This was the first in-person forum MPN Voice has held since the end of 2019, it was very well attended by MPN patients, with their families and friends, from across Ireland, who were all extremely pleased to meet-up once again in-person, to talk to other people with MPNs and to hear the presentations given by…
In Conversation With … Kirsty Crozier, ANPR, based in The Great Western Hospital, Swindon. Kirsty talks to Nona about her role as the haematology advanced nurse practitioner within the haematology department and the support and services she provides to MPN patients. She also talks about how haematology ANPRs and CNSs (clinical nurse specialists) support patients…
Bone marrow biopsies. A hot topic at patient forums – online and in-person – and the three words that cause anxiety in many as soon as they’re spoken. Do we need a biopsy to confirm an MPN diagnosis? When should we have one? What do they tell us that blood counts don’t reveal? And how…
Antibody and antiviral treatments for people with blood cancer (updated 22 April 2022) People with blood cancer, which does include people with a MPN (who are taking medication for their MPN – aspirin alone does not count) can now access the latest covid treatments after a positive lateral flow test, rather than having to wait for…
In Conversation With … Debbie, who talks to Nona about her diagnosis of ET and shares some tips on how she manages and copes with her symptoms. Click here to view the vlogcast. We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk. We would like to thank Debbie for…
I am sat with my mum in the Cancer Centre at Guy’s Hospital in London. It is a light and airy building with tall windows and colourful seating areas. Dotted around the walls are large screens which flash every couple of minutes with patients’ names and allocated room numbers. We have just stepped out of…
We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the Scottish Medicines Association (SMC) has decided that fedratinib is to be made available to NHS Scotland. The drug, to be distributed under the name Inrebic, is the first…
In Conversation With … Jon Mathias, co-chair of MPN Voice, who talks to Nona about advocacy and what it means for the MPN community, representing and speaking on behalf of the MPN community with submissions to NICE, the SMC and the NCPE regarding decisions on value for money for medications. And how MPN Voice collaborates…
Have you ever asked yourself ‘why do I have an MPN?’. I know I have. It’s a question that I am sure appears frequently at point of diagnosis and occasionally resurfaces over the course of living with an MPN. The chronic nature of the disease means that patients like us have a long time to…
As of 21 February 2022 the JCVI recommends that people aged 12 and above who have blood cancer – MPN – should have five vaccine doses (three primary doses and two boosters). Blood cancer and immunosuppression Most people who are living with blood cancer have a weakened immune system, which makes it harder to fight…