How do you get NHS notifications for people with a severely weakened immune system?

[Morini]

Hi

I don't get any NHS notifications relating to people with a severely weakened immune system although I am sure that I fall into that category being mid chemotherapy.

This means I didn't get any invite for a 3rd Covid vaccination only for a booster. I did manage to sort it out myself and get it recorded correctly by taking all my hospital paperwork with me. So now I need to try to organise my 4th jab i.e. booster myself somehow.

Also I have had no correspondence regarding the new antobody/antiviral treatments for Covid and have not received a PCR test to keep at home.

I have called 119 regarding this but they don't know anything about this and say it should be generated by my GP. So I have called my GP Surgery and they say that they don't know anything about this and it should be generated by calling 119.

Has anyone else managed to get their records updated and included on the list somehow please?

[Lyndy]

Do you have a local CCG contact for covid jab booking? My one was helpful in the end. Otherwise you could ask your oncologist to help. The fourth (booster) jab requires a GP letter or invite. It was ok for GPS not to know last year but they have had time to get with the programme now, so ask again and be prepared to get awkward with them xx

[Cinderella]

I would recommend speaking to your clinical nurse specialist since there may be a way of registering you as someone with a weakened immune system.

[Davonian]

Morini, I am in exactly the same position so will be interested in the replies. Its been something I've just had to sort for myself as my GP surgery just wasn't knowing or understanding of the programme. Went to local centre for booster and was told I needed a 3rd vaccination as on chemo. Ended up being given 2 boosters. Not sure where I'm at now. 🙄😀

[Morini in reply to Davonian]

Hi, I will do a bit more investigation with my CNS and my Oncologist. I'll let you know how I get on. It's so frustrating, I worry I will miss something to keep as safe as possible if I am relying only on my own research and reading.

[Morini in reply to Davonian]

I have managed to get 119 to send me the PCR pack without me having the letter notifying me that I am eligible. They said they are getting a few queries now and it should be generated from flag on medical records by GP surgery.

My CNS pointed me to GP too. I am now awaiting a call from surgery where I hope to resolve this and get the letter generated for my Covid booster (4th vaccination).

If I have no luck again, I will be contacting my MP to get this progressed.

[Davonian in reply to Morini]

After emailing the practice manager and explaining, yet again, I was booked into the surgery for the 4th vaccination, booster. She said I needed a letter from consultant etc. Then later she said it wasn't required. Maybe they finally read my medical notes. 🙄 👍I had nearly got to the point of giving up before the email but seems my gentle persistence paid off or I was becoming a pain in the a*se. 🙄😀

[win_56]

Your doctor would know you are on chemotherapy and you should be fine on his list as immune supressed patient. I have had my 4th Jab lady week but the letter came from my hospital advising me to get my 4th hab as starting chemo again. I could either book in at the local hospital or the local cricket ground which I booked. I had to take a copy of the letter I received from hospital when I went for my 4th jab. I also had a sriarate letter to state to keep a PCR test at home which I ordered by ringibg 119 as if you do get covid send the positive PCR test off and ring 119 and they will send the anti viral drugs to you which you are eligible for. X

[27-359]

I am in the same situation as you. I am between coming off Rubraca nd starting chemo so rang my surgery to ask about my fourth booster vaccination. I was told that as I was not in active treatment, I was not on their "list" As you say, this also precludes getting the anti viral tablets too.As you are mid chemo, have you tried asking your CNS as you most definitely are eligible.I

Jenny

[Tillymint61]

As I understand it , it is generated by your oncologist writing to your GP. I would check with oncologists secretary to see if they can help.

[Morini]

Thank you for all your replies. I will try my Cancer Nurse Specialist and if not I am seeing my Oncologist next week so I will talk to her about it. I will post an update when I get some clarification.

[Trickysite]

My onc said I could go to any walk in centre and get my 4th jab, which is what I did. First go on to the NHS Covid website and assemble the medical evidence you need to take to the walk in centre. I recall it’s a letter from hospital showing your diagnosis and a carton of your latest chemo or maintenance drug, but check the site.

[Katmal-UK]

hi I had same issue and in the end after several phone calls with GP (who had no idea I even was even a cancer patient) my CNS specialist nurse somehow sorted it at the cancer centre I attend. I now get letters and texts. I’m afraid it appears to be very hit and miss and even the vaccination centre I attended for my third dose hadn’t seen the letter before and that had to be in a hospital setting as I was at risk of an anaphylactic shock.Ihope you get this sorted I know how frustrating this is xx

[Morini in reply to Katmal-UK]

Thank you, it's good to know it's not just me! I feel my GP surgery is unaware of my cancer although I know they get letters from the hospital. I think they must get uploaded but not actually recorded on my notes.

My CNS is my next step and hopefully she can sort this.

[Katmal-UK]

Sounds just like my GP. I also got my MP on the case who spoke with regional NHS. Use all routes open to you, I did and now I’m on ‘the list’. Both my go and cancer centre have text to say that if I test positive then I will get the new antiviral meds.

[bamboo89]

I'm in the same boat, currently on chemo again but not recognised as such officially, its all a mess really. At my last chemo I spoke to the head chemo nurse - she said if I got Covid then to ring 111 (I think) to get either anti viral meds or an antibody infusion arranged, but did not mention having a PCR test at home at the ready. I'm glad you posted though, because I just rang 119, selected the book a test option and told them my situation and she is sending me a PCR to keep at home ready for if I need it. I remain unconvinced that ringing 111 to get the drugs if I need them will work because if I'm not listed as clinically vulnerable or on chemo, they've only got my word for that, not evidence, so whether it would work out or not I don't know. What puzzles me is why only some of us are on this vulnerable register and the rest of us are not, because you're right, they all pass the buck one to another - oncology to the GP, GP to 119, 119 to GP in a kind of closed circle, and nothing gets sorted. I had the same trouble trying to get a booster/third dose in November just before starting chemo, only got it done in the end by making a real nuisance of myself at my GP and even then, the vaccination centre still said I wasn't eligible, so that was another 45 minutes of being steadfastly and noisily insistent and just not leaving. Its all quite exhausting really...

Miriam

[Davonian in reply to bamboo89]

Same here, Miriam after insistence my surgery finally relented. It makes no sense, as the GP gave me the diagnosis in 2016 and knew I would be on chemo. You are so right about being pushed back and forth and we really don't need it with everything else going on. Now to call 119 for the pcr test kit. 🙄😀

[Morini]

Thank you for all your replies. I am still sorting this one out.

I have managed to get 119 to send me the PCR pack without me having the letter notifying me that I am eligible. This solves a short term issue but not the long term issue of not being flagged to receive updates and having to keep on top of things myself.

Everyone, including CNS points me to GP now saying there should be a flag on the system. I am awaiting a call from surgery where I hope to resolve this and get the letter generated for my Covid booster (4th vaccination).

If I have no luck again, I will be contacting my MP to get this progressed.