The idea of an ongoing single "Blood Book" in which all hospitals and GPs providing care for an MPN patient can record blood test results and medication over the long term is getting some traction. Forum members here whose hospitals and GPs share that sort of system have said here how useful they find it. Just a simple paper based system with the relevant dates and numbers in it. Because the blood results and medication changes are recorded by the health team as they happen they are a reliable source of information, not just for patients, but also for other doctors treating them.
I was contacted by a researcher at Guys who is looking at ways of improving the patient experience, and she was very interested in the idea of a Blood Book (thanks for the name, Bruddery!) I'd given her info about the two examples people had shared with me here (Cork and ?Lancashire ) but she'd welcome input and experiences (and ideally where she can get actual physical copies of the books that the various hospitals use -so a contact in a Haem department would be helpful to her) .
Maz, I'm not sure what the etiquette is about my putting her contact email on as part of this message - she is happy for me to do that, and it would be the simplest from my point of view. If that is OK, her email address is Melanie.Dalby@gstt.nhs.uk and she would welcome any suggestions . If that's not OK then people can message me and I can pass their emails on.
All the best