We’ve published a document for MPN patients to share with their GPs. We’re aware that some people with MPNs are still having trouble getting on the shielding list (and therefore being prioritised for the vaccine right now) - https://media.bloodcancer.org.uk/documents/GP_letter_for_MPN_patients.pdf
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Such a shame that this is still an issue. It must cause so much anxiety. This is great information for those still struggling and I’m sure will be a great help.
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Thanks so much for campaigning and informing us all on such an upsetting issue for some MPN ers.
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(new user alert!)
I saw about this letter from Blood Cancer UK and MPNVoice on facebook, and it’s got me proper anxious! I’ve been so scared of catching this after my sister has struggled with long covid since catching it in March 2020, so I’ve been incredibly cautious, but not fully shielding. Now I’m really pleased I’ve been so hermit-like!
My platelet count has been relatively low since diagnosis in September 2020 (the year that kept on giving) at the 500ish mark, I don’t understand enough about ET yet to know what’s good or bad, except what I see others on here mentioning. Is is possible my GP won’t add me to the shielding list because my platelets are “good”, or should they take the letter as “anyone with an MPN”? Just nervous that they’re going to refuse, can they do that?!
Thanks!
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Hi, I have ET and am taking Hydroxycarbamide an aspirin. After much anxiety and telephone calls / messages with both my GP and CNS a copy of a letter sent to my GP last June by my consultant was faxed to the GP again last week and almost immediately I received a telephone call to go for a COVID vaccine. I have since received a shielding letter, not sure why the original letter wasn’t acted upon I just assume it was due to the extra pressure on the surgery due to the pandemic.
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Thank goodness you are now on this list!
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Hi @vicster a great big welcome to posting on our forum.
I think the anxieties you have are so natural.
I think we are all feeling like hermits and it has been for a long time now.
We cannot tell you what to do but many people have taken the letter to their GP with a positive outcome, You cannot make them do something but you could also appeal if you are not happy with the outcome.
Please keep posting as we support each other on here and I would like to hear more about you.
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Hi @JAS, a great big welcome to you and thanks so much for letting us know your experiences, you have already shown the value of our forum,
Who knows what happened between your consultant and GP, but least you have had a positive outcome.
We also support each other on here and I look forward to hearing more about you.
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