MPN specialist near Nottingham

[jodary]

Hi

Does anyone see an MPN specialist near to Nottingham,Leicester or Derby ? Not just a haematologist, if so would you mind messaging me . Thank you

[AndyT]

Hi Jodary - both Nottingham City Hospital and Leicester Royal Infirmary have MPN specialist clinical teams within their haematology departments - not just the doctors but specialist nurses and pharmacists too. I’ve been treated by the Leicester team for the last 18 years.

[jodary in reply to AndyT]

Hi, I have been attending city hospital Nottingham haematology for the past 12 years. I do not have a good relationship with my consultant who seems to view me as an arkward patient. Currently on hydroxycabomide and have been fine but lately feeling under the weather, cold, tired even weak at times . My red cell count has gone under range but I have been told to see my gp which I am going to do when I can . I haven’t been told that I am seeing a MPN specialist I thought it was a haematologist. I don’t feel happy with my care

[Adaelle]

Hi

If you’re happy to travel there is great MPN specialist prof. Somervaille in Manchester The Christie . I’m from Stafford and I wasn’t happy with my haematologist so I asked GP to refer me . I was seen within one month and I’m very happy . Now when my numbers are under control I have telephone appointment every 6 weeks

[Lilliegarden]

Yes, I’m under Dr Saleh at Notts City. Excellent care so far in the past year having experienced terrible care in a different county.

Notts City also have 2 specialist MPN nurses, Angela & Salome. Both very easy to get hold of, very understanding & I’m sure could be really helpful to you in your scenario. Happy to pass on direct contact info if you’d like it.

Heather

[hall2]

There are two MPN specialists at Leicester Royal Infirmary. Dr Gary is one of them.

[hall2 in reply to hall2]

Sorry I meant Dr Garg

[shiftzz]

I am also at Leicester RI and Dr Garg is very good, takes her time and reads the notes..

[william-Indo]

Here is the list of MPN :

mpnforum.com/list-hem./

[Curlydogs]

I have just transferred from Notts City to Leicester, I think the MPN specialist on the list for Notts is incorrect, Dr Garg at Leicester is a socialist, as been there for many years. The clinic at Leicester is just for MPN’s. Not sure this is the case at Notts. I was happy at Notts while my MPN was behaving. So far Leics have been very thorough.

[jodary in reply to Curlydogs]

Hi did you ask to transfer or was it because you relocated . Leicester isn’t too far for me to go as I live near the Notts:Leicester border

[Curlydogs in reply to jodary]

Hi, I lived in Leics for the majority of my time with Notts City Haems but worked in Nottingham until I retired. I echo what Maurabawn says about Dr Fisken, I was seeing her in Notts for about a year, she was part of my decision to move to Leics as she was very good and I did not feel rushed during consultations. Very thorough. Her move to Leics along with living in Leicestershire, Leics clinic being solely for MPNs as well as Dr Garg being a MPN specialist also helped me make my decision. My MPN has changed over the past months and I felt it would be more appropriate to go back to Leics who diagnosed me some 17 years ago. It is early Days yet but I am feeling far more confident in my treatment.

[jodary in reply to Curlydogs]

Did you have any problems changing? I imagine because you had a good reason to change probably not. I am not happy with my current care and would like to transfer to Leicester but in my case I would have to actually say I’m not happy and I don’t know how easy it is to just ask to move

[Curlydogs in reply to jodary]

How close to Leicestershire border are you, are you closer to Leicester City than Notts City hospital. Perhaps the distance may count as good reason. Do what’s right for you, someone else may be able to tell you how a transfer would work. One of the consultants wrote to Leicester in my case.

[jodary in reply to Curlydogs]

Unfortunately it is twice the distance to Leicester than to Nottingham and z I can’t see the consultant being very happy if I say I want a transfer as I’m not happy with them. Maybe zi should move house lol

[Curlydogs in reply to jodary]

If Nottingham do not have any MPN specialists you could perhaps say you would be happier seeing a specialist. You could ask if there is one you could see in Notts first. You could ask if your existing one is a specialist first to start the conversation.

[jodary in reply to Curlydogs]

That’s a good plan thank you

[mhos61 in reply to Curlydogs]

That’s my understanding too.

I can’t find any evidence that specifically states Dr Byrne is an MPN Specialist. That’s not to say she doesn’t diagnose and manage MPNs well, or has participated in ‘some’ MPN research. I believe her skills and expertise though is in CML and stem cell transplants, which in itself is to be greatly admired.

I do think haematologists can have a ‘clinical interest’ in certain areas, but in my opinion a true MPN Specialist specifically focuses on Myeloproliferative Neoplasms. Evidence of this should be noted in their MPN peer reviewed research papers, clinical trials and their participation in international MPN conferences. In other words ALL things MPN!

[Curlydogs in reply to mhos61]

Absolutely agree with your findings and opinions.

[Curlydogs in reply to Curlydogs]

Should say Dr Garg is a specialist not socialist, whoops.

[AndyT in reply to Curlydogs]

😂

[Maurabawn]

Hi. My consultant at Nottingham City Clinical Haemotology is Dr. Sabet. I think there are several clinics, but I always go on Tuesday mornings, every 3 months. I have ET(MPL driver) and was diagnosed in Nov. 2021. I have had excellent treatment so far. I seem to see a variety of medics but always feel listened to. I saw Dr. Fiskin for nearly all my recent appointments but she has now moved to Leicester - a real loss for Nottingham. Hope you get sorted soon.

[Tortina]

Hello

I attend the Nottingham City hospital and usually see Dr Jenny Byrne who is an MPN specialist and leads the team . There are 5 other MPN specialist doctors there too and they are all excellent. There are 3 fantastic support nurses as well . I don’t recognise the name Dr Sabet , maybe he is a haematologist but he’s not on the MPN team as far as I am aware

When I first attended I had an unspecified MPN and it turned into myelofibrosis . On the recommendation of Dr Byrne and afterthe necessary health checks I had a stem cell transplant .

