Does having coeliac disease put you into group 6?

[MyBossIsATwat]

About 1/3 of people who have coeliac disease have reduced spleen function but most coeliacs don’t know if they do or don’t as it’s not routinely tested.

On the gov website it says ‘a problem with your spleen, example sickle cell disease, or you have had your spleen removed’ would put you into group 6, but does anyone have access to more information to know if they’re including coeliacs in this or not?

Thanks.

Hello,

I am surprised by your experience Lalallama I booked via NHS and did not show proof and there was no problem at all.

I did not need to show anything. I was not doubted.

I can't see how they could ask people to show additional information as that is not clear via booking system.

It feels so wonderful to have the first shot.

Massive Thanks to you all,
@WombatChocolate and all on this thread.

Dd is back from her vaccination. No proof asked for. Just her booking reference.

Yes I did need to show booking reference! From my phone!

I certainly didn't need to prove that I have health conditions.

LLAmma, I assume you were at a mass centre (via national booking system) and not at a local GP led centre.

How odd. People with coeliac don't usually have any proof of the condition, and people shouldn't have to prove any medical conditions, only that they were carers or in social care work,nif booking under those criteria.

Were they asking everyone who turned up for 'evidence' of medical condition or age? As others said, the fact the system allowed you to book means you were eligible. It wasn't up to the vaccine centre to check that in terms of medical conditions, unless you ticked on the booking form to say you were a carer or one of the other things that did say evidence was needed.

You do t seem to have had a smooth path through any of this, which is such a shame. But I'm glad you've had the jab.

LLAma, I wonder if you're still not flagged properly as Coeliac and as Group 6. If I've read back properly over what you said previously, you didn't have the endoscopy and weren't sure if you were registered as Group 6 and then suddenly one day found the system let you through, so you assumed you were.

I just wonder if there's a chance you aren't registered as Group 6 and in booking you somehow ticked a box that lets people through without beingGroup 6 medical, but as a carer or social care worker or whatever, and that is what they wanted evidence of and expected (normal to ask for that evidence) and couldn't see you flagged as Group 6, but let you through as booked and your description of your condition. That's the only thing I can think of.

Next time you speak with a doctor, do ask if you've been formally diagnosed with coeliac and your notes show you as Group 6. It might come to light that you haven't been.

Anyway, it won't matter for 2nd jab as you'll be called automatically after first or actually probably already have it booked if you booked via national system.

All very odd.

When I got mine a couple of weeks ago I was questioned as to why I was there, despite not being warned I'd need proof of my condition. They decided to assume I was a healthcare worker, then a carer and got funny with me for being there when I said no to both. I thankfully had proof with me, well an appointment letter from my consultant at least which when I went to show them they suddenly didn't want to see.

The other person in the room - another woman about my age - wasn't asked why they were there though, so I don't know if it is specific to certain practitioners or they made a judgement on mine or the other ladies appearance.

There's so many things in group 6 though that won't be visible so I really don't get it.

Really glad everyone has a smooth experience of the first vaccination. @WombatChocolate I definitely didn't tick that I was a carer or social worker. What I think happened is when it was in the news that they're now moving onto group 6 I went onto the NHS site and at that point it said you could only book if you were over 60. So I emailed my GP and asked if I should wait for them to contact me or whether I will be able to book online. That was when they said I needed to wait for my age group. Then after reading this thread I went onto the NHS site and found I could book.

It was a mass vaccination centre and she asked for my doctors letter, which of course I didn't have.

I do worry about my GP surgery as back last summer when I noticed that they'd added 'moderate risk' to my notes I emailed to ask why (as I didn't realise coeliac was relevant at that point) and they said it was because I'd had cancer in the past (10 years ago, treated with surgery, no chemo). Me and DD (coeliac) get offered the flu jab each year though so they must have some idea. Who knows! Feel relieved to have had the vaccine though.

Cross posted @OhLookHeKickedTheBall sorry you didn't have quite such a smooth experience!

You do wonder don’t you, if the people at the centres are kept up to date with who can currently book, and what the website says (or doesn’t say) about the need to bring evidence.

It really isn’t reasonable to ask for it when there’s been no mention of needing any, plus most people just don’t actually have any evidence on paper anyway.

You’re done.....that’s the main thing isn’t it. Let’s hope almost all of Group 6 are done and anyone who has been missed off the list can get it rectified, especially if they are very young.

Just to add, the vaccinater who asked for my proof was really lovely about it and kept reassuring me that I'd done nothing wrong, just that they had to have a doctors letter.

Lala, glad they were nice about it. The thing is, you didn’t know you needed a letter and nowhere on the national booking site which is saying anyone who is CV can book there, should take evidence with them to their appointment. There’s a mis-match of communication. Your jabber might have been friendly, but others might be officious about it or even turn people away. It suggests the move from just using GP led services to letting Group 6 also use the national system hasn’t really been smooth, which is a shame.

People are so keen not to queue jump and to do it all properly, that they are easily thrown. And to to be honest, reports like this put people off using the national booking system before they have a letter inviting them for vaccine which they can use as evidence......and that means lots of people will wait a further 10 days before booking, which slows it all down.

Anyone else with young coeliacs having trouble getting them vaccinated?

I’m CEV with multiple problems including coeliac disease, brittle asthma and a subclass immunodeficiency that reduces my ability to make any antibodies

DD 18 also coeliac qualified for vaccination due to mental health issues and had a letter this week to book from our local psychiatric team

I tried to book and then contacted the gp as the system wasn’t letting me book for her, at the same time I asked why DS 17 hadn’t been contacted yet as a coeliac

I’ve just been texted by the surgery, contacted them and the lady coordinating had literally texted and left

The receptionist treated me as if I were a queue jumper! Dd isn’t eligible only people with SERIOUS mental health issues, except she had a letter because she does have serious issues

Apparently coeliac children aren’t really affected! Great but he’s essentially an adult at 17.5 and all the research agrees

Not only that but the latest update states that families of immunocompromised people are supposed to be vaccinated and they were written to 10 years ago by the regional brittle asthma clinic and told DS must be vaccinated against flu etc to protect me

This is a beacon practice surgery but always do the minimum they can get away with

They’ve demanded sight of DD’s letter before they will help book any vaccination and weren’t happy when I said I wanted to discuss this with the person on Monday

This has really increased the stress in our house unnecessarily, I’ve a house full of anxious aspies who’ve had a hard year

I guess I just wanted to see if any other younger coeliacs have been challenged about their access to vaccination