To expect my GP to tell me which level of priority I am for Covid Vaccine

[Worrysaboutalot]

I have a rare neurology condition and the treatment includes steroids and immune suppression pills.

In July 2020 I was also given a photocopy of the rules for Extremely Clinically Vulnerable by the steroid clinic back in July in the hospital by a doctor. This letter did not have my name on it, I was told I was ECV and to follow these rules. But I never received any ECV letters from the government, so I clearly haven't been registered as ECV anywhere else.

At the time I was on weekly iv's for steroids and on daily immune suppression tablets.

I now take 15mg Prednisone (oral steroids) and 2000mg of Mycophenolate mofetil (immune suppressant) daily.

I spoke to the doctor receptionist last week and my records had no mention of the Mycophenolate mofetil as I get that direct from the hospital that my consultant works from. Nor the fact that I was immune supressed from this medicine.

Neither did my records say I had a neurology condition (Dorsal Root Ganglionopathy.

Therefore I am not flagged as either ECV or just vulnerable in terms of the Covid vaccination at the GP's

Yet the NHS sites say if you have a neurological condition OR currently having immune suppression therapy you should be classed as ECV.

The GP receptionist asked me to send proof of the ECV letter and proof of the Mycophenolate mofetil prescription which I did. A doctor reviewed it and I am still neither ECV (Level 4) nor vulnerable (Level 6)

When I would of thought using a CPAP machine at night, being overweight, long term steroid use would of put me on Level 6 even if they ignore the neurological condition and immune suppression.

I rang back a week later (this morning) and the receptionist told me I am still not tagged on the medical system as being immune supressed or having an neurological condition on their system, nor do the doctors know about the Mycophenolate mofetil drug that the hospital give me.

She suggested I have a medical review and ask the doctors who will call me next week about my issues :(

I feel terrible taking up a slot at this time, but they are booking ECV people this week at my surgery and I don't want to fall down the cracks. Especially as my kids will be back in school 8th March onward (maybe) and both schools have had several cases of Covid and it is only a matter of time before I get it and without this vaccine, I am likely to die. As a chronically ill 40 odd yo in a wheelchair who needs CPAP to breath at night, I will not be prioritised at hospital. I am not young and healthy. But my family love me and I want to stay here with my husband and watch my kids grow up.

AIBU expecting the GP to tag my record correctly and assign me to either the level 4 or 6 group. As my layman reading of the NHS website implies I should be in ?

Could I ask to be tagged as being immune supressed and as having an long term neurological condition on my medical record, or is that purely up to the doctors to decide if that is necessary?

What do I do if the doctor leaves me untagged and with no level next week ?

PS. I have several other health conditions but they are not under the NHS website ECV and V lists, so I ignored them for the purpose of this post.

Thank you Orange Blossom
Very useful links
Under this link
^5. People on immunosuppressive therapies sufficient to significantly increase risk of infection. The relevant immunosuppressive therapies are
listed here: digital.nhs.uk/coronavirus/shielded-patient-list/methodology/annexes#annex-f-bnf-8-2-drugs-affecting-the-immuneresponse- (Annex F).^

and that link has my medicine second on the list.

I am feeling more confident that I should be level 4 (rather than 6) now

We are vaccinating our ECV patients in house, then we know they aren’t getting missed. Does your hospital do vaccinations? It might be worth emailing or phoning the neuro department to find out. If you are seen in an outreach clinic in your local hospital, contact the tertiary hospital the neuro department is based at.

Don’t worry about bothering the staff, preparing the list of patients to be vaccinated is one of our biggest projects at the minute so we have a specific team to coordinate it. I’m sure most tertiary hospitals are the same.

I'd bring back because this might be a coding error and resolved quite quickly. If the code for your condition that's been used isn't one of the ones being searched for - that could be why you aren't coming up. It might be an error with the code entry or an error with the search. So either ring back and ask them to check your condition and medication are both listed on your summary as per the letters (give the date here) and if you are told they are, ask if it's possible for someone to check the code to if the right one is being used as you have been assured that by the consultant that the condition should change your priority group. It's usually something in the background that's causing this sort of error so you need to talk to whoever deals with it. Practice Manager is a good place to start.

Please don't think twice about taking up surgery time. You are saving time and resources by sorting this out. Getting ill would cost the NHS a lot more.
Can I suggest you also tell the surgery that you'd like to be on the reserve list for unused vaccines each afternoon this week? On the assumption you can get to the surgery at short notice. I really hope you get the vaccine this week. 💐

I can't get to surgery quickly, as the neuro condition left me in a chair, so I can't drive atm.

However I could ask my husband to drop me off at lunchtime and I could sit in my chair in the GP car park. I don't feel the cold, so it wouldn't bother me.

It would be worth it!

You have had lots of very good advice, OP, so I am only going to add a very kind but firm shake. Please stop apologising and feeling guilty. This matters. You matter. Please don’t think twice about calling the practice manager tomorrow and politely but firmly insisting that this is resolved

It is up to the hospital team to tell your GP to do the admin that puts you onto the shielding list

You need to get on to your consultant's secretary asap (or other admin clerk, or specialist nurse) and get them to either out you in the list themselves (I'm not sure if they can do this) or write to your GP explaining that it must be done and that it is correctly the GP's admin.