I now attend the follow up clinic regularly .The care and support I have had from the doctors and support nurses has been amazing . I can’t fault it .

I would highly recommend the doctors in the MPN unit at Nottingham City Hospital . Dr Byrne and her team are fantastic .

Tortina

[jodary in reply to Tortina]

So I do attend the City hospital.snd see Dr Wadelin but was not aware if she is an MPN specialist or not. Do you happen to know ? Would probably be pointless seeking one if I’m already seeing one

[Curlydogs in reply to jodary]

As far as I am aware there are no consultants at Nott8ngham on the MPN specialist list. Dr Byrne is on the list but when you look closer her specialism is Leukemia. Might be as well to ask Notts which consultants actually specialise before changing hospitals. Dr Garg at Leics is on the list of specialists.

[Tortina in reply to Curlydogs]

I don’t believe you are correct . I am a patient at Nottingham City and usually see Dr Byrne or one of her team .

She is definitely an MPN specialist . If you Google her you will see that . Plus she has a team of 5 other doctors on her team .

I was not a leukaemia patient . I had myelofibrosis and after bei ng well cared for and having a stem cell transplant I am in remission .

Tortina

[Curlydogs in reply to Tortina]

That’s good then perhaps Jodary can ask to see her, when I clicked on the MPN specialist list the post didn’t confirm that. Excellent that you are happy with Dr Byrnes and have had excellent treatment. I have been with Notts City hospital for many years and had not heard of Dr Byrnes. I have googled her but not found that info.

[Tortina in reply to Curlydogs]

I’m going to double check . I did go to the MPN clinic before had my transplant .

Dr Ericco is also very good mind you all the team seem too be too.

I can’t fault them . Ive had excellent care .

Tortina

[Curlydogs in reply to Tortina]

I could well be wrong, not heard of either of those Drs, had seen Dr Herman’s, Dr Sabet and Dr Fisken recently at City Hospital on alternate Tuesday mornings.

[Curlydogs in reply to Tortina]

I have just been diagnosed with Myelofibrosis post ET and May need stem cell transplant, good to hear your positive outcome.

[Tortina in reply to Curlydogs]

I am almost 16 months post transplant . Have had a few ups and downs which is normal I think but I’m doing ok and moving forward .

Support post transplant at Nottingham is fantastic .

I wish you luck on your journey .

Tortina

[Curlydogs in reply to Tortina]

Thankyou so much. X

[DJK12 in reply to Curlydogs]

The list is far from comprehensive. It only doctors other patients have recommended and not an official NHS one.

[Tortina]

I believe I spoke to Dr Wadelin briefly at an MPN forum that was held in Nottingham recently .

I havnt come across her in my clinic visits .

I did think she seemed very knowledgeable and approachable at the forum meeting .

Maybe it depends what type of MPN you have as to which clinic you go to ?

As you know there are several types of MPN . However I would be surprised if Dr Wadelin would not suggest seeing another consultant if necessary .

I also believe that there does appear to be joined up thinking between the haematologists . I would discuss any concerns you have with Angela Thompson as I did at the beginning of my journey and she was very helpful .

Do you know what type of MPN you have ?

Tortina

[jodary in reply to Tortina]

Yes I have ET MPL mutation

[mhos61]

I live in Notts too. I was just ‘plodding along’ nicely with my local haemotology clinic, which in a way was okay, as my disease was/is stable.

However, I thought it was sensible to get an MPN Specialist on board. This was in part due to a sense of unease about my ET diagnosis.

The more I learned about MPNs it made me question my diagnosis, as I realised my haemagloben at diagnosis was 16.1 (female) and haematocrit was 47.9 - borderline to at least question PV.

I was put on hydrea at diagnosis due to age. This had the benefit of lowering my platelets, hgb and haematocrit, but obviously would have masked any potential PV diagnosis. Treatment would be the same for either diagnosis, but I wanted some clarity.

I eventually asked for a referral to Professor Claire Harrison at Guys to discuss my concerns and also to ask for ‘shared care’. She listened to my concerns; importantly, I had forwarded on my blood results from diagnosis for the consultation. She thought a bone marrow biopsy wasn’t necessary (hallelujah), but she requested further tests including from memory, LDH, Allele burden and erythropoietin levels. All came back normal and allele burden low at 3.67. Based on these additional tests my diagnosis is ‘likely ET’.

I am happy that I was listened to and with the absolute thoroughness of the consultation. I couldn’t have asked for more. I now have tele—consultations twice a year with Guys and twice a year with my local clinic. As I mentioned, I am stable so this suits me. I also know if I wanted to be seen face to face that option is there too.

Maybe ‘shared care’ might work for you. A consultation with an MPN Specialist is essential if you feel things are changing.

[jodary in reply to mhos61]

Did you go to Nottingham City Hospital haematology clinic and were they agreeable about a referral ? Thank you for your reply

[mhos61 in reply to jodary]

No, I wasn’t at that hospital. I’m actually at one in South Yorkshire.

They were fine with the referral because it was a “locum haemotologist” at the time. I did the request by email (asked specialist nurse for email address) and worded it in a polite but strong advocating manner. I did have to chase it up, but nothing was going to stop me at that stage.

Some ask their GP!

[jodary in reply to mhos61]

I will ask GP I’m not sure if other hospitals will accept you but it’s worth a try thank you

[Mishie14 in reply to mhos61]

thank you for sharing this part of your journey. Excellent job being a strong, positive advocate for your well being. I appreciate being able to learn from others. Stay safe!