Hi. I'm interested in hearing from anyone who has had access to the above treatments who has an MPN and are on Hydroxy. The cancer charities, including MPN voice say that we should be able to access an assessment to these treatments if we test positive for covid. I raised this about a month ago with my Haematology department and pointed them in the direction of the information on MPN voice and Blood Cancer uk. Howevger, I received a letter from my Haematology department today listing the conditions that MAY allow you to an assessment at my local hospital and it clearly does not mention MPNs. In fact it looks like a "copy and paste" straight from the original list of conditions. It states anyone that does not fall into that list will NOT be considered for the treatments if they contract covid. I am particularly annoyed that they have then copied the letter to my GP who had already said that they would refer me based on my vulnerability. So they have basically told my GP not to refer me. I would like to hear from anyone with a similar condition to me (I have PV) who has been able to access these treatments so I can go back and demonstrate that they are not interpretting the rules in the same way across the country. Thank you.
Antibody and Antiviral Treatments in UK - MPN Voice
Antibody and Antiviral Treatments in UK
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MWxxxx
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I out of the blue received an email explaining that and then a few days later a PCR test
MazcdPartnerMPNVoice
Hi MWxxxx, the list of conditions eligible for these treatments was updated early in Jan, to include people with MPNs, so maybe your haematologist hadn't received the updated list.
There has also now been another update to accessing these covid treatments, you can now access them following a positive lateral flow test rather than a positive PCR test.
Thank you. I would really like to be able to access that updated list which mentions MPNs so I can go back to my Haematology Dept with some evidence. Do you know where I can get a copy?
Hi MWxxx, the list is taken from the Clinical Commissioning Policy document - patients with haematological diseases.
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