Coeliac and not called for vaccine

[MyBabyBoyBlue]

Hi all, I've been waiting for months to be called for my vaccine (having read that coeliacs are in group 6) and having seenAl my coeliac relatives and acquaintances called back in Feb/March.
In the end, I managed to ask my GP during another appointment and she said it seemed that my trust has decided not to call coeliacs as part of group 6. I didn't realise it was an optional thing and that my eligibility would basically depend on my postcode rather than my underlying condition. Has anyone else experienced this?

No, my nephew has celiac and has had his first, he's 16. Have you called 119? (Sorry if you have) but, you should have had your first vaccine now. I was initially in group 6, asthma, but it all changed and I had my first last week (40's)

There was once several threads about ceoliacs and jabs and these included links to a green paper that specifically said ceoliacs to be included. Before this green paper the NHS guidelines implied it was optional. If you look at the ceoliac society webpage they have advice that says to speak to your doctor. I managed to combine my coeliacs with another disorder not listed in the green paper and my doctor agreed to put me in group 6. They are now vaccinating over 42 year olds.

green book sorry rather than green paper here is the link pg 13
The guidance used to be something like maybe ceoliac disease but this green book changed everything with this:
Asplenia or
dysfunction of the
spleen
This also includes conditions that may lead to splenic dysfunction, such as
homozygous sickle cell disease, thalassemia major and coeliac syndrome
www.gov.uk/government/publications/covid-19-the-green-book-chapter-14a

Thank you - yes, I mentioned the green book to my GP who just flatly said sorry they're not doing it. I'll try 119 again!! Such a headache...and it worries me for boosters going forward that I won't be eligible in the future when I should be.

Looking at the Ceoliac UK webpage, if I understand it correctly, they are saying ceoliacs with impaired spleen function are prioritised for the vaccine. My husband is ceoliac, no spleen problems, and got called with his age group.

I guess this could vary by health authority though.

They do not routinely test for spleen function. My understanding is that coeliacs are to be vaccinated as they are assuming there will be impaired spleen function. My daughter is 12 so not eligible yet but it’s something I’ve been watching closely.

The NHS England advice to GPs when Group 6 was a focus was very clear that GPs should be rigorous in looking at the Green Book and ensuring no-one was left behind or missed out for the jab, to ensure health inequalities did not grow.

It was very clear.

All the letters from NHS England to GPs are on their website under Primary Care guidance. It will be around February time.

I would write (email) the GP surgery, stating the letter is for the attention of named GP. If you write they will be required to reply. They aren’t so keen to out things which might be questionable in writing.

• state you spoke to them and are concerned about the answer you received in light of the information given by Coelaic UK and also the JCVI and NHS England and in the Green Book, which states that anyone with risk of spleen disjunction should be prioritised, including those with coeliac syndrome.

Ask them to look again at the NHS England advice to GPs from February which asks them to be careful to ensure all those listed in the Green Book are included as Group 6. And ask if they still don’t want to include Coeliacs where you can pursue the matter further.

Before you do this, one key question - are you formally diagnosed as coeliac via biopsy/endoscopy? Some people have never had these tests so don’t have the formal diagnosis and this resulted in some nit being labelled as Group 6.

Please do follow it up in writing, as it really isn’t good enough for GPs to decide they just won’t include a group which are clearly listed. It wasn’t optional who to include. And as you say, if you don’t get included now, you might be excluded from booster shots etc if Group 6 end up being included in those lists. Even if your jab by age is pretty imminent, I would still pursue this and ask to be flagged as group6 on your records, because this is likely to be an issue in future and it’s not just about the jab now.

I booked via the NHS website no problem at all x

www.england.nhs.uk/coronavirus/publication/next-steps-on-the-vaccination-programme-vaccinating-cohort-

This is the link to the NHS letter to GPs which clearly tells them to ensure everyone listed is included in Group 6. Coeliacs are mentioned at the end.

In order to book on NHS site/119 as Group 6, the GP has to have flagged you as Group 6. The problem could well continue as you try to book here as the GP simply hasn’t flagged you.

Sorry, link to wrong letter.

This is the right one.

www.england.nhs.uk/coronavirus/publication/vaccination-of-jcvi-cohorts-5-6-and-additional-funding-for-vaccination-in-residential-settings/

Thank you all for your advice, I'll be following up with my GP again!

DD was able to book direct through NHS website. Have you tried just booking it online? If it says at the end of the process that you're ineligible, then get back to your GP.