MPN Specialist list

[Purple-Joni]

Hi. I'm considering moving to Scotland (from Norfolk) and wanted to see where the best MPN specialists are located. I remember seeing a document some time ago but can't find it now. Could someone share please, and/or offer any advice if they are based in Scotland (possibly Inverness). I have ET, diagnosed 2 years ago. 🙏

[hunter5582]

Here is the list. mpnforum.com/tsr-the-list/

[heights8 in reply to hunter5582]

Hi, im unable to access the mnp specialist list with this format

[hunter5582 in reply to heights8]

Not sure why mpnforum.com/tsr-the-list/ is not coming up for you. The link is working from this end. There is an older version of this list here mpnforum.com/list-hem./

[DJK12]

You have to note that the list is purely a patient recommended one and not an official NHS site. It only shows one doctor in Scotland which is not accurate. Dr Drummond is shown in both Glasgow and Edinburgh. He is NHS in Glasgow at the Beatson and private in Edinburgh. Everyone speaks very highly of him. I can't help you with Inverness but the Edinburgh Western Hospital haematology department is a centre of excellence and has at least two excellent MPN experts. While an inpatient I've also found the other consultants knowledgeable about MPNs. I hope someone else can give you information about the rest of Scotland.

[Purple-Joni in reply to DJK12]

Many thanks, this is really useful. We are looking at moving to Scotland or Wales and my health and access to good care is an important consideration.

[DJK12 in reply to Purple-Joni]

You are right. It is certainly a big consideration when moving. It would appear Edinburgh, Glasgow and Inverness are covered for MPN experts. I can only speak about Edinburgh but the Western is a large teaching hospital (it also has one of the experts covering St John's in Livingston, West Lothian and patients come up to Edinburgh from East Lothian) which I've attended for first ET since 1985 and now Post ET MF. They recognised that MPNs needed specialists about 10-15 years ago and patients were reassigned. In fact one had patients sent to her from other parts of Scotland as she was an expert on Ruxolitinib which was new at the time. Apart from a difficult time during covid there have always been 2. It's a pity perhaps there isn't an official list that can be consulted but your present consultant will most likely have Scottish contacts. Good luck.

[Purple-Joni in reply to DJK12]

Many thanks. I really appreciate you taking the time to reply. I do work for the NHS so going to make some enquiries and will post any info here too.

[ainslie in reply to DJK12]

I am treated at the Western, who are the two MPN experts you refer to. There may be good haematologists there but I don’t think they would consider themselves MPN experts.

I am under the impression Mark Drummond is the only MPN expert in Scotland

[DJK12 in reply to ainslie]

I've sent you a PM.

[hunter5582 in reply to DJK12]

It is correct that this is a patient recommended list. There is nothing "official" anywhere that I am aware of. Part of the issue is needing an official definition of a MPN Specialist that does not exist. Many hematologists will see a MPN patients but that does not mean that they are an expert in MPNs. This is really a sub-specialty that is not very common due to how rare MPNs are. I use my own definition of what a MPN Specialist is when selecting a provider. This is something we each need to do since there is no official designation.

This is what I use to define what I expect from a "MPN Specialist"

1. Active member of a MPN Center/Clinic team.

2. Focus on MPNs as a primary/major focus of clinical practice

3. 100+ MPN patients (past & present)

4. Up to date on state of the art and emerging MPN treatments.

5. Active participation in MPN research.

6. Presents/attends MPN forums/trainings/conferences.

7. Values a collaborative relationship with patients. Respects the patient’s ability to make decisions.

8. Focus on underlying mechanisms involved in MPNs (e.g. molecular pathogenesis, kinase pathways, proteomics, genetics).

The MPN Forum list is only as good as we make it. I am hoping the list will not go away as MPN Forum is undergoing some restructuring. Hopefully, we can all contribute to the list to ensure it is up to date.

