ALL MPN SUFFERS SCOTLAND

[Scottishterrier]

Due to lack of interest apart from aime Imogen my Aberdeen helpers and a kind gent from Lauder there will be no more posts about educating GPS about MPNS and getting more MPN Clinical Nurse Specialists in haematology clinics that don't have these angels but those who are helping Aime Imogen and kind gent from Lauder keep up good work for I to will still be working with my MSP to make it happen

to my helpers best wishes

StevenGeorge

[Skyehope]

I'm in Scotland. Have I missed a campaign or petition or something?

[Scottishterrier in reply to Skyehope]

No not at all what I am doing is campaigning along with my MSP Clinical support nurse specialists at haematology clinics which would save a registrar coming down to the clinics so they can care for MPN sufferers on the wards and also would save if an emergency case came in then would save either consultant or registrar leaving clinic then that is where clinics then start running late I have one at my Hospital I saw her at clinic she noticed my RBC was low she suggested treatment but went to confirm this consultant she was spot on with diagnosis and treatment I attend Edinburgh WGH if you are interested in helping get as much info on your condition I have et Jak2 + then take it along to your local MSP to see if he can help also mention it would bring down cancer waiting times and also waiting times if an MPN emergency comes the registrar is on hand at the wards thank you for your interest

best wishes

Stevengeorge

[Scottishterrier in reply to Scottishterrier]

ps meant to say I am trying to get GPs educated in MPNs because if you feel unwell and you think it is inconnection with your MPN they have a blank look on their face as they are not qualified in dealing with MPN sufferes

[Scottishterrier]

Also if your Msp wants to take on your case if you have any ideas what you would want done tell him and get him either e-mail Alex cole-Hamilton he is my MSP or speak to him personally and get him to speak to him at Holyrood with your ideas as he wants as many ideas as possible to fight our corner

best wishes

StevenGeorge

[EleanorPV]

Hi, Ive only just seen this post. I'm in Aberdeen, where we have an MPN specialist nurse. How can i help?

[Scottishterrier in reply to EleanorPV]

by getting in touch with your MSP for an appointment to see them print of everything about MPNs and ask them if they could join up with Miles Briggs Alex cole Hamilton they are MSPs that are trying to help me get more MPN clinical nurse specialists in Scotland thank you for your offer of help

Scottishterrier

[Muchalls in reply to EleanorPV]

just saw this post ,I too am in Aberdeen and just been diagnosed with ET have only seen my consultant who just gave me a leaflet and said he would do a phone call in 6 months ,so feeling a bit let down and with many questions.Can I ask how you make contact with these MPN specialist nurses

[EleanorPV in reply to Muchalls]

Hi Muchalls,

You should be able to get answers from a MPN specialist nurse through these contacts. Tel – 01224 551551

[e-mail]

Monday to Friday 9am – 5pm.

Maggies, Aberdeen, fife and Dundee also have a zoom meeting on the last Wednesday of the month usually between 2 and 3pm (if you are interested contact Maggies to be added to the haemotology support group). Maggies in Aberdeen are still open, by appointment only - 01224 645928.

you are not alone.

Eleanor

[Muchalls in reply to EleanorPV]

Thank you so much Eleanor , it means a lot that someone cares enough to reach out and give me help . Jill

[EleanorPV in reply to Muchalls]

I've been there Jill. Many people have reached out and helped me. I'm passing on the knowledge that I have.