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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

77 replies

Worrysaboutalot · 27/01/2021 16:17

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.

OP posts:
sosotired1 · 27/01/2021 16:26

I am really sorry to hear this and am in a similar but much less urgent situation (I have a respiratory illness and two different chronic neuro conditions and believe I should be CV so in group 6, however, I have not been reviewed for years and notice I fell off the free flu jab lists so had it privately).

Firstly don't worry about taking up their time, at all, it is incredibly important for you to resolve this to protect your family from an unneeded lose of a mother.

I would ring the surgery again and ask for a second review. I would ask the to confirm that you are in Group 4 as per your neurologists instructions (because you had the shielding letter). I would ask that they put this in writing, even if in email just to make sure there is no slip up.

If they still refuse, ring your neuro's department/secretary and ask what to do. Do you need a referral so they can feed back to the GP that you are indeed currently ECV? Would they just be prepared to write a letter and urgently? In which case ask for a copy.

Check that your GP receives this and acts upon it, again ask for written confirmation.

Follow up all calls in writing, even if just a quick email so it is documented.

This was the advice of a GP friend by the way.

Cabinfever10 · 27/01/2021 16:27

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

poopyface · 27/01/2021 16:29

Yes the hospital should have copied your prognosis and treatment to the GP? Can you speak to the practice manager and check that hasn’t happened and then get in touch with your consultant.

poopyface · 27/01/2021 16:30

*diagnosis !

Lalapurple · 27/01/2021 16:31

Don't feel guilty about taking up their time - do the medical review or phone again and ask to speak to a doctor about it.

Original poster
Worrysaboutalot · 27/01/2021 16:32

Thank you sosotired1

I will take your words with me, for my medical review next week.
Plus confirm everything in writing.

OP posts:
Original poster
Worrysaboutalot · 27/01/2021 16:34

@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
Yes, my consultant sent diagnosis and medication list to my GP early August. The receptionists confirmed they had this letter, which was CC'd to me too.

Yet I haven't been tagged on the medical system. Which means when they look for immune supressed people, I won't be on it :(

OP posts:
NewCatMummy · 27/01/2021 16:35

If you take mycophenolate and 5mg or more of prednisolone you’re ECV. As above the consultant should have written to your gp. There is a government website where you can register yourself as ECV with your nhs number so that might be worth a try.

Seoirnbru · 27/01/2021 16:36

In our practice this would be the practice manager who deals with this- if she's not sure then she'll check with one of the doctors (obviously all practices are different)
Maybe see if you can speak to the practice manager before your booked appointment? I would definitely agree you should be on the shielding list, but it sounds like you've fallen between the cracks between secondary care and GP. Also as PP said your myophenololate should be being added to your medication lists as an 'outside issue' so interaction can flag up - but the steroid dose / CPAP for this indication etc should have you on the CEV list anyway.

Original poster
Worrysaboutalot · 27/01/2021 16:38

I will be trying to get in touch with my consultant but he is a very busy man and I don't want to bother him to repeat what the GP already has in letter form from the consultant.

Plus any letter from the consultant to the GP takes weeks to arrive and if the GP says I am entitled I am hoping to get a vaccine next week!
I next see my consultant mid February and if this isn't sorted by then, I will ask my consultants advice on what to do. I will take my GP's email address if the consultant might ask his secretary to email something as a one off.

OP posts:
Original poster
Worrysaboutalot · 27/01/2021 16:40

@NewCatMummy

If you take mycophenolate and 5mg or more of prednisolone you’re ECV. As above the consultant should have written to your gp. There is a government website where you can register yourself as ECV with your nhs number so that might be worth a try.
Is this written anywhere, that I can screen shot and send to my GP ?

I registered myself on the government website in July 2020, hoping to get priority on the supermarket shops, but I never heard back from them.

OP posts:
Randomrebel · 27/01/2021 16:41

Its your consultants fault can you find his email address by googling his name on the hospital website or contacting his secretary.

You have made me worried now. I was missed off the first list and have blood cancer although in remission its something that I will always be monitored for.

I now receive the CEV letters but it took me from March to June to convince my GP practice that I should be on the list.

