MPN expert?

[lizzziep]

I’ve decided to take the bull by the horns and contact an MPN expert to see their opinion on my case, the obvious one is Prof Harrison. Can anyone tell me if I can just email her or do I have to go through my haematologist? Also does anyone have contact details for her? Please and thank you.

[April-May]

I contacted Prof Harrison at Guys Hospital London by requesting a referral via my doctor, though you probably can via your haematologist. Because of Covid, I only have had telephone consultations but I’m sure you could go there if you are able to. You won’t regret it. She, and her team are amazingly knowledgeable and helpful. Good luck!

[Cat_lady52]

Her email address is [e-mail] (I've never emailed her, so don't know if it works)I've never seen her or anyone at guys, so don't know how you go about seeing her but you could always send her an email and ask / explain your situation.

Take care.

[lizzziep in reply to Cat_lady52]

Thank you, I’ll give it a go!

[mhos61]

Well done Lizzie, you’re definitely doing the right thing.

You’ll still have to be referred by your haematologist or GP. But send the email anyway to Claire Harrison’s secretary (email address below) asking for a second opinion. They’ll accept you, but they will ask for a referral.

Then go back to your haematologist and explain that you’ve requested a consultation with Guys, as there are changes in your condition, and it’s in your best interest going forward to consult with a MPN Specialist and could they refer you. They can’t exactly refuse!

I receive ‘shared care’ with Guys and my local hospital. It works exceptionally well.

[e-mail]

[lizzziep in reply to mhos61]

Thank you! I’ve sent an email.

[mhos61 in reply to lizzziep]

👍

[katiewalsh]

congrats on your decision! I’m really happy for you & truly bravo for doing this. Katie

[Fremia7]

My Gp wouldn’t refer me, but my Haemo was happy to.

Like others, I now also receive shared care which works well. Good luck

[Exeter21]

Yes contact Guys they will give you details . I did same & she rings me every few months & has sorted my treatment now . Excellent knowledge. My Drs had not even heard of ET & Haemotology were good but once my medication reacted I got nowhere with what next. Happy I got a consultation by phone & now on Interferon. MPN advise Haemotology which is why some of them take unbridgeable at us contacting MPN.

But your health depends on best options in life not to just suffer when other options . Julia 👍

[ainslie]

One thing to consider is it can be beneficial if CH (or whoever the expert is) can see the Biopsy slides and not just the printed report. Some Haems can interpret the slides quite differently. One example is I think it’s one of the Paul’s on here (perhaps he can confirm) had a biopsy and if I remember correctly his normal Haem reported PV but on showing his slides to CH she interpreted some indication of MF , I hope I got that the right way round. I am going to see a expert Haem in Oct and he said he would prefer to see the slides if poss.