COVID re-vaccination after Stem Cell Transplant: A Guide

Underwent a stem cell transplant for MS three months ago. Around the 100 day mark, depending on blood results, you’ll be instructed by your oncologist to get your COVID vaccinations again. It’s a fucking nightmare - so capturing the process I went through below to help anyone else trying to do the same. (All below relevant to England. Might be different in other regions) Things you’ll need: - An email from your CNS (with NHS email domain) confirming you need to restart COVID vaccination. - Download and print the guidance on re-vaccination protocol from the Anthony Nolan site (or you may be given it by your CNS): [https://www.anthonynolan.org/sites/default/files/2022-05/Summary_of_JCVI_advice_on_Covid_vaccine_third_doses_for_SCT_patients_Apr22.pdf](https://www.anthonynolan.org/sites/default/files/2022-05/Summary_of_JCVI_advice_on_Covid_vaccine_third_doses_for_SCT_patients_Apr22.pdf) - Download and print the ICARS newsletter which provides instructions to vaccination centres on what to do when a stem cell transplant comes in for re-vaccination (from the JCVI): [england.nhs.uk/south/wp-content/uploads/sites/6/2022/07/20220624-ICARS-Newsletter-Issue-93-V1.pdf](http://england.nhs.uk/south/wp-content/uploads/sites/6/2022/07/20220624-ICARS-Newsletter-Issue-93-V1.pdf) - Your NHS number. What you’ll need to do: - Your oncologist will likely instruct you to contact your GP to organise the vaccination. I use Babylon for my GP in London, and they said they couldn’t organise another vaccination - and instructed me to call 119. - When you call 119, someone in a call centre will check your records and likely see that you’ve already had COVID vaccinations. They’ll inform you that you need your records reset, and someone centrally will call you about the reset. - When you get a call-back (could be any time over the following 5 days), they will reveal they don’t have the authority to reset your vaccinations, and instruct you to go back to your GP. A closed loop of doom basically. You might have more luck with the above, especially if you have a local GP clinic. But if you don’t, here is what I did: - Google where the local vaccination centres are in your area. For example, here is a map showing where the vaccination centres are in Tower Hamlets in London: [https://www.towerhamlets.gov.uk/lgnl/health__social_care/health_and_medical_advice/Coronavirus/Covid-19-vaccines.aspx](https://www.towerhamlets.gov.uk/lgnl/health__social_care/health_and_medical_advice/Coronavirus/Covid-19-vaccines.aspx) - Most offer walk-in vaccinations. Not all of them will be offering the same drug, so worth double checking against the advice above. - The first thing they’ll do is take your NHS number and check your records. As detailed in the ICARS newsletter above, the system the government rolled out does not account for stem cell transplants and re-vaccination. This will be your first roadblock. The first two centres I walked in to (both pharmacists), refused to give me a new primary jab because the system said I’d already had two. - You’ll need to keep going into vaccination centres until someone can engage independent thought and disengage from their ‘computer-says-no’ mentality. Here is the script I used on my third attempt: **Me**: Hi - my name is James. I recently underwent a stem cell transplant, which removed any immunity I previously had from COVID vaccinations. My oncologist has instructed me to get re-vaccinated. Here is an email confirming this from my CNS. **Them**: OK - let me check your records - what’s your NHS number? **Me**: My NHS number is [THIS]. Before you check my records, you may want to read this newsletter from ICARS which explains the system is not set up to support my situation, and offers advice on how to process my vaccination. **Them**: OK. (Checks system) **Me**: Before you give me my vaccination, you may want to read this guidance on what drug and dosage I’m supposed to receive. (hand over Anthony Nolan guidance). To clarify - it should be a primary jab, not a booster (the dosages are different depending on the drug). (At this point they might confirm whether they have the right drug or not.) **Them**: OK - let’s get you vaccinated. *Success.* If the above get’s too frustrating, you may want to call your CNS and get them to talk directly to the pharmacist/nurse.