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.

Holy shit I’ve never seen anyone on this site using the mycophenolate same as me. Yes you group 4 hun same as me. I’m getting my vaccine in the next 4 weeks so you should get a call or text soon

@cavemums

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

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

You are wrong there. Op is on immunosuppressants which means she is classed as group 4 not 6. I am on the same ones for a different conditions and I’ve been told it’s category 4 for that medication.

Hi OP, as @Iceskatingfan has suggested you may have, I too have 'slipped through the cracks' and missed being recorded as CEV due to suffering from a combination of conditions which makes me vulnerable, rather than being a straightforward case of "I have X disease" or "I take X medication".

I have to have my blood tested weekly at my surgery - and it's often done by my own GP. A few weeks ago, I mentioned the vaccine and she checked my record to see if I had been marked as CEV (I have never received a shielding letter, but was told back in March by my GP that I should be, so have been). I was not marked as CEV and she said she would resolve the issue.

I received a phone call on Saturday evening from a different GP's surgery in my city, to say that they had been vaccinating the over 80's all day and had a few doses left over, so they had contacted my surgery and asked if they had anyone who would benefit from receiving one ASAP. I think, partly because I see her so often and also the fact that we had so recently discussed how dangerous Covid could be for me, my GP gave them my name. Just 30 minutes later, I had received the first dose of my vaccine!

I would definitely go ahead with the telephone review you have booked - lots of very knowledgeable PPs on this thread appear convinced you should be on the CEV list and my understanding of the rules leads me to agree. Having a conversation with someone now could very well leave your name in the front of their mind if a situation like the one I encountered on Saturday happens - good luck!

If you call your GP practice ask to speak to the summariser/readcoder. Or ask reception to send them a message asking them to update your records with your diagnosis. Were you asked to shield in the first lockdown? If so you should have a high risk code on your records which will cover you. This is so frustrating! I wish I could help you. I have been spending hours checking patients records making sure they are accurate so patients get called in the correct group. I'm pleased to say nothing has been found to be missing yet but patients want reassurance. Do you have medical record access online? If you do you will be able to see what codes are on your records. I really hope it gets sorted out for you. If you don't get anywhere contact PALS. Don't feel bad about it.

@msbevvy data was extracted from both primary and secondary care for shielding and if your husband's consultant has confirmed he is CEV then he should have received a letter. The GP practice can also code him as high risk on the advice of his consultant. Lots of conditions aren't classed as high risk regarding covid so if his condition isn't in the criteria then it's down to the consultant to advise the GP of his risk. It's definitely down to your GP practice to record the risk group. Again, so frustrating to hear people being bounced back and forth without getting answers! Ask for your message to go to the practice summariser/readcoder.

Still in a phone queue trying to get through to my doctors to speak to the practice manager.

But I also found the following information since last night.

Data for the ECV lists were extracted from the NHS systems on 16th May 2020, when I didn't get a diagnosed or treatment until July 2020.

Plus the medicine data didn't include any prescriptions given by hospitals(see this link), which is how I get my Mycophenolate Mofetil via the hospital.

This is the Clinical Inclusion Criteria I fall under 4 "All patients prescribed immunosuppression therapy in the last 6 months and NOT triggering in other disease categories"

Link which proves that GP practices can add or delete people from the ECV lists from 7th October 2020 onwards and the codes needed to do so. High risk code is 1300 561 000 000 107 if anyone needs it and doesn't want to read the link.

I got though to the GP's whilst typing on my laptop. Multi-tasking here. Nice receptionist is going to ask the practice manager to ring me.

Everyone keep your fingers crossed. I prefer to speak to the practice manager rather than the doctor on Monday.

nonameslob Because of your post I did ask to speak to the summariser/readcoder person first but he is not back until Tuesday. So it will be practice manager if I can get hold of her or doctors next week.

