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Hi folks, I’m interested if anyone else is experiencing the same frustration in trying to get re-vaccinated. I had both of my Pfizer jabs in January and then April, no side effects. Then I went in to the fantastic QE hospital Birmingham for my autologous stem cell transplant, which has been a success
3 months have passed, I’m rebooted and recovered, time to get my jabs again so that I can resume some kind of social life. No chance. CNS referred me to ring 119. They can’t make an appointment because I’m still “on the system” as being fully vaccinated. Referred to GP who apparently is the only person who can amend or delete NHS records. After a fortnight, the supervisor of my medical practice still “doesn’t know how to do it as she’s never had to do anything like this before.”
So I’m stuck without Covid protection, feeling fully recovered from my SCT but still extremely vulnerable and quite frankly tossed on the back burner because of lack of communication between GPs, two local authorities, hospitals, and red tape. I just want my jabs again, I don’t need a free pizza or $100 bribe. There must be other folks in my position. I’m really, really down.
Hi ironbear62
Glad to hear that your stem cell transplant has been successful but you can do without being messed around by the system.
My suggestion is to contact your MP and ask him/her to get in touch with your Clinical Commissioning Group Chief Exec.
Hope this helps.
David
Thanks David. By sheer coincidence my GP’a practice supervisor has contacted the clinical commissioning group today, who are arranging a “specific request” Covid jab for me in the near future. Turns out that NHS medical records don’t have to be amended or deleted at all. This is just a warning that all may not run smoothly for any other of you good folks out there who find yourselves “never vaccinated” after a SCT and don’t tick any of the usual boxes.
I do know how you feel. It is absolutely ridiculous.
My husband had his stem cell transplant beginning April at the QE Birmingham. All fantastic and now on maintenance programme.
However as you say trying now to get revaccinated is impossible.
GP’s very sympathetic but unable to arrange appointment.
119 shows already vaccinated.
Emailed medical director Shropshire community health who passed my details onto Shropshire Telford and Wrekin covid vaccination service. She was able to arrange an appointment at the Orthopaedic hospital vaccination centre in Oswestry. Luckily he received this last Monday. I really don’t know how we will get on when he needs dose no 4. as it looks like the centres will be closing
What amazes me is that the transplant unit was full when my husband was in and no doubt has been full everyday since.
Don’t you think after what you have all been through this might be less stressful situation. I am so angry about it all and I will be emailing whoever I can. Local MP, CEO National health for England and possibly Sajid Javid. Watch this space.
Glad the transplant has worked and I hope you are able to get your jab soon.
I’m glad he got his jab. If we lived in Birmingham it would have been done automatically. You’re right, the situation is stressful enough without having to battle and jump through hoops just to get another jab. As you say, there must be many more. The clinical commissioning group via your GP appears to be the way to go.
Hi
I’m reading this anxiously as my Husband is due in for SCT at Nottingham City Hospital in next few weeks.
I am going to speak to Consultant, Transplant Team, GP & MP if necessary to ensure he gets his jab in a timely manner afterwards!!
We have a 15yr old son about to start his GCSE yr in September and it concerns me having him in school and his Dad not being vaccinated!!
Many thanks
Jane
Anybody any idea how long to wait after SCT for Covid vaccine based on the advise of the clinical teams of those who have had their SCT
Hi Jane
We were advised it was 3 months post transplant although I presume everyone is different.
I would gather all the information you can while you are still in contact with the City hospital. Hopefully by the time your husband is ready for revaccination this mess will have been sorted out.
Good luck its a tough time but oh so worth it.
Julie
Hi, was reading up on this same thing. Anthony Nolan say your transplant team should be helping arrange the revaccination? link and extract below. Will be meeting transplant team on Tuesday for initial consultation, so will be asking about this.
Thanks for the advice. Unfortunately my transplant team were in a different local area health authority to my home, SCT in Birmingham but back home recovering in Shropshire = confusion!
I think there will be more hassle and confusion for SCT patients in the weeks to come until the whole re-vaccination issue becomes clearer and different local authorities get a grip.
Ah I see. My dads transplant will be up in Oxford, and home is Berkshire so maybe we run into the same issue. Fingers crossed yours is sorted soon, please keep us updated.
