Specialist MPN Consultant

[Rebus12]

Having being diagnosed recently with Essential Thrombocythaemia, I am struggling to find haematologists who have a specialist knowledge and interest in my condition. I live in the East Midlands and ask if anyone living with this condition can recommend a consultant/ hospital?

Thank you,

M

[hunter5582]

Here is a list of MPN specialists. mpnforum.com/list-hem./

[Rebus12 in reply to hunter5582]

Thank you Hunter.

[mhos61]

East Midlands covers quite a few counties. Not sure how far you’re willing to travel, but I’ve heard there’s a good team dedicated to MPNs at Leicester.

I live in Notts, but receive ‘shared care’ with my local hospital and Guys in London. Having an MPN Specialist team involved in my care gives me peace of mind.

[Rebus12 in reply to mhos61]

Thank you. I am in Lincolnshire but my GP etc is in Nottinghamshire. It's interesting to note your shared care with Guys. Did you have to request it?

M

[mhos61 in reply to Rebus12]

Yes, you do have to be referred. See my reply to Arnoldthecat in how I approached this.

Ask yourself would you prefer ‘shared care’ or a complete transfer. Personally, if I had lived closer to London I would have made a complete transfer; however, distance was the deciding factor for me to opt for ‘shared care.’ It works really well for me. My disease is stable, therefore I choose to have tele-consultations with Guys safe in the knowledge if I wanted a face to face appointment it could be arranged.

[Nickthedevil]

Depending where you are in the East Midlands, if Solihull is not too far then I highly recommend Dr Joanne Ewing at Solihull hospital. I drive 30 miles each way in order to see her rather than see the haematologist at my local hospital.

[Rebus12 in reply to Nickthedevil]

Thank you. Unfortunately Birmingham is just too far! I am in Lincolnshire but medical treatment comes under Nottinghamshire. Someone suggested Leicester which could be an option, but thanks again for replying.

[gilded]

Hello Rebus 12. If you can travel to London, I recommend the highly regarded Dr Ian Gabriel at Chelsea & Westminster Hospital.

[Rebus12 in reply to gilded]

Thank you. Initially I thought that London would be too far, but the high speed eastern train line is quick and usually on time! I will look into it. Again thank you.

[hall2]

I am with the team at Leicester Royal and have found them very good so far.

[Rebus12 in reply to hall2]

Thank you hall2. I have had another recommendation for Leicester and it is not too far from me. I hope your treatment continues to go well.

M

[ConniesDad]

Hi, if you’re in the north of Lincolnshire, I would recommend checking out the Royal Hallamshire Hospital in Sheffield. I see Dr Sebastian Francis there and he is absolutely excellent. I’ve also seen other consultants too, who have all been great. If the travel isn’t too much, it’s worth considering. Garry

[Rebus12 in reply to ConniesDad]

Thanks. I hadn't thought about going north but Sheffield isn't too far.One of my worries is seeing a different doctor each time I visit. I hope to be able to see the same doctor and get to know their thoughts on my condition. Different doctors seem to have different ideas on treatment!

[ConniesDad in reply to Rebus12]

Since my diagnosis in April 2020, I have only ever seen Dr Francis apart from on one occasion. Also when I was an inpatient during my stem cell transplant, there’s a team on the ward who care for the patients, but I saw Dr Francis 2-3 times per week then

[jacquelineruth2000]

Hi I live in Nottinghamshire and go to the haematology department at Nottingham City Hospital. I see Fran Wadelin who is extremely knowledgeable

[Rebus12 in reply to jacquelineruth2000]

Hi, thanks. Nottingham City, I think Hunter has this on his list too. Is this department linked to QMC do you know?

M

[jacquelineruth2000]

Hi yes it is QMC and City hospital are part of the same trust NUH. I’ve been under them since Jan 22 they also have a specialist nurse and she runs a monthly patient support group. In fact there is a MPN conference coming up in Nottingham in July if you’re interested

[Rebus12 in reply to jacquelineruth2000]

Hi, thanks. I am hoping to come to the conference but 2 different dates seem to be advertised. I'm not sure if its going to be in Nottingham or Birmingham. I live in Lincolnshire just across the Notts/Lincs border near Collingham, Newark so Nottingham would suit me better.

I will keep a look out but if you see any information please let me know.

Maureen

[jacquelineruth2000]

Hi as far as I know it’s Monday 17th July and being held at the Mercure Hotel in Nottingham which is just down the road from City Hospital. I live in Mansfield so we’re not far apart 😊

[SRH55]

Hi, I’m in Leicester & go to the Leicester Royal Infirmary, for my care, I believe there are 2 consultants on the list Hunter has sent. Good luck.

[Rebus12 in reply to SRH55]

Thank you. Leicester has definitely been mentioned. I will look into travelling times.

[AndyT]

I’ve been under the care of the Clinical Haematology team at Leicester Royal Infirmary for over 15 years and can thoroughly recommend them. They have several MPN specialists on the team and a large clinic of MPN patients.

There’s also a specialist MPN team at Nottingham City Hospital if that’s closer for you.