You're not the first person I've come across where a hospital team has given advice in a half-assed way, and I suppose some mistakes were bound to happen with a new system when everyone was still learning what needed to be done.

It's important for things like getting supermarket slots and pharmacy deliveries, plus advice from national and council hubs

Right.

1. My first plan is talk to practice manager tomorrow and see if I get anywhere regarding, tags on my records and ECV list.

Secondly ask about reserve vaccines and how I would be happy to wait in the car park and they can fetch me in at the first no show. Or wait to the end of the day and see if they have any spare.

1. Contact hospital and ask if I am on there lists/could I be.
2. Talk to GP at surgery next week and get their opinion on tags/ECV list.
3. Contact Consultant's secretary and see if consultant can help.

I will let you know if you get anywhere.
I registered for a second time in that NHS link a few posts back, let's see if that helps too.

Thank you to everyone who took time to answer, I appreciate you

advice ring hospital explain situation to the telephone operator why you need to speak to consultants secretary or can they give you her email address (she may be wfh) & her phone number
(nb always make friends with consultants secretaries I have learnt that over the years!)
You need this information op asap do not feel guilty

mumwon YY, to befriending secretary as soon as I can locate her :)
I am thinking the PALS lady helped me when I needed to attend appointments. I bet she could locate an up to date consultant secretary details.

As others have said, you absolutely should be on the list and should not feel guilty about taking time to get it sorted.

But I just wanted to say, for your own peace of mind, that even a 90 year old, morbidly obese, diabetic heart-transplant recipient still stands an 85% chance of survival if they catch it, so please don’t assume it’s an automatic death sentence even if you did catch it

Thank you LastStarFighter You are so right, I still have a good chance of survival even if I catch it before vaccination. I need to look at the bright side and maybe having a cpap at home, might help me overcome some of the breathing difficulties.

It's worth checking with your hospital/consultant. A friend of mine who lives past Wembley has been called to Guy's for hers as that's where her consultant is

I hope you get this resolved. Don't you have copies of the letters from the consultant to your GP? They should be sent to you too.

If your GO says no. Ask them to document their reason for refusal in your notes and explain it to you.

Sorry GP not GO!

The meds list is here for shielding which makes you cat 6

www.vasculitis.org.uk/covid-19-shielding-strict-or-normal-social-distancing

Hi OP. I am a GP. You definitely qualify for ECV/shielding/group 4 vaccination. It is clearly laid out in the British Society of Rheumatology guidelines (I know for you it’s a neuro issue rather than rheum issue but the medications are the same) - see www.rheumatology.org.uk/Portals/0/Documents/Rheumatology_advice_coronavirus_immunosuppressed_patients_220320.pdf?ver=2020-03-23-165636-767

I can see exactly what’s happened here. You have a fairly rare condition that there may be no official “code” for on the records, and you get your MMF from the hospital not your GP and not all systems have an option to add this medication if not prescribing it, sometimes there is just a little note or flag saying to remember you’re also onthis from the hospital. So the GP records search won’t automatically bring you up. The truth is that your specialists had the responsibility of identifying you for shielding and it sounds like they did that but never sent out the official shielding letter which is what informs your GP that you are in that group.

I do not think you will have any difficulty persuading your GP that you have slipped through the cracks and need to be added to the shielding list which will make your priority for vaccination. You just need to tell them, but if they do need persuading show them that document from the BSR website which spells it out very clearly that MMF plus daily oral prednisolone puts you in this group.

If for some reason that doesn’t persuade them then call your consultant and make them contact your GP urgently. You should definitely be category 4 and if they are vaccinating that group now locally you need to be on that list. Don’t worry about being added on in pen, it really won’t be a big deal once your GP has agreed you ought to be on the list. Hope it goes smoothly for you tomorrow and don’t worry about taking up time, it is important for you that this is sorted out ASAP.

PS cavemums is wrong, you are category 4! Even with the document she links to... Maybe she meant 4!

Once your GP realises you are ECV and have slipped through the net it’s easily sorted, we just have to add a code to your records that says at high risk of a severe clinical course of COVID and add you to the vaccination list, you can also get sent out an official shielding letter from the GP if you needed one at this point!

Yes I'm sorry I meant 4

I have been having similar problems regarding my DH who has a rare neurological condition and lots of other conditions on top of it. He received a letter from the Neurology hospital last April telling him he was extremely vulnerable and telling him to shield. He never got any of the government letters or texts. I registered on the previously mentioned link for support for shielded people but nothing happened and he never received the vitamin D tablets that I applied for on his behalf. Mine arrived a week ago ( I am also CEV so know what letters etc he should have been getting)

He has obviously been left off the government list but I can't find a way of verifying this. After about a week of trying I managed to get hold of the neurology secretary last week who confirmed that he was still extremely vulnerable but I was told that the hospital doctors didn't add people to the list. They had forwarded the letter to his GP. The GPs receptionist then told me that the GPs don't add people to the list. If this is correct, who on earth does it? I have finally got the GP to move him to category 4 for the vaccine but I still can't get the problem with the list resolved. Does anyone know who is responsible for doing this?