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!!

4 Replies

  • just wanted to say i have met Steve Knapper from Cardiff hospital and he is a really nice person. i first met him at the Cardiff forum. then asked my GP to refer me to see him and he told me i was on the right treatment and because i couldn't transfer to him as i am based in pembrokeshire, he gave me his email address and his secretary's contact number in case i ever needed advice. so good luck with your referral. if you get a chance to attend the Cardiff forum you should go it does give you a chance to meet some of the Drs and other MPN patients.

  • I can't really add anything else to what has already been said by others. This site is fantastic for getting advice and support. Can only say pleased you have found a way forward. You deserve better care, sounds like you will get it at Cardiff, good luck with your referral. Let us know how you get on Liz C xx

  • Hi, I was appalled by your post but if your new situation has links with Professor Harrison you will now be in very fine hands. Good Luck. JW

  • you are in good hands and know things will now improve

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