Is there anything we can do as a group to ensure haematologists know more about MPNs?
(I have had 4 different ones in 4 years and not found any of them able to answer my questions satisfactorily. It seems to me I know more from the literature available for us , thanks to MPD Voice, meetings etc My present haem , youngest of the lot so far, seems particularly uncaring although that may be her 'manner'.)
Would it help if we had a questionnaire designed to elicit how we feel about our haems' responses to our problems? If the info collected were presented to a professional body ( is there one?) for haemos and/ directors of medical training courses, would this help create a change?
Perhaps this is too ambitious and there are better ideas. However, if they had an inkling of the gap their lack of understanding creates for us, I think they would be shocked. The NHS puts a lot of emphasis on Patient Satisfaction which haemotologists and all medical practitioners must be aware of.