Following my nightmare of no contact with a consultant for 10 months since diagnosis, I have now seen one! The wonderful Sister in the Chemo suite (where I receive my transfusions) was so aware of my distress that she arranged a meeting for me. Now this Consultant is not to blame for my neglect, she knew nothing about me but now I'm 'one of hers' and judging by the 90 minutes I spent with her, she is good! She has agreed to refer me to Claire Harrison and supports the idea of taking part in a trial. She came to the meeting with treatment ideas! She has arranged an ultrasound to get a precise idea of what's happening with my spleen. She has arranged another appointment in three weeks! I was already reeling when I received a reply to my email to Claire Harrison by return. So some people DO care. There is support. It's just that sometimes you have to look for it, fight for it and maybe have a bit of luck! I suppose the one thing others can take from my tale is that a week is sometimes a long time with MPNs. I also learnt that there is nothing better than the support of others who share the same journey. Thanks to you all.
I've met a consultant - and she was good! - MPN Voice
I've met a consultant - and she was good!
I am so glad you have had some success. I agree. People do care. It's just finding the right people! Good luck with your treatment.
That's such good news ,,well done for making the first steps to education ..this site is our life line isn't it ? Thanks to the network of dedicated people who keep us in touch .
So pleased to hear this , I wish you all the best with your new Consultant & good health , I know what you mean about feeling a weeks a long time with MPNs ,
Pam x
Hi there, excellent news for you and you're in good hands now, Claire Harrison is THE best. Good luck JW
It's about time we started naming the NHS trusts that give zero support as in your case, until we do there is no incentive for them to change. Perhaps when we have a definitive list we can start a campaign for quality treatment on Change.org.
I am pleased for you and happy that your NHS Trust has come up to your expectations. Thank you for letting us know. So often we only hear the bad side of the NHS. It sounds as if the nursing care has has very good and supportive.
Best wishes,
Borage
Great news Trevic, good to hear that you are going to be sorted out. Maz
Good news, glad you're getting somewhere!
Im pleased you have found the right help and is very reasuring to others on here also 😀
I was so pleased to read your post. I agree with Shazzer1976 people do care its finding the right people. Please keep us updated on what happens, what trial you get into and how you do. I think thats what really the greatest part of this forum is firstly that it is so supportive and secondly its a wonderful way to share information. Good luck with your treatment.
So please to hear your good news, it's great that thing moving forward for you x take care and let us all know how it goes Liz Cx
Headaches 
Another week and another issue with my consultant
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