From what I’ve read on here, it seems MPN specialists are thin on the ground. There aren’t any where I live. How does one go about finding one in the UK? ( I have seen Hunter’s list and the nearest one to me is a 3 hour drive away?)
What a great community on here - so helpful and positive - being newly diagnosed with MPN ET I find great comfort reading your posts 😃
Three hours may in fact be the closest MPN Specialist. This is pretty common for many of us. I travel about 2 hours to see the MPN Specialist. I typically see the MPN Specialist about twice/year. I also have a wonderful local hematologist who handles my ongoing care. The MPN Specialist consults/advises, i make the care decisions in consultation with my care team, the local hematologist delivers the on-site care. This approach works great.
It is absolutely worth travelling 3 hours a few times a year to ensure you receive optimal care. Some of these visits can be via telemedicine, but be sure to insist on tele-video appointments as they are much better than a phone call.
Hope you get this sorted out ASAP.
Thank you Hunter. I appreciate you taking the time to reply. Twice a year would be manageable and I shall now get in touch with the specialist.
Good plan. FYI - I often just make a day of it and spend the night. Go out for a nice meal (when COVID permits) or order out and have a nice meal delivered. There is a really great Nepali restaurant that delivers to the Residence Inn where I stay. Gives me something to look forward to.
What a great idea! I shall take a leaf out of your book …
I have telephone appointments with the team at Guy's approximately every three months. My local haematologist referred me. I have blood tests locally and still see my general haematologist but she takes advice from the MPN specialists. Could you ask your haematologist to refer you - my first appointment came through quickly.
I will definitely do that - thank you. It’s all a bit bewildering at first but I’m learning that there are ways to cope and I appreciate any advice. I hope you are doing well
Hi April-May. I live in Kent and eight months ago was referred to Prof Harrison at Guy's Hospital. Like yourself I wasn't keen to travel long distances for an appointment but in the end I went with a friend got an early morning appointment and we then had a lovely day in London. I now have 3 monthly phone calls unless I have an emergency when i phone their CNS help line. It's worth the effort to see one of the best Haematologist.
Thanks Heather I hadn’t realised before that being referred on NHS was a possibility and I definitely will pursue this.
Hi do you live in the Uk? My round trip is at least 5 hours in the car on the train and tube. I elected to do the trip for an MPN specialist. I know I couldn’t concentrate if I had to drive all that way. Good luck
Max has a list of MPN specialists. I know there is one in Birmingham and Newcastle keep me informed x
Hi, I am in the north of England and have an MPN specialist who appears to be based in Carlisle (an hour away from me) but does clinics in Newcastle. I have telephone appointments with him every four months and occasionally with one of the other haematolagists which seems to work well. Unless there are specific problems I do not see the need to actually attend in person as the consultation is based around the blood works. I never feel rushed on the telephone and always have a list of questions which are all patiently answered, anything that cannot be answered on the day is promptly followed up with a telephone call. I believe that each patient is discussed as part of a team consultation which gives me a lot of confidence in the knowledge that 'two heads are better than one'. Good luck on your mission.
All of that is very helpful for a newbie- thank you Janis. The whole scenario is a trifle overwhelming so it is great that everyone on here is so supportive of fellow MPN ers. I think maybe I might not need to see the specialist in person - at least to begin with so I shall see how it goes. Thank you so much for taking the time to inform me
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