Accessing vaccinations to prevent infections

[Dyzzie22]

Hi has anyone else fallen into the trap that I seem to be in. At the point of diagnosis my consultant gave me a booklet from CLL Support outlining a list of additional vaccinations to have to avoid catching pneumonia, meningitis, haemophilia influenza and shingles. I think there is a similar list on this site somewhere. I have been trying to access these but my GP is saying they can't give any vaccinations without direct instruction from the consultant and the consultant is saying they don't get involved in vaccines its down to the GP. I have spoken to both the Specialist Nurses at the hospital and the Practice nurses, but they both seem to have their protocols and I'm stuck in the middle. Help please ...

[AussieNeil Partner Administrator]

Sadly, you've struck a common problem, shared by many. Despite the recommendations in the Green Book (official UK source for vaccination advice), some GPs seem to rely on advice from CLL consultants to proceed. It's unusual for a consultant to throw the problem back to the GP. Usually they recommend to your GP that you have those vaccinations.

Here's the post you were after: healthunlocked.com/cllsuppo...

Neil

[Dyzzie22 in reply to AussieNeil]

Thank you, I emailed the specialist nurse again and she is going to speak to the practice nurse to see if she can move things forward. What would we do without their support?

[Walkingtall62]

Hi, as far as I am aware it is the GP who gives these. My haematologist suggested I get both my pneumonia jabs, before starting Acalabrutinib, which I reported verbally to the GP. GP happy to do that, just they didn’t know which to give first as I had to have both. I recall it should be the kids one first and later in the adult one. I am about to ask GP about shingles, but need to get my 4th Covid jab (not feeling 100% right now) first, then guess I will go for shingles. But again will tell GP practice verbally that this has been recommended. Was told that I wouldn’t need haemophilia flu vaccine by specialist nurse. I readily accepted that😅. I don’t like mixing vaccines, but that is just me. Take care and good luck.

[Dyzzie22 in reply to Walkingtall62]

Good luck with your 4th jab, I had that a week ago - the side effects have just about subsided now 😊

[mrsjsmith]

Dizzie,

Sorry you are having these problems as many of us do. I am the only CLL patient in a large London practice so I do understand GP’s hesitancy, and I wonder how many know we can’t have a live vaccine.

I asked my consultant to write to my GP with all the vaccines I needed. Suggest you try again and make sure that letter is on your notes so the practice nurse won’t suck her cheeks in and refuse to give you a vaccine.

Colette

[Dyzzie22 in reply to mrsjsmith]

I’ll keep trying one way or another Colette. 😊

[New-bee-cell]

That is frustrating. Maybe ask specialist to send “recommendation of vaccination schedule for CLL patients” to your GP. That way the specialist doesn’t have to administer the vaccines and the GP will feel reassured (ethically? Medico-legally?) that he/she has the go-ahead from the specialist?Good luck!🙂