. You’d have thought that because you had made the effort to go in plus had a letter, they’d have lapsed the rules and done it because of your age.. I have to say I always thought sulfphusalazine was immunosuppressant. I stand corrected.

Good luck and I really hope you receive it this time TTx

tangolil profile image
tangolil in reply to Tessthomy

Yes, me too - I was, in fact, told that Sulfasalazine is immunosuppressant by my Rheumy and all the info on Google etc., say it is .... but we live and learn, eh?

bpeal1 profile image
bpeal1 in reply to Tessthomy

No over 75 only entitled you to 4. See my reply above.

After getting an invitation letter to have my 5th the Dr I saw said I should wait until end July. I was quite pleased really as it’s Moderna and my cousin had awful side effects which lasted 3 days.Thank goodness u can have yours now

tangolil profile image
tangolil in reply to Evie3

Fingers crossed for this evening.... Thanks for replying.

5 ? I’ve only had 3 haven’t been called for a fourth yet Maybe I should contact them …

tangolil profile image
tangolil in reply to Fifi2

Yes, I think you should. Too many people are falling through the 'net' ... Good luck.

madme1 profile image
madme1 in reply to Fifi2

I basically contacted 119 each time even after I stopped getting reminders, cause if they don't want to keep track I do!

Poor you, Frances. Their records are not up to date and I was told I had only received three jabs when I know I've had 4 and have the documents to prove the case ... They told me they cannot access records between centres so if you have used a centre that is not Q.Mary's they (and the other centres) can't find your records. They're not shared. Amazing lack of information, isn't it?

Its all very confusing, I used the green book details as I am CEV , but now I don't understand the difference between a fifth jab and the Autumn booster, who will need them.? I had to book my own third injection but it is recorded on my GPs records. I have just had a steroid injection in my leg too for pain . Good luck with yours especially if a consultant as said, hope you don't have a wasted journey. Lets us know how you get on. Fingers crossed for youx

tangolil profile image
tangolil in reply to katieoxo60

Thanks for the good wishes - yes, it's all very confusing ... I have had four primary doses of the vaccine and now I think this one will be a booster jab but, honestly, don't know until I get to Vaccination Centre this evening... I hope they can tell me! x

madme1 profile image
madme1 in reply to katieoxo60

I think my 5th jab when I asked them was the Spring Booster, though a few days after I had yo the sent me a reminder letter. We were told sometimes it can take more than 5 days for the info to load up to the system.

katieoxo60 profile image
katieoxo60 in reply to madme1

The NHS bookings do take a while but if it is a chemist booking it goes on the computer straight away so the chemist computers must be on the same system as GPs . I am registered on the GPS site and the NHS but the two don't allow access to each other even though its all your NHS record filed under your NHS number. Hence the confusion for patients. All other apps for other companies contain all your details under an account number and password. For security NHS has different passwords for all different records across the whole NHS so everything has to be uploaded by someone. And its very difficult to change your password access. No wonder theres massive patient cues on the telephone. Ihave not got a card for my third injection fortunately I am not going abroad anytime soon. Thank you for reply

tangolil profile image
tangolil in reply to katieoxo60

No wonder confusion reigns! Thanks katieoxo60.

I would also check with 119 that all your previous vaccinations have been recorded correctly as that too can create problems. I stopped receiving reminder letters and didn't get any for the 3rd vacc except for one from my rheumatology team. I was puzzled over this so, when I booked in for my 4th I asked at the pharmacy who told me my third vacc hadn't been recorded or uploaded to the system. Luckily enough, I had my letter from the rheumatology with me. It seems that whoever you have your vaccination with, may not be the administrative centre and its the details of that centre that 119 need. Now I'm told that vacc 3 is OK, it's vaccs 1 and 2 that have also been recorded incorrectly. I know yours is of a medicine nature, but I would still check your doses are recorded correctly. Luckily I'd kept the little cards with the details on as well. Now have to try and sort the others and Hey Presto! A few days after my 5th vaccine I got a letter to go for my Spring Booster!

tangolil profile image
tangolil in reply to madme1

Woo! some success then madme1 BUT you had to do all the checking up yourself. I applaud your determination and feel that I have done the same. Some of my records (like the NHS website) have correct history of jabs but others say only three given .. what a joke it all is - until you have to sort it out as we have done and the red tape is horrendous!

madme1 profile image
madme1 in reply to tangolil

Yes I filled in an econsult for an admin help, they didn't respond with in the time frame so had to send a message and they've responded giving g the ODS codes which I'll now pass onto 119.

tangolil profile image
tangolil in reply to madme1

Excellent work madme1 - but, really the service is dreadful ...

madme1 profile image
madme1 in reply to tangolil

Yes I had the person at 1 vaccination site tell me I'd had full jabs not boosters, yet snother one said I'd had primary doses then boosters.

Glad you are getting it! Right arm not knowing what left arm is doing?

tangolil profile image
tangolil in reply to Green230461

I hope I get it tonight - whatever arm they're using!!! LOL.

Green230461 profile image
Green230461 in reply to tangolil

👍

Bit confused even if you're not considered immune suppressed doesn't the factyou're over 75 on its own allow you to be given it?

Glad you found some where.

I had to book my Spring one at a pharmacy due to missing the scheduled GP one,

couldn't have it till enough time past after a steroid injection in my knee.

Flares arrrggghhh hideous bane of RA hope you get relief asap. :)

tangolil profile image
tangolil in reply to Happy5

Yes, flares are really awful and so tiring with all that pain... I'm glad your steroid jab worked for you - well done for pursuing the administration. Yes, all very confusing regarding the age thing and eligibility - it was all totally ignored anyway ... being au fait with the facts AND taking the invitation letter did not help my reasoned case with the nurses. What can one do? Thank heaven for 119.

Happy5 profile image
Happy5 in reply to tangolil

Agree find alternatives is the only thing.I do wonder if financing is part of the issue now?

tangolil profile image
tangolil in reply to Happy5

With the whole financial system in disorder (it appears) anything is possible!

I would get a letter from your GP and take that with you. Good luck.

I’m on highest dose of methotrexate for my lupus and oa and ra and I haven’t been offered a 5th jab

Boxerlady profile image
Boxerlady in reply to Poshcards

I'm on 20mg Methotrexate and have had 5 jabs. I was told by the hospital pharmacy which supplies my Methotrexate that I was eligible and I passed that on to my GP who booked me in to the vaccine centre. I went armed with evidence but as soon as I said that I was on Methotrexate, she said that I was eligible. I had 4 Phizer vaccines and then Moderna.

tangolil profile image
tangolil in reply to Boxerlady

Yes, Boxerlady, Methotrexate seems to be the new Abracadabra! Well done.

tangolil profile image
tangolil in reply to Poshcards

It's worth pursuing Poshcards - you need all the help you can get! Perhaps you are an example of 'slipping through the net'. It needs to be registered that you have been (in my view) neglected. Good luck.

Poshcards profile image
Poshcards in reply to tangolil

Thanks, I don't have much faith in my gp's. Been up Midlands 7 years now and don't have sme relationship as my old gp by far xx

tangolil profile image
tangolil in reply to Poshcards

I am so sorry to hear this - I was in Warwick hospital recently (taken ill while visiting my daughter) and had excellent treatment but the follow-up was non-existent from the GPs. Luckily I have a good, knowledgeable GP in London who is 'on the case' . There's a great lack of faith throughout regarding GPs, it seems, and support seems thin on the ground. Perhaps a change?

Poshcards profile image
Poshcards in reply to tangolil

Being g disabled hey are just around corner from me and y bloods nurse there is the best. My metho prescription comes up from my rheum consultant in Bath, Leicestershire health won't provide it for me! We certainly have to fight for things don't we, gets very tiring x

tangolil profile image
tangolil in reply to Poshcards

It's certainly convenient for you to have the surgery round the corner and the phlebotomist is the best! That's great news. I suffer greatly with blood draws and insist on going to Q.Maryls hospital where their departmet offers immaculate, first time service! It's a car journey but worth it! As for the refusal of supplying metho it's probably over their budget limits - who knows? I wish you the energy to fight as it seems to be an on-going battle. x

Poshcards profile image
Poshcards in reply to tangolil

Thank you for the 'chat' please take care xx

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