Many, many thanks to all those who have replied to me so far. I am truly overwhelmed by the support I have had. It means such a lot to know that you're not on your own. Have been to my GP this morning (she's great) who was appalled by my situation. I suppose I should have told her sooner but I always lived in hope Southmead hospital, Bristol would get it's act together! Have now asked for a referral to Cardiff which is a centre of excellence for MDS but see a lot of MPNs and has close links with Claire Harrison at Guys and St. Thomas's. If that works out it might be easier than London but at this stage I'm ruling NOTHING out!!