Good morning all,
I would like to arrange an appointment with a MPN specialist to get a second opinion on my treatment plan to find out what changes can be made to control my symptoms.
I’m not aware of the process and am hoping for some advice.
Do I ask my current haematologist or GP to refer me or do I make direct contact and self-refer. Ideally, I’d like to speak with Dr Harrison as she is specialised in MPNs and highly recommended by others in the community.
Thanks.
Nadine
I am not an expert regarding how the NHS works in the UK. I hope some others with greater expertise will weigh in. What is true is that in all healthcare systems assertive patients receive higher quality care. passive patients do not. Sometimes you have to work through the system. Sometimes you have to work around it. Others on this forum have been referred directly to a MPN Specialist by one of their existing providers. Others have reported contacting the MPN Specialist directly to get an agreement to be seen and taking that back to their current care team. The bottom line is that it is up to you to make this happen however it needs to be done.
Wishing you success ASAP.
Thank you. Reading the responses on here, I think the best way forward is to speak with my current haematologist and ask for a referral. I think it’s also only fair for him to know and also important as all can then work together.
Hello, while I do not live in the UK, but rather in the USA, I want to share that with the advice and support of people o this site I transferred to an MPN specialist in my area. My appointment was today and I can tell you it was night and day difference in the information given me. I've had ET since fall 2019 and been on Hu all this time. Lately, I've expereinced more difficult symptoms and my previous to today doctor barely would discuss anything with me. In fact she scheduled me to see her PA for the next visit. But fortunately, someone from this site provided a name of an MPN specialist who gave me more information today than I received all together in the past 2 and a half years. So, I encourage you to keep advