Any advice welcome please

[panther50]

Can anyone help with some information? I have SLE, Reynaulds and am on low dose steroids. I’ve was put in the wrong vaccine group. The GP agreed and after weeks of trying she had corrected it to group 6. She rang me late on a Fri night to put my mind at rest so I believe her. However after being unable to book, I rang my surgery, only to be told I’m still group 9 on the system. I’m absolutely devastated. Are there any GPs or NHS administrators out there who know what the steps are for the GPs to correct these errors? I’m feeling increasingly stressed and desperate as this leaves me at continued risk as restrictions are lifted.

[Willow1414]

Dear panther 50

I’m so sorry this is happening to you .

Well the very same thing has happened to me , I rang the help line (rheumatology ) she confirmed I should be in group 6 at least , I said can you let my practice doctor now this , she said everyone is calling in about been in the wrong vaccine group .

I said can the rheumatologist send out emails to the doctors practice , she said , the doctor will decide anyway ????

How can this be happening when a practice doctor is not a consultant neither is he qualified enough to classify sufficiently .

The nurse called me back today, after I had left a message . She said I will need to discuss at my face to face this Thursday at the hospital and the professor Emery can email my doctor .

What a nightmare , seems some doctors don’t think SLE and all it’s claws doesn’t hold any weight for an underlying chronic health condition for any priority for the covid vaccine .

I Do wish there were more awareness with this life consuming illness LUPUS...

🦋❤️

[panther50 in reply to Willow1414]

Hi Willow thanks for your reply. I hope your experience is better than mine and maybe this will help you. I spoke to my consultant back in December. She wrote to my GP confirming I should be prioritised. No one read the letter at my surgery & I was told not to contact the GP about it. Got no reply (well actually a template reply which implied I was jumping the. Queue!) from the practice manager so I then booked an appointment myself. The GP was lovely & there was never any question I’d been put in the wrong group. I did feel she was bending over backwards to help, but clearly was struggling to find out how to correct it on the system and I believe when she called me 3 weeks ago she had cracked it. I even tried CCG today they looked up on list and Lupus is there (with no qualifications) if you have lupus and aren’t group 4 you are group 6. However clearly the algorithm hasn’t worked and GPs have had no instructions how to correct, even though they definitely can and some have. It’s just felt like a battle. I’m fairly strong, but this has reduced me to tears. You shouldn’t even need an email from your consultant! I’ll find the government list for you.

[Willow1414 in reply to panther50]

Dear panther50

Thank you for your detailed helpful advice.

Thankfully I have now got my appointment for the covid jab this Thursday , although the doctor said he has no input and it’s all computer generated . So he was still insisting that I am still group 8 due to not been on Azerthioprine 😳🙄😳. He then made me feel that he was doing me a favour and booked me in for this Thursday .

I’m still going to request my consultant face to face appointment Thursday morning , to email practice doctor in regards to lupus priority , in case he lets others suffer the same as me....

I think it’s time that more specialist doctors should be available at GP practices .

I had a serous synovitis foot swelling a couple of years ago , whet to the same practice , they said I must have broken my foot , they would not believe I could have such a swelling without a break , sent me for 2 xrays , of coarse no break .

Eventually got seen at rheumatology for the much needed steroid injection , I now have stuck together tendons in part of my foot , due to Late treatment , and doctor saying I must have broken it 😳.. This is how I first became aware of the amount of acute swelling lupus can cause .. my doctor could not put 2 and 2 together and would not accept that I had not broken it ..

My friend said I should move doctors . But is the grass really greener , or should more knowledge , information and training be needed ..

Even A and E said it must be broken 🤦‍♀️

Hidden illness 😢.. sometimes wish I had diabetes , at least every one knows this one ..

🦋❤️

[panther50 in reply to Willow1414]

Willow I’m really glad you have an appointment. It’s not on, that your GP made you feel like he was doing you a favour. You have a recognised illness you are at greater risk, therefore it is right you have the vaccine. He did have input as he was able to book you in. Also just wrong about group 8 your group 6, if meds’ don’t put you into Group 4. I had a really horrible message from the practice manager tonight, who I hadn’t even contacted. I don’t know what is going on. It’s as if the managers (who have no medical qualifications at all) are making decisions instead of the GPs and consultants.

[Willow1414 in reply to panther50]

Hi panther

Sorry to hear about the practice manager been horrible .

Bless you . Try not to take it to heart .

Easily said then done ..

🦋❤️

[panther50 in reply to Willow1414]

Thanks. It really upset me, been in tears & stressed all night. I hadn’t even contacted her. Got this message “you don’t need to keep contacting us. We will contact you when we have verified how you fit into the group (NB my consultant wrote to them in Dec & GP agrees I’m in wrong group) ........if (!!!) we do manage to sort your coding out it will be several weeks until you are invited.” This was based on limited supply of vaccine to surgery. Which I don’t understand as if they correct my group I will be able to book through universal system not just through surgery. So frustrating! Spoke to GP this morning who was lovely, but couldn’t understand it. She has put moderate risk code in, but this time isn’t correcting the group. Left it with her to sort out.

[Chase888 in reply to panther50]

And all because they stick together.

[stiff19 in reply to Willow1414]

Our go simply told my husband he’d have to wait it’s nothing to do with them 🙈 he has kidney disease and told by letter he was vulnerable. My dad is 86 and only just had his vaccination.🤷‍♀️

[CecilyParsley]

I am so very sorry this happened to you. Me too. I was told by my surgery that only sick and elderly people get the vaccine. It made me angry and frustrated as if no one cared. Then I was told I would have to wait until the obese category. They were taking no account of all my health issues. Do you know anyone in the vaccine centres? They have extra doses available. That is how I got mine. When they checked I was due the end of May on the system now by then I will have had my second one. I am so incredibly grateful. It should not have to be this difficult. I hope that you can get it xxx