HI, I was diagnosed with primary MF in July 2014. Despite attending haemo clinics every four weeks to start with, then every ten weeks and then every eight weeks I have NEVER seen a consultant. I live in the Bristol area. I have seen a collection of registrars and doctors all of whom have now moved on. No one has answered any of my questions. I receive transfusion support - 2 units per month and then every three weeks and now every two weeks and my Hb is still dropping! I keep trying to discuss medication but keep being brushed off. As I never see a consultant I assume these other people are not authorised to prescribe and so I am told I will know by the next clinic. I presume they talk to each other at times! When I turn up at clinic I see someone different who denies all knowledge of any discussion about medication and I'm back square one. Today I discovered that the Consultant whose name appears on all my letters and whom I have asked to see by name is not my consultant at all. It is another person whom I have never heard of and certainly never seen!
The nurses in the day unit are fantastic and have kept me going all this time but despite them telling the doctors today that I was distressed during the FIVE hours I was in the hospital no-one came to see me.
I am going to see my GP tomorrow to ask her to refer me elsewhere possibly Cardiff or even London. The Southwest seems to be a bit of a wasteland of MF. I can't go on like this. Just recently I have felt so ill that I have been afraid to go to sleep in case I don't wake up!!