[DJK12 in reply to hunter5582]

Yes the list is a good starting off point certainly with the lack of anything else and getting to know your doctor is an excellent idea. However the question was Scotland specific. Someone newly diagnosed/ moving here might be worried or worse frightened by it appearing that unless they lived within the remit of NHS Greater Glasgow and Clyde Health Board or had the means to go privately that there is no other expertise here. This is just not accurate.Undoubtedly Scottish patients are affected by a number of issues: the rarity of our complaint, wildly different geographical/ population sizes of our 14 health boards, NHS financial constraints, a nationwide shortage of haematologists etc etc. (Also picking a provider is really not feasible here. ) As a result expertise is based in the cities but I, for example, like many others have had the benefit of an expert MPN team in Edinburgh for many years. I know I'm lucky but I hope it does reassure others that we aren't abandoned.

[Skyehope]

Hi. I'm in the Highlands and am seen in Raigmore in Inverness. As far as I know, there is only one MPN specialist in Scotland and that's Dr Drummond as mentioned above.

Raigmore does have a consultant with a keen interest in MPN's, a Dr Frances Buckley. She is very nice and was involved in the MPN Voice in person forum in Eden Court Inverness last year.

Dr Drummond is apparently consulted on MPN cases when required if that helps?

Take care and good luck with the decision making.

[Purple-Joni in reply to Skyehope]

Thank you for the information SkyeHope. You live in a beautiful place, I have fond memories of a holiday there many years ago.

[Blue_Top in reply to Purple-Joni]

Hi I moved from Oxfordshire to the Highlands with my condition.

Through here I found Dr Drummond was the only MPN specialist in Scotland and thanks to my MPN specialist in Oxford and due to my work office being in Glasgow (although I worked remotely) I was able to transfer to his service initially.

After the first year though I was transferred to Raigmore (the main driver seemed to be which hospital was issuing/paying for my medication) but I still see Dr Drummond in person annually.

[ainslie in reply to Skyehope]

I think this is accurate, I hear Inverness care is good, my sister goes there but again I doubt they would call themselves MPN experts.

[grandpa101]

I live in the highlands and can not speak highly enough of the the doctors at Raigmore hospital in particular Frances Buckley she has my MF under control for the last five years I was at the MPN forum in Inverness and am seeing her in two weeks time

[Gipsy123]

I’ve been seen by the very good MPN team at the Western General in Edinburgh: Dr Koutsavlis heads it. Nice guy. And as others have said Mark Drummond sees NHS pts in Glasgow and does private sessions in Edinburgh.

I’m going back south for a variety of reasons, and will returning to Prof Harrison’s team at Guys.

Downside of Scottish NHS is slower access to latest drugs: I’m getting very anaemic now. ( I have MF). Upside ( in my experience at the Edinburgh Uni Health Centre ) was a GP I could phone.

Best of luck. Do contact me directly if you want tio chat.

[DJK12 in reply to Gipsy123]

I'm also anaemic with MF and on ruxolitinib. Unfortunately for various reasons it's not suitable for me but it was good to see the Scottish Medical Consortium approved momolitinib in the summer which appears to help many with this tiresome side effect.

[Gipsy123 in reply to DJK12]

As of 30 th Sept 2024, when I had a unit of blood at the Western General in Edinburgh, momelotinib was not on offer. Might be different in different health boards.

[DJK12 in reply to Gipsy123]

Disappointing as it appeared to be licensed in June this year. Yes I'm on EPO injections with variable results.

[Gipsy123 in reply to DJK12]

Were you ever prescribed EPO injections to help the ansemia? ?

[Freethorpe]

Hello - I am interested as to whether you found a suitable specialist in Norfolk. I am based in Norfolk and I have had to transfer my care to London (UCH) in order to find an MPN/ET specialist. I think it is really important to have an MPN specialist so I think you are right to make sure there is one when you move.

[Purple-Joni in reply to Freethorpe]

Hi I'm in Norwich and I go to the NNUH and they are looking after me well there. They are not necessarily MPN specialists but Haematologists. I do know someone with ET who has joint care with Guys (Prof Harrison) and NNUH. Do message direct if you wish too.