Just wondering how others have managed to get referred to an MPN specialist rather than a haematologist?
I'm based near Middlesbrough and whilst I thought my care was fine initially, I haven't seen a consultant since Covid and I now just get a phone call every couple of months of a haematology nurse. Any changes that I mention are just brushed aside as nothing to do with PV and obviously nobody can check for enlargement of my spleen over the phone, something which the consultant used to do at each visit.
I've looked at the list of specialists that someone else provided and I think that the nearest specialists are in either in Carlisle or Manchester, but how do I get referred?
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hello Transporter, your will need to ask your GP to refer you to another hospital. It might help to discuss your concerns with your haematology nurse, and ask if they will be getting back to in-person appointments in the near future. Best wishes, Maz
Thanks for replying. I will give my GP a try, but it's virtually impossible to get an appointment with them at the moment and they don't seem very keen on referring patients to other hospitals. It wasn't easy persuading them to change me from Stockton to Middlesbrough.
Hi Mazcd. As MPN is a rare disease, how can the GP have the knowledge to refer him to an MPN expert? I agree the GP has an imporant part in referal but to whom?
Hi Onbekend, as Transporter has identified 2 possible hospitals from a list the GP can then make the referral to the preferred hospital and consultant, and referrals to hospital consultants are made by the GP, you can ask your haematologist to refer you to another consultant and hospital and they may do this, but generally it is the GP. Most hospital websites will have details for all their staff with a bio about them, often with details of when they qualified and where they trained and their special interests, i.e. MPNs, so you can do some research before speaking to your GP about a referral. Best wishes, Maz
I had the same trouble as you. My haem. team took no notice of my increasing foot neuropathy symptoms which eventually became erythyromelalgia. Four different doctors told me it had nothing to do with my diagnosis or treatment in hydrea. I am in Northern Ireland and could not find the name of an MPN specialist here. I decided to email Professor Claire Harrison at Guys hospital. She very kindly responded by saying she thought I was right and she also gave me the name of a MPN specialist at Belfast City Hospital. I emailed her and she telephoned me and said she would be very pleased to see me and she would make it right with my haem. team. I saw her last week and she was most helpful and answered any questions I had. She is going to review me in six months and in the meantime I will continue with the usual team. I had been unable to get answers to any questions and even my Macmillan nurse had no answers for any of my questions. When I was diagnosed I was told very little, I have ET/PV and have picked up a lot of info on this site.It is your life and just be cheeky like me and advocate for yourself by contacting your nearest specialist.
P.S. to my previous post. I forgot to say my GP is pretty useless and not a bit interested in my diagnosis and it is almost impossible to even get a phone consult with her. I even had to spell the diagnosis out for her!
Hello Transporter. I'm afraid l dont have the answer for you but lm in a similar position so very interested in your post. From your list is there an MPN Specialist around Cambs /Lincs? I feel so unsupported by the system.
Hi Transporter. I see Prof Tim Sommervaille at the Christie. If u cant see GP, perhaps u could ring Christie's and see us you could self refer under the circumstances. All the best
Hi Transporter. You are definitely entitled to a second opinion. As people here all say, you have to be your own advocate.Be firm. Be polite. But be persistent.
I actually got my referral to Guy's last year by having a row with the haemo and then throwing a hissy fit with the GP surgery, but I truly wouldn't recommend that approach.
Regular advice from my mother suddenly springs to mind:
<<Be cool, calm and collected, with a concentrated column of colossal courage xdx
I definitely got a GP referral out of area, Transporter, so there is clearly a way it can be done. The local haemo consultant has less of a clue about MPNs than the onco nurse I had been seeing in Surrey before I moved West. And she didn’t know much.
And if you can make the trip, at least for an initial appointment, I can't recommend Guy's highly enough.
I recently asked my Haemo if she could refer me to an MPN specialist which she duly and quite happily did. The specialist looked at my case and answered my questions. I will continue my treatment with my Haemo going forward.
Yes, although my MPN care is totally under Guy's, they still copy in the local haemo, as well as me, when they write to my GP.Don't forget to make sure you get copied in on everything. That too is your right.xdx
Hi Transporter, I asked my haematologist to refer me to a MPN specialist and he did so without question! Best wishes and good luck…I live in Darlington
Hi Fairbank, I live in Newcastle and I am under the care of the RVI, I was wondering which MPN specialist you see. I had a couple of telephone appointments with Dr Oaks from Carlisle who is the MPN specialist but apparently he was only 'helping out ' for a while. So many people on this forum are seen by Claire Harrison at Guys and I often wonder how she copes with the volume of referrals from all over the country. Thanks in advance.
Hi, yes I was referred to Guys and did see Prof Harrison and wondered how she copes!She advises my local haematologist but I haven’t as yet had another appointment with him but have had a telephone appt. with one of her team. It’s early days yet to comment on how it works as it has just been 4 months since I was referred. However it was really good to see Clair Harrison, such a lovely person.
Thanks for your response. I feel a bit uncomfortable asking for a referral to Claire Harrison, it feels like I am questioning the doctors knowledge and ability to manage my condition but at the same time we only get one shot at this and I want it to be right. I wonder if my current providers are able to send all of my blood results and BMB to Claire without me having to travel to see her initially, have you any experience of this?
Hi, the best way I believe is to ask your present consultant or GP.I think some people have gone directly to a specialist and asked to be seen. Good luck.
Problem is, my consultant has changed two or three times since the start of the pandemic and I don't even know who it is now as I've never met them. I just get the phone consultations with a nurse who brushes aside any new symptoms I mention as being nothing to do with my PV.
Not knowing which doctor of all hematologists is an MPN expert is a problem in the Netherlands too. That is why I made a website with some well know MPN experts. "kieseenervarenmpnarts.nl" translated "choose an experienced MPN doctor". Lots of patients did a second opinion, or moved over to an expert.
Now working together with the Dutch MPN patientfoundation to solve this problem and give every patient the oportunity to find an MPN expert nearby.
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