Original poster
Worrysaboutalot · 27/01/2021 16:42

@Seoirnbru

In our practice this would be the practice manager who deals with this- if she's not sure then she'll check with one of the doctors (obviously all practices are different) Maybe see if you can speak to the practice manager before your booked appointment? I would definitely agree you should be on the shielding list, but it sounds like you've fallen between the cracks between secondary care and GP. Also as PP said your myophenololate should be being added to your medication lists as an 'outside issue' so interaction can flag up - but the steroid dose / CPAP for this indication etc should have you on the CEV list anyway.
I was thinking about talking to the practice manager if I got nowhere with the doctor.

I am wondering whether to contact her sooner, like you suggested.

I am just torn, I hate making a fuss but nothing will be dealt with if I don't make myself a bother.

OP posts:
WeeDangerousSpike · 27/01/2021 16:46

Your consultant can register you as CEV, it doesn't have to be the GP. I'd phone the consultant's secretary, or any specialist nursing team the hospital have for your medical condition.

Original poster
Worrysaboutalot · 27/01/2021 16:49

Randomrebel Hope you stay in remission. My dad has blood cancer but luckily his numbers are low enough that they monitor him without treatment, also because of his age :(

The consultant has clearly send many letters to my GP giving my diagnosis and mentioning the meds they give and what the GP has to do.

The GP's must have read the consultant letters, as the GP ordered extra tests because of these letters and I get an extra vaccine (Pneumovax) on top of the yearly Flu jab. As I won't be able to fight off chest infections or cope with fevers.
Not that I would know I had a fever, I can't sense temperature anymore, lol :)

OP posts:
sosotired1 · 27/01/2021 16:49

This has been very helpful for me too. Do any of the other posters know if there a government website where you can register you are CV?

Zoomies06 · 27/01/2021 16:51

I am ecv because I have severe asthma. I had four doses of steroids last year so that put me on the shielding list for this year. I wasn't last year but it is the last few months my asthma has got worse so I have now been referred. So if you are on daily steroids surely you should be on the ecv list. I am shielding from work because I don't want to catch it because I know there is an extremly high chance it will hospitalise me and the same I want to be here for my children. Ring back your gp you have a right to be kept safe .I had the ecv shielding letter and one off my gp so they should be able to add you to it.

Original poster
Worrysaboutalot · 27/01/2021 16:56

@WeeDangerousSpike

Your consultant can register you as CEV, it doesn't have to be the GP. I'd phone the consultant's secretary, or any specialist nursing team the hospital have for your medical condition.
I have trouble getting in touch with my consultant and won't see him until mid February. But I will be chasing him if I get nowhere at my local surgery.

However my GP surgery is currently doing the vaccinations for this area of our town. So even if my consultant tagged me as ECV, I will still have to deal with my surgery who have already printed their priority lists for the local area. In order for their reception team to ring each person and offer them a vaccination slot. I am not on their printed lists so I will need to be added in pen to the top of a sheet by the surgery.

Don't ask me why they printed it all out, that is the way they are doing it. Guess so they can spilt the task of making the phone calls to several office staff.

OP posts:
Original poster
Worrysaboutalot · 27/01/2021 16:58

@sosotired1

This has been very helpful for me too. Do any of the other posters know if there a government website where you can register you are CV?
Their was a government website to be registered CV but it closed in July 2020. As I registered just a few days before it closed.
OP posts:
Orangeblossom1977 · 27/01/2021 17:00

Hi OP my DH is on immune suppressants and CEV - this is the site where you can register -

www.gov.uk/coronavirus-shielding-support

Also for DHs condition there was a grid with certain combinations meaning CEV - such as yours....I will try and check for you and see if I can find anything for your condition.

Orangeblossom1977 · 27/01/2021 17:01

Tried the site above and it still seems to work?

Wigglegiggle0520 · 27/01/2021 17:02

Flowers OP this must be so stressful for you.

No advice but just wanted to say don’t feel guilty for taking up any slots. You need to get this sorted ASAP so do whatever you’re advised

VaTeLaverLesMains · 27/01/2021 17:05

I'm on very similar meds and ecv. Def needs communication from hospital. Don't be apologetic OP, you have to be an assertive warrior when you have a rare disease.

Think of it this way, if you are sorted you may save a bed for someone else?

Davros · 27/01/2021 17:06

I was ready to say that you can't really be CEV but you certainly are and should be recorded as such. I have a long term autoimmune disease which affected my lungs, taken steroids for years etc. I'm having the vaccine this Thursday. Most potential queue jumpers want to do just that. You are not one of them. Good luck