MPN or Haematologist

[Green1988]

Should I see an MPN specialist or A Haematologist that’s also deals with MPN? I’m confused 😕 I stay in Scotland but would have to go to England ?

[Scottishterrier]

Where in Scotland are you about Edinburgh has a fantastic team of Haematologists at the Western general hospital your GP should refer you to the nearest hospital that has a haematology department of you don't or if you attended a hospital before you moved to Scotland they would have referred you to nearest hospital

[Green1988 in reply to Scottishterrier]

Yes I’m in Edinburgh we have been to see the haematologist and she is leaving so not sure who we will be seeing next. We went private also and he recommended my husband to take Aspirin but at the Western they said not too. So I’m really confused that’s why I thought should we see some one else?

[DJK12 in reply to Green1988]

Perhaps it would be a good idea to speak to the MPN Clinical Nurse Specialist at the Western and explain your dilemma - they are very experienced. If you phone the secretary, whose phone number will be on your husband's appointment letter, I'm sure she would be able to put you in touch with her. I understood there is a new MPN consultant there but maybe the CNS could reassure you about who your husband would see at the next appointment. I've always understood there are case conferences before clinics so all the patients are discussed and it isn't just down to one doctor/nurse/ pharmacist making decisions - maybe wrong but that's what I had gathered.

[Green1988 in reply to DJK12]

Ok will do. Thanks. Are you also from Edinburgh?

[DJK12 in reply to Green1988]

Yes, been going to the Western haematology clinics since 1985.

[Green1988 in reply to DJK12]

Oh wow which mutation do you have if you don’t mind me asking ?

[DJK12 in reply to Green1988]

CalR but of course only identified in 2013 and I don't know if I'm 1 or 2. Treatment has obviously changed in leaps and bounds since I was diagnosed.

[hunter5582]

A MPN Specialist is a hematologist with MPN expertise. Most hematologists will see a MPN patient, but only a few truly have extensive experience managing MPNs. You can look at the MPN Forum list to see some docs that MPN Patients have recommended. You can also just ask the hematologist how many MPN cases he/she has seen. Ideally that would be 50+.

[Mood2020 in reply to hunter5582]

Thanks hunter5582. Do you have a link to this?

[hunter5582 in reply to Mood2020]

Worldwide list mpnforum.com/list-hem./

USA list pvreporter.com/mpn-speciali...

[Scottishterrier]

Would do what the haematology at WGH has told you what to do as there must be a reason why they have said that I could not tolerate aspirin and they prescribed me a different anticoagulant take one in the morning and one at night so it. Works in my system all day and night why not phone your husband consultant secretary and ask who his new registrar will beStay safe

Scottish terrier xxx

[DJK12 in reply to Scottishterrier]

You must remember like I do, was it 10/12 years ago, when there was a reorganisation at the Western and two consultants were designated MPN experts? I thought it was very reassuring. I was unfortunately an in patient a few weeks ago and a junior doctor told me the MPN clinic was now the busiest haematology clinic - I gathered because of better diagnosing and much improved choice of treatment leading to better outcomes. Changed days from my diagnosis in 1985 when I was viewed as a rare and not particularly welcome oddity.

[Molly2009]

I'm in Glasgow and I see a haematologist every 2 weeks for blood and to monitor my meds

[Green1988 in reply to Molly2009]

Sorry do you mind if I ask why every 2 weeks? Which mutation do you have?

[Scottishterrier]

In my opinion one is good as the other all Haematologists are trained in MPN's so you would get the same advice and treatmentStay safe Scottish terrier xx

[Meatloaf9]

My experience has been that there is a world of difference between the knowledge of a MPN specialist and my community hematologist in a relatively small town. It has been worth it to me to see the specialist. I see him twice a year and my local hematologist every 3 months. Best to you.

[Green1988 in reply to Meatloaf9]

That’s sound like a good plan. Thanks

[Otterfield]

In my experience the best general haematologists recognise that their MPN knowledge is limited. After all, other blood cancers are more common so they naturally gain more expertise with those. My regular haematologist contacted Prof Harrison before I asked her to, and is never afraid to say when she doesn't know something. Definitely see an MPN specialist if you can.

[Green1988 in reply to Otterfield]

Thank you 🙏🏾

[LittleLuna]

Interesting to hear of the increase in MPN in Edinburgh Hospitals. So many of us our there (although I am still pending Dx).

I am based in Fife and have made an appointment with Dr Mark Drummond privately which you can do at The Spire in Edinburgh. He is an NHS haem but works out of Glasgow. I agree, all the 3 haematologists I have seen have some MPN knowledge which I would expect but an MPN Specialist is key, even if it is in collaboration with your haematologist.

[Rachelthepotter in reply to LittleLuna]

HiI’ve also made a private apt to see Mark Drummond ( not till 8 th August - popular man) as I may be moving to Edinburgh later this year - husband died recently here in Surrey. Not sure yet. Hard to make decisions. But Edinburgh does seem to have v good reputation. I have PMF , and finding that ruxolitinib is making me anaemic and tired. Getting to be transfusion dependent which isn’t good. Hoping more options now. Whereabouts in Fife are you? Flat I hope to buy is south side of Edinburgh.