local mpn specialist

[Jillympn]

hi after reading various posts it is recommended that you see a MPN specialist

I am in Essex Chelmsford/Romford area but can’t find local specialist

[RoundTheWorld]

Hi Jilly. This list was posted a while ago but I don't know whether it is current (it mentions one in Southend). Otherwise maybe try to see one in London as a one off?

mpnforum.com/tsr-the-list/

[Jillympn in reply to RoundTheWorld]

thank you for info

[Spanelmad]

Contact Maz at mpn voice for the up to date list!You may have to travel though for myself it's Guys and I travel from West Sussex.

[Jillympn in reply to Spanelmad]

Thank you

[Fivecatsandcounting]

Hi Jilly, I have joint care with Broomfield and Guys. Guys are amazing and are currently leading my care for the past few months and at early diagnosis before that) as i am not yet responding (PV and almost a year on treatment). I have my venesections carried out there too. The nurses in Broomfield call me periodically and are lovely. I have some bloods done for them and my Interferon has so far been issued via Broomfield. Joint care works really well for me. I wouldn't want to be without Guys at the moment, I feel very safe in their hands and trust their plans for me as we step through each appointment together.

[Jillympn in reply to Fivecatsandcounting]

Thank you. recently moved to Chelmsford so still under Queens hospital Romford Will transfer to Broomfield after next appt Still need to register with new GP also Thank you for reply

[Fivecatsandcounting in reply to Jillympn]

I hope that it all goes well for you. Good luck 🤞

[Jillympn in reply to Fivecatsandcounting]

Thank you

You too

[Oscarsboy]

I would truly suggest you ask for a referral to Professor Claire Harrison at Guys and St Thomas's in London. Although not exactly local, it's fairly easy into London from where you live. Im Just on the other side of the river to you in Kent, and under the haematology unit at Darent and see a consultant there. However I have had two appointments with professor Harrison and they liaise together. I'm sure it would be very helpful to initially be able to see her or one of her team, who will be able to advise you moving forwards. I hope this helps.

[Jillympn in reply to Oscarsboy]

Thank you

[william-Indo]

Just check to posted by Hunter.

It has complete MPN Specialist in the world.

Cheers

[RubyTea]

Hello Jilly, I have ET and am jak2 positive. I found navigating the system to get to see a MPN specialist very confusing and frustrating as I didn’t know where to begin and was going round in circles. My GP didn’t really understand the significance, and my hospital care has been poor. The good news is it is possible to get a referral. For me, I knew that I wanted to see someone at St Thomas and Guys as I have read a lot about their work and seen Professor Claire Harrison on a couple of MPN Voice online forums. I posted my frustration on this forum (my first post) and the wonderful community on here gave me the encouragement to give it a go and try and see a MPN specialist. So in the end I booked an appointment with my GP and asked her to refer me to St Thomas and Guys. I had to convince her to try as she really did not think it was possible but she did and within a week I had an appointment booked in for September directly with St Thomas /Guys. I am so grateful I did it as I am starting to see or notice things and my local hametology team at the hospital have been very difficult to reach / speak to. Plus I just don’t have the confidence in them as they really do not seem to understand or try to. I have been very scared of all the unknowns since diagnosis so for me it had been a huge relief knowing that I now have access to a MPN specialist team who I can speak to in September and can take it from there. I would say have a look at the MPN list and ask your GP to refer you to one that might work for you. If your GP says it is not possible to refer then suggest to them it is possible to try. I did have to convince her to try, but so glad I did as it worked. I hope very much you can find the care that you need. I think it’s so important to do as these are rare health conditions and accessing specialists is so important to managing the mind as much as anything else. Wishing you ease with your search.

[artydutch]

nearest is Cambridge or Guys in London. Good luck!

[Plantfervour9]

Hello Jilly,

We live in the Chelmsford area and my husband had PV then later MF. He was under the care of Broomfield Hospital for venesections and some blood tests, but for the greater part Professor Claire Harrison and her team at Guys/St Thomas’. It is a relief when you can access knowledge and care from a specialist team of people who truly understand your health condition. I would urge you to get that referral and it should be relatively straightforward from where you live.

[BloodyMPNS]

Hi Jilly. I am under the team at Broomfield for PV. I also go to Guys every 6 months so I feel like I have the best of both worlds. Mel x

[jenster68]

Hi Jilly. I have shared care (watch and wait for ET triple negative age 55). I see Dr Kotucek at Broomfield in October and Prof Harrison’s team in April each year. Dr Kotucek was very happy to refer to me to Guy’s - he has worked with Prof Harrison in the past. This works super well for me and I feel in very good hands.

[PVKween]

Hi Jilly, I’m based in Hornchurch so attend Queens Hospital Romford. My hematologist isn’t on that list, however they have looked after me very well. Let me know if you want more details x

[LFCLove]

Hi Jilly,

My local Consultant haematologist is Dr Padayatty @ Colchester Hospital who originally referred me to Dr Harrisons team @ Guys for a second opinion.

Saw DrJennifer O’Sullivan who was excellent. She agreed that my best outcome was for a Stem cell transplant.

I requested a transfer to Cambridge as the distance is the same for us but a lot less stressful! (London traffic)

The team there are excellent to led by Dr Charles Crawley who is so good and has explained everything so clearly.

I hope you find a specialist who is right for you and hopefully near!

🤓

[MaggieSylvie]

High Jilly, I'm in Essex as well and I only know that it would be a bit of a trek to get to a specialist. I believe Cambridge has one, but I've seen that RoundTheWorld has heard of one in Southend, which means you might have a day out at the same time - if that floats your boat. I do have a friend in that area whose wife has just developed an MPN and she seems to be going for tests and blood several times a week, so perhaps she is lucky enough to be close to a specialist. She has to keep going back, so I don't think the treatment she's getting is helping.

Just thought I'd say Hi😊 because we are flung far and wide, with differing variants.

[deerstart]

Hi Jilly, I’m near Chelmsford and diagnosed with ET (CALR type2) late last year. My haem consultant Dr Kotoucek at Broomfield isn’t an MPN specialist but is well clued up and pointed me in the direction of MPN Voice and this forum. I don’t have shared care though he consulted Claire Harrison at Guys when necessary.

[Jillympn in reply to deerstart]

Thank you for info

[DeKa]

It's important to find an MPN specialist because they'll know how to work collaboratively with other experts/hosps, particularly if diagnosis was late & there are collateral blood clots.

An MPN specialist can also 'save you' from hare-brained schemes. Eg, my loved one (with PV) was HOUNDED to have an 85% volume partial splenic embolization on his huge 23cm spleen at Chelsea & Westminster Hosp NHS Trust. Almost killed him. Avoid it! Gastroenterology consultant wouldn't accept that MPNs were a form of blood cancer in Jun23.

My loved one transferred to Guy's Hosp (the best for MPNs) who work well with King's College Hosp (the best for hepatology). After 4 years he's receiving excellent treatment. Left where he was - and without advice from Blood Cancer UK and this MPN voice forum (Maz & Hunter) - he would be dead by now.

Don't be scared to be bold.