Tx.
Hi all.
I have raised this concern with the Shrewsbury consultant today , he wasn’t aware of the problem but will obviously taking this further. However Birmingham vaccination centre called me today to book an appointment. I am glad we managed to get it in Shropshire as really don’t want to travel the 100 mile round trip on the M6. It goes on.
Hi all.
I discovered this thread last night and found it very interesting reading! I am around three months post transplant and a few weeks ago my CNS gave me a letter to take to my GP, in order to organise my covid re-vaccination. I called ahead to check I’d be able to get it done, but the answer was “no”. I’d have to book online, or call 119. Tried booking online, but the system has me as vaccinated already. Called 119, and gave up after being on hold forever and a day!
Five days later, I got a text from my GP surgery, asking me to call them! I rang, and it was basically to give me some info on getting re-vaccinated!! Long story short, the receptionist forwarded me an email with a link to the Telford and Wrekin/Shropshire walk-in clinics! My sister had sent me the same information five days earlier…
Needless to say, I went to a Saturday clinic in Donnington. The medical staff were helpful, as I didn’t want to wait in the queue inside. I got jabbed on a chair outside! There was some issue regarding how the jab could be recorded. I think it was logged as a booster. A member of the medical team said he would give me an email address to pass on to my GP to organise the second jab at a hospital, but then he walked off without giving me the details!
So, I will go back in 8 weeks to get the second jab, all being well, but goodness knows how they’ll log that one!
I’m interested to find out if anyone has had both jabs again after their SCT, and if they had any issues with the second one…
I take it you are at Shrewsbury haematology. You need to flag this up with your consultant. My husbands vaccine was organised very well in the end. Refer to Anthony Nolan site where it refers to revaccination, it also refers to a time of I think 3 weeks between jab 3 & 4. You should have received a letter from the transplant team stating you need to be fully revaccinated.I hope this is helpful. I had an awful time sorting this out but got there in the end.Good Luck
Thank you Shropshire Lass, I’m all sorted now having had Pfizer jab number two on Sunday.
The transplant team at QE did indeed send me a detailed letter, and this was instrumental in getting things done, having circulated it to my GP and beyond.
The clinical lead for vaccines eventually arranged my jab, in the maternity ward of all places – I can confirm I’m not pregnant either – but seriously, we shouldn’t have to go through all this worry and chasing after people. They know who we are, we should be prioritised and better looked after. If only communication was better.
Now for my childhood vaccines…
Dear ALL ,
I ve read all your threads which explains the problems of getting revaccinated after asct .But it has not been easy for all patients with myeloma to receive advice from their haematologists re when, how to fit vaccination in with treatment schedule ( I have been lucky enough to arrange steroid holidays for my last 2 jabs) etc .
Like Sachbarnes I found Anthony Nolan website helpful and indeed they had reminded both gps and haematologists about a letter in september from nhs ? re the need for arrranging a third vaccination (not a booster and that the 3rd could be given 8 weeks after the second) as part our specific vaccination programme . I ,at last , recieved two letters from the haematology dept (Not my haematologist ) advising where to get vaccinated with the letter itself the mandate for the jab itself . This was just as well .as the later gps invitation lead to a blank point refusal at a local gp flu/covid site ..”its not six months since your second jab” ;thus I went to another site where they recocgnised the letter as a need for a THIRD vaccination .
So like you all, it felt as though nobody was in charge of our care re covid protection. As an ex clinician i feel the haematologists should take on all the complications of the therapy that they arrange for their patients in the first place .( gps fight shy even before covid , 111 and A&E are far from ideal they have enough problems of their own . ) They the haematologists should have been more proactive .
However having had two jabs and being part of the Rudy study I know that my antibody level is regarded as PROBABLY adequate ( at that time) and t cell response probably inadequate .BUT although it could be worse , I do not feel protected to the maximum . Hence the arrival of azd7442 ,which enables passive protection by providing two long acting antibodies given by im injection, is of significance to us all and especially after asct .( the more antibodies you have the better full stop.)
On my other thread re the radar trial; I have pointed out to the trial clinicians that this possible protection against covid may be available after asct, wth a view to adding this option in the protocol .
Best Wishes Michael
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