Hi everyone,
I’m based in the UK and have the wonderful NHS caring for me. My Haematologist is great and I feel well looked after. I was wondering if there is a way to find out if she’s a MPN specialist or just a haematologist and if that matters? If she’s not an MPN Specialist how do you find one through the NHS. I’m just curious. What are your experiences?
What's your doctors name?
Dr Barbara Hammer
In an initial search she does not seem to be a MPN specialist but here is a link to MPN specialists in UK. I'm in the US so I'm not familiar with NHS but I'm sure somebody here will be able to help you.
I just read a couple of your posts and saw that your initial platelet count was 1.7 million. I would think you should definitely see a MPN specialist. Also I just read a very interesting article that I think you may be interested in as it has to do with stressed induced ET.
ncbi.nlm.nih.gov/pmc/articl...
Thanks for the article. My Haematologist said there isn’t a link between ET and stress but my platelets going up to 1.6 after returning to work and four months on Pegasys seem to disagree!
Yes, that is a very impressive count. Makes you wonder why your bone marrow became so agitated so quickly. Your doctor does have very good reviews. It could be recommended you visit a MPN specialist once but then after that continue to see your normal hematologist.
Since being diagnosed with ET I’ve noticed that I can’t cope with stress and get anxious very easily. I put it down to my whole body is unable to work as fast as it used and I then stress about unable to complete tasks.
My platelets when unmediated can go to 1.9million. Whilst doctors say there is no link, I too have found stress correlates with an increase in my platelets. But as stress is so individual I guess it is difficult to establish a link. In the end I reduced stressful work to help keep myself healthier and it works for me.
Thanks I suppose that’s the next stage.
My local NHS hospital haematology clinic has only general haematologists but they are fantastic and like you I feel very well looked after. Importantly, they have several other MPN patients under their care and so are experienced in our diseases and treatment options (like Pegasys which I am also on, for PV). They are also able to refer to an MPN specialist for a second opinion which might be advisable in your case since your platelets remain very high despite Pegasys. As for stress, I have a stressful full time job but counts remain well controlled after almost 4 years on Pegasys. X
Glad to hear of your success with Pegasys, hopefully I’ll see some positive results soon.
Just curious how often you see the hematologist. I’m not sure what the standard for being well cared for actually is. The NHS is new to me
It depends on how well I am to how often I am seen by a Haematologist. When my platelets were well controlled I was every four months, but things took a nose dive earlier this year and I’ve seen her weekly, alternating weeks or monthly pretty much all year.
Wow. Thanks for your quick reply. I was officially diagnosed with PV in September after a clot and month of weekly venesections. Saw hematologist once to start meds and hear diagnosis. Rest of communication has been with hematology nurse who is awesome, but starting to feel like I should be having more contact with hematologist.
I’ve mostly seen the same Haematologist, but sometimes it’s been her registrar and for counselling or instruction on how to take a med I’ve seen the Haematology specialist nurses. It’s a really good department.
Hi, it depends on need. Currently I see my haemo every 3-4 months as I am very stable, with normal bloods, and am on a maintenance dose of Pegasys every 3 weeks. In the haematology clinic of my hospital I take bloods on arrival and about 40 min later see the consultant to discuss the results and get a new prescription for Pegasys. I usually see the same consultant unless she is not there on the day. Currently, the meeting with the consultant is pretty short, 5 min or so, given that my PV is fortunately stable and controlled. At the start I saw the consultant more often , every 3 weeks, then monthly, then every 2 months and now every 3 months. And my first ever consultation lasted over an hour! There is a shortage of haematology nurses in my clinic so I only saw their (amazing) nurse at my first appointment, then when I started Pegasys for advice and one more time recently to discuss exercise. Overall, I am extremely happy with my care in what is an extremely stretched NHS. Your own care seems to be managed differently from what you say, it depends on the clinic you attend. You can always request to see your haemo at your next appointment. All the best, Susana x
Thank you!! Very helpful!
Referrals to consultants are usually made by your GP as they have to pay! Tertiary outpatient referrals are not allowed unless they seek the OK from your GP.
Thanks for the info
I believe that stress plays a big role in any illness. Last year we were dealing with my sibling who has mental illness. He had moved here from another state but refused treatment and was causing a lot of havoc. During those months, my hemo was unable to get my platelets under 700. I became anemic and my fatigue and dizziness increased. My brother finally went back and my numbers improved and I have more energy. My theory is that stress increases inflammation and that, in turn, affects our bone marrow.
A great theory, I’d definitely agree. I’ve been away from work for the summer for three weeks this Wednesday which is my next appointment. I’m hoping my platelets have dropped, under a million and I’d be over the moon. But it’ll have to wait and see and I won’t be surprised if they’ve not changed.
A great theory, I’d definitely agree. I’ve been away from work for the summer for three weeks this Wednesday which is my next appointment. I’m hoping my platelets have dropped, under a million and I’d be over the moon. But it’ll have to wait and see and I won’t be surprised if they’ve not changed.
Hiya Hun I have mf and iam under Claire Harrison at st guys she is a mpn specialist and they are amazing I also know oxford Churchill’s have Adam mead he’s also an excellent mpn doctor I would highly recommend you do see a specialist I think it’s the best option all around for anyone suffering these dieseases they have passion for what they do and want to help hope this helps I know a few more but iam not sure where you are based x
Thanks for your question. I was wondering the same thing. I am seen at university college Hospital London and see a different haemotologist every time and get conflicting advice. One said it wasn't cancer, another one said it was. Another wanted to prescribe a very old drug very rarely used now. On another visit one sent me to have blood withdrawn but it was never repeated. Most alarmingly on another visit I was incorrectly prescribed which fortunately was queried by the pharmacy.
I’m really happy with my care so far, I usually see the same consultant, but when I’ve had a question I have spoken to the other people on the team. I was just wondering if she was an expert in MPNs.
I have MF and am under UCH and mostly see the same consultant - I can (so far) only praise the care that I have received. SkipperL
My consultant isn't on the list either but I'm wondering whether not being on the list proves a consultant isn't a specialist. I'm afraid to accuse mine of not being a specialist. I'm only on aspirin and watch and wait, so I don't want to create a fuss but I have other issues as well.
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