This is really a question for my fellow UK MPNers, but am happy to receive anyone’s comments.
I have ET, diagnosed 2019, and I’m finding myself questioning the competency of my local hospital haematology team.
I had a recent consultation where I asked what priority group I fall in for the covid vaccine, and was told I do not fall within any of the groups and will be vaccinated in line with my age group (I’m 38, so this would leave me til one of the very last).
I’ve noticed that some of you are seen by the team at Guys, although you don’t live in London. Can I ask how you were able to achieve the care of, who I believe are, the leading MPN specialists?
Many thanks in advance ☺️
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Rae25
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Morning. I was diagnosed with ET seven years ago when I was 43. Over the last seven years, as I’m sure many others have discovered, how few people understand what we have and this includes haematology departments in hospitals. To be fair they aren’t specialists in MPNs.
You do need to find/get referred to someone who has an understanding of ET and MPNs and that may end up being at another hospital.
As for what category we are in for the vaccine it is most definitely number 4. It is a recent change so they may not be aware.
Have a look at the info on MPN Voice, Blood Cancer UK and the BSH websites. All will clearly state this and it does need to be raised with the people looking after you. Your GP can actually help you with this too, mine did. I’ve already had my first vaccine jab and am now waiting for my second dose.
Hi Rae. When you’ve found a specialist you think you’d like to see you can speak to your GP and ask to be referred. Every patient has choice in the NHS on where they’d like to be seen.
Hi, My hospital experience sounds similar to yours. I found a list of MPN specialists using Google, and contacted the nearest one, he was happy to see me but I had to get a letter of referral from the haematologist. He did oblige but I got the impression he wasn't happy and there was an awkward telephone conversation where I felt told off.
Anyway, saw the specialist who rediagnosed me from ET to PV and changed the medication from hydrea to interferon. He would write to my haematologist with these recommendations and unfortunately for me said he was referring me back to the haematologist for future clinics. It was recently, September, so in pandemic and more practical but I was disappointed.
I still have not had my meds changed because apparently it's waiting for approval and my telephone consultations with the hospital are very brief and frustrating.
That's where I am at the moment. My thoughts for you are definitely find a specialist and get the best advice and care you can.
BTW my haematologist also says I am not in high risk category for covid vaccination.
It is certainly frustrating. I’m not a fan of the telephone consultations as I feel they’re trying to rush you off as quick as possible. My last two haven’t even been with my usual consultant, so I don’t even know who I’ve been speaking to!
I was living in Scotland when I asked my Haematogist for a referral to see Prof Harrison. She was more than happy to arrange this for me as she didn’t feel she was an MPN specialist. I have seen Claire Harrison once a year for the past 4 or 5 years.
I’d love to be seen by Claire Harrison. I’ve seen her speak on the webinars and I feel she’s really knowledgeable and trustworthy. I hope I can get a referral too.
Hi,I've been through the same thing myself with my hemo refusing to accept ET = extremely vulnerable. Fortunately my GP did recognise it.
It might be worthwhile talking to your GP and tell him you have a blood Cancer (not many GPs recognise MPNs) which is on the government list of qualifying diseases, and ask him / her to issue a letter.
I share your frustration, but good luck and stay safe
Thank you John. I did give my GP a call and he said I was in group 6, not 4, which is still better than the haemos opinion! I did feel like he thought I was trying my luck to get a higher group though 😕 I need to call them tomorrow about an unrelated issue with my ear, so hopefully I can reopen the conversation. It’s really tiring having to fight for what we know should be the way.
Hi,I sent an email directly to the MPN specialist's secretary , and received a reply he was happy to see me but to get a letter of referral from the haematologist. I then contacted the haematologist's secretary by telephone for the referral letter. That's when the haematologist rang me and we had the awkward conversation I mentioned in my earlier post. I explained I would like a second opinion about my symptoms namely the pruritus because he said the pruritus was not caused by ET because I suffered with it prior to my platelets being high. So eventually got my letter and saw MPN specialist who spotted my RBC had always been high and rediagnosed PV and aquagenic pruritus as a a symptom.
The dermatologist rang me some weeks later and stated he also thought the pruritus was definitely caused by my blood disorder.
So this is a long winded way of me suggesting if the GP is not very helpful contact an MPN specialist directly even if like me you only get the one off second opinion.
HiI am under Guys but I actually live in Liverpool so usually visit twice a year and in between visit a more local hospital. I am under professor Harrison who’s is fantastic and really knows her stuff. I was sent to her because as you said they are the people with the the best knowledge but with the pandemic I’ve obviously not been but they call me usually when my appointment is due and I’m very happy with that. My local hospital just take my blood but don’t have much knowledge with my particular mpn. I have a rare disorder and not many other people have it ( chronic neutrophilic leukaemia).
Finding MPN expert hematologists is a problem all over the world. Most hematologists do not have the KSAs to provide optimal care for MPNs due to their rarity. These docs will often fall back on the "standard protocol" - which may or may not be an appropriate choice for you. Individualized care is very important as MPNs are not monolithic diseases and we can each present quite differently.
I asked my local haematologist to refer meto Manchester Royal Infirmary as a consultant there had MPNs listed as a specialism. There has been a reshuffle since covid and I am now with the haematology nurse but that works for me currently, they work as a team and she specialises in MPNs too.
I would research the consultants at the hospitals you can get to and ask to be referred on to them by your current consultant. If nothing comes up I would go for Guys.
I am 52, have PV with a clot in my liver and initially in 2020 was informed that the deciding factor, if my MPN would push me up the list or risk category, was the medicines I was taking (if they are autoimmune suppressant). I am in Ireland and different countries have varied their advice.
The advice for me was recently changed and last week I was informed that I am moved up to a higher risk category, for the vaccine.
As members of our community find over time, and not just during Covid, each of us do best when we become our own advocate.
Seek out the information that is relevant to you and do not take the first bit of information as correct for you. While this can be frustrating the reality is what is correct for me may not be correct to your individual medical situation.
Also go easy on your medical team, remember you will likely educate them. Look at the good questions you can develop from the informed opinions you find on this forum.
Keep going, today's information may not be accurate tomorrow and it is no one fault. Medical teams are working on the front lines for the last year, trying to keep up with changing information possibly for very wide ranging types of patients.
Keep asking questions and best wishes in your journey.
Two things come to mind, ask them and share relevant information with them.
When meeting them acknowledge that your condition is not common and ask if they have encountered many patients with your condition.
Secondly, tell them you have come across a very helpful community with appropriate information (here) and that it is for clinicians as well as patients and family members.
I am lucky to attend two teams (for MPNs & Liver) in Dublin who are familiar with MPNs. Not everyone may be in a situation where they can travel great distances to particular hospitals so learn to ask questions (or get a family member to do so) of the team that is helping you. You may have read similar advice already but writing down what you want to ask beforehand is very useful. You are likely to forget sitting in front of a 'white coat' or even fatigue/brain fog etc. In time you wont need to do that.
I did the same with my GP who did not know about the condition but was happy to be directed to appropriate, digestible amounts of information.
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