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MPN Voice
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HI guys its me again

I am looking for people that suffer an MPN from Glasgow central belt Fife and Highlands I am campaigning for every hospital in Scotland which does not have a MPN clinical nurse specialists my argument these nurse specialists are worth their wait in Gold I do not where I would be without her she is at the Western General Hospital in Edinburgh her diagnosis is spot on and would do what consultant or registrar do given blood results my argument having them at a haematology clinic day would save a registrar coming down to do a clinic then get called away creating backlog where if they were on a ward and an MPN emergency came in they could be straight down and patient gets immediate attention and they want to bring cancer waiting of all cancers down it would help on Haematology wards as registrar on ward if not dealing with an emergency I with the help of my local MSP who is brilliant and backing me and fighting my case got a response from Shona Robison MSP health secretary but total fob off when asked how MPNCNS have we got the response to look up a website so I would like you if you like no pressure the areas mentioned get as much info as possible take it to your local MSP and see if they would be prepared to take our case on honestly the MPN clinical nurse specialists are a god send kind caring and compassionate also getting GPS educated as well so you don't suffer in silence till next hospital Visit

best wishes to you all


3 Replies

Hi there, I'm in Aberdeen and not aware of a clinical nurse specialist there, though I could be wrong. If it's not happening in Scotland very much, it might be an idea to widen your question out so that any MPN patient with experience of a CNS could give their positive views on how this has helped. That might well give you evidence to present a stronger case to our health secretary.



I have myself I have ET Jak2+ I first met my MPN clinical nurse specialist at the mpn forum at the western general Hospital in Edinburgh she is a god send there was once a foreign doctor had me atdeaths door I was really upset I phoned MY MPN nurse specialist she listened to what I was saying and she said the doctor as hard to understand and a lot had got lost in translation she has helped me out brilliantly with dwp as I am registered disabled due brain op going wrong

then she took me for my appointment and she was total on the ball my rbc was low and she said this is what I suggest we do she went to clarify her diagnosis with my consultant who told her she was spot on with treatment and no matter how and when you need her she is always there for you either by phone or in person if she is busy she will make a point of phoning you that afternoon you cannot get better treatment than that


1 like

I have only 4 likes I was wondering if it would be possible if the people that do like get all stuff off internet about your mpn and the Mpn clinical support nurse and take it to your local MSP to fight your corner and if your doctor does not have much knowledge about your MPN tell your MSP about that as well

best wishes and good luck



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