Help with contact details for a specialist I can contact near rotherham I have pv jak2 positive I am only 47.

[Mandz12]

I need some help only ever been seen once by my doctor and that was over 2 years ago when diagnosed. I have bloods every 10 week. Then day after a nurse phones me and says your bloods are not bad 445 platelets count . Issue you same medication !!

[hunter5582]

Here is a list of MPN Specialists to consult. mpnforum.com/list-hem./

[Mandz12 in reply to hunter5582]

Thank you x

[shiftzz]

According to the NHS this is the range

Platelet Count Adult 140 - 400

[Ebot]

Hi there.

Your counts seem pretty low. You say you’re only 47, you saw a doctor two years ago and the nurse says ‘same medication’ every ten weeks … I’m just wondering what medication you’re on. Unless it’s just aspirin it does seem strange to be on regular meds at your age with that kind of count and no review by your haematologist. And even then two years without a review from your haem team is pretty poor practice! Who is providing your care?

[Mandz12 in reply to Ebot]

I am at Rotherham I have clopidogrel and hydroxycarbamide 500mg twice one day and 1 the next x

[Ebot in reply to Mandz12]

That’s quite a lot of HU. Did you have a super high platelet count when you were diagnosed and / or some kind of thrombotic event? Doesn’t take away from the fact (and really only underlines it) that not having a face to face review with a haematologist in two years is not acceptable. Glad you’re getting some local advice about where to go for an expert opinion - and hopefully better care. Good luck!

[Mandz12 in reply to Ebot]

I had a count of 1100 red platelets and jak 2 positive. I asked about seeing consultant and they said your on list for phone results. X

[lizzziep]

I go to Rotherham General Hospital, I see Dr Jim Taylor, I can’t say I’m particularly happy with him as I asked for a second opinion from Guys hospital, where I went recently, I think you’d be better going to Sheffield or Nottingham, there’s an MPN specialist at Nottingham.

[Mandz12 in reply to lizzziep]

Do you have contact details I go to rotherham x

[lizzziep in reply to Mandz12]

I don’t have contact details for Sheffield or Nottingham, but you can ask either haematology at Rotherham to go to a different hospital or contact your GP and ask them to refer you. I asked my GP to refer me to Professor Harrison at Guys which he did. The ‘new’ hospital need a referral either from the current hospital or GP, even though it’s all the NHS.

[Mandz12 in reply to lizzziep]

Oh right will try that then thank you xx

[Mandz12 in reply to lizzziep]

My doctor is joe Joseph

[Grendall]

Hi Mandz12

I have moved back to Rotherham earlier this year but I went under Sheffield

When I attended for my first appointment with Dr Francis, he did mention that I lived in Rotherham and wondered why I came to Sheffield. I just said I wanted to be under a City hospital where there were more specialists in this field and it was left at that….

I have only seen him the once (which was in March) and telephone calls since and not always him but I am ok with this at the moment

I do believe you have to request a transfer though, I only got the chance due to moving from Leeds, good luck x

[Jazzyb50]

I've been under the Royal Hallamshire hospital, Sheffield since 2007. Since the pandemic I've only had one face to face appointment, which I had to request. Bloods are done at the drive thru and a phone call from the consultant with results. They must prefer the phone call system as they don't appear to be going back to face to face appointments.

[Mandz12]

Thank you x