[quote Nonameslob]@msbevvy data was extracted from both primary and secondary care for shielding and if your husband's consultant has confirmed he is CEV then he should have received a letter. The GP practice can also code him as high risk on the advice of his consultant. Lots of conditions aren't classed as high risk regarding covid so if his condition isn't in the criteria then it's down to the consultant to advise the GP of his risk. It's definitely down to your GP practice to record the risk group. Again, so frustrating to hear people being bounced back and forth without getting answers! Ask for your message to go to the practice summariser/readcoder.[/quote]
Thanks for that. He got a letter but from the hospital only. He never got the government one.

I got one from the GPs and then all the government stuff.
I will try again with the GP surgery and ask for the summariser. It is so difficult when the receptionist is adamant that they have nothing to do with adding people to the list.

@msbevvy

Follow my link digital.nhs.uk/coronavirus/shielded-patient-list/methodology/additions-and-subtractions GP's can update ECV status since 7th October 2020

Heard back from the GP's lovely receptionist, she gave the details to the duty doctor who did something, not sure what.

But I have been given a vaccination date of next week! Hurrah, glad that I don't have to worry about not being on the list anymore.

I do still need to check that all the relevant tags are now on my GP record but I will chase this up after all the first vaccines have been done after July 2021.

I am really surprised. I was expecting to get put in the right list (level 4 or 6) now and get a relevant vaccine date later on.

However I am very grateful, I can't tell you how much.

I have had a terrible year health wise last year and although people frequently say that I come across as a positive person despite my health issues, I have had a high level of anxiety about Covid.

Hopefully after my vaccination I will feel better.

Thank you for all your support. I don't think I would of got this positive result or as quickly without your advice to ring back to speak to practice manager and the links posted.

That is great news! Well done for wading through it and sharing everything.

Well done @Worrysaboutalot.

Glad you managed to get this sorted without having to camp out in the car park for the day risking hypothermia.

Just to say from one immunosuppressed soul to another, the thinking seems to be that while we immunosuppressed are predisposed to catching all and sundry, with Covid, our immunosuppression affords us some protection against the immune system going nuts trying to fight off the illness - and it seems to be the immune system going nuts that causes a lot of the damage.

That’s a great result OP.

Yes you should chase it, seems this situation is having the knock on effect of showing gaps in medical records.

My dp has COPD and Ds has lung issues as well. Neither received shielding letters.
This wasn't a massive issue at first because ds was off like everyone else from school between March and September, and dp is an adult (allegedly) so can pretty much keep himself safe and at home.
I did apply on the government website for both to be included around May as at the time there was discussion of kids going back to school. But both were declined. I was told our GP surgery had said they weren't to their knowledge vulnerable. School stayed shut so I didn't persue it.
It became an issue in September though as school said it put them at a difficult point because the LEA would only allow those who were on the shielding list to stay learning at home, so he had to go back or lose his place. The places here are hard to get so didn't want to risk that but that was what the lea were doing.
So I pursued it again and gp didn't have any of his letters from the many hospital consultants we have seen since he was born (12 years ago). They had 7 years out of date medications listed as his current meds. We've been with this surgery for 7 years so they've not kept up records the entire time we've been there
I was then told shielding letters were finished now and would not be given out and his consultant said only children who have recently had a transplant or cancer were vulnerable, although since then (December) a child died, same age as him and same illness.

So, the Vaccine

Looking at the online calculator, I put in DPs age (52) and his illness and it said you should be called in from the first week of February, and no later than mid-February.
SIL has been adamant after the shielding cock up to call them (she is NHS) so I gave in to shut her up more than anything else.
I had to mention the sil or they said they wouldn't disclose (I'm his advocate, he has some other issues meaning I deal with medical stuff).
So, they said he was in group 9 in the roll out. That's basically second from bottom. I asked why due to his COPD, and was told they've got nothing on their screen saying he has copd- he has been diagnosed since joining the surgery and his GP sent him to respiration who confirmed COPD.
So they do cock up
I've now had to email the practice head GP who is arguing with me but I'm adamant that the categories for people of his age and with his illness is next week.
I'm also planning on ditching this surgery as soon as humanly possible when the virus calms down as surgeries aren't taking new cases if you have aGP surgery in the area.

@Tiktokersmiracle : blf.org.uk have a section on their website under Coronavirus, outlining what qualifies someone with SEVERE COPD to be Clinically Extremely Vulnerable.
It may, or may not, help you DP's case.

Just caught up with this. Fantastic outcome. Good for you. I had mine today. It was also well organised and easy and I didn't feel a thing. to you and 💉

@Cabinfever10

Your consultant should have written to your gp about your treatment and diagnosis so that it's on your gp records especially any medication that he prescribed as the gps need this information so that they don't prescribe medication that is contraindicated. Please chase this up with your consultant ASAP

This.

Every time I see my consultant at the hospital she writes to me and my GP, even if there’s no change in my meds. If there is a change in meds, she puts in in the letter and the Gp prescribes it.

I don’t see how or why you are getting repeat prescriptions from your consultant that your Gp doesn't know about. As a PP said, that’s not safe for you AT ALL.

Really glad you got this sorted OP and are getting the vaccine!

Also, I followed your threads last year before and just after you were diagnosed (before I managed to lose the last one). You've had so much to cope with and I just wanted to say (I know it sounds a bit crap), but hats off to you for dealing with everything. From someone whose DH has a pretty rare neurological issue (much less severe than yours), I know it takes a lot to get through it all (including the unbearable, seemingly infinite admin associated with consultants / GP's and miscommunications!).

Wingedharpy Nice to 'meet' another autoimmune person :)
What you say makes sense. Thank you. That is very reassuring.

Connie My consultant has written to my GP following each of my appointments. Each letter outlines what treatment I am having and the extra medication he prescribes for me. I know as I have the CC copies posted to me. I have no idea why my medication and diagnose have not been tagged on to my medical record.

I pretty much did everything Tiktokersmiracle did for her husband for myself and am exhausted that I will have continue later on, to make sure my medical record is accurate.

OP, your thread has just popped up on active, and I've had a read...
I'm pleased for you that you have an appointment now for your vaccine, but also worried that you feel your consultant is difficult to get hold of.
DC1 is in remission from GPA currently (but sadly almost definitely now has Crohn's disease - that's a story for another day). I found it worked to call the hospital main number and ask to be out through to X's secretary, who I then asked for their name and most importantly, a direct dial number.
It meant that I could call and get information to the consultant. I didn't over-use it, but it was very helpful when we needed help or advice.

twinkletoestwinklenose Thank you for you kind words. I hope your DH condition is well managed and stays that way.

I am lucky that I have a very pleasant professional consultant at the hospital, to be honest I will miss him, when I get discharged back to GP care. Which will likely happen soon, as there is nothing more the hospital can do for me. But his knowledge saved my arms (aka I can still use them) and I am very grateful for that.

mineofuselessinformation Yes, I need to do that. I need to have way of contacting them, in case something is urgent.

Great to hear you got an appointment! Maybe ask your consultant to
copy you into his/her letters so you can keep your own records? Useful if you have something rare/complex, see a lot of different healthcare professionals or have suboptimal GP records.

Well I chased it for DP
They've declined to adds him and are still saying they don't believe he is in teh vulnerable category, despite admitting he was diagnosed with COPD in 2016. In their opinion when first diagnosed it was mild. But that was 5 years ago, meanwhile he has had pleurisy and was rushed to hospital 3 years back as he had coughed so violently he burst a blood vessel in his chest. He managed to shout for me and when I came down there was so much blood it looked like he had been stabbed, I was half asleep and genuinely fell down the last two steps in shock as in my sleepy brain I thought someone had indeed stabbed him.
But despite this, they are going on info they've not updated or a patient they've not offered any further help to in 5 years. I only found out a year ago, by accident that he had been diagnosed. The GP who has emailed and been patronising to boot had never even met him.
I've now complained to the GMC, I've had enough of the ineptitude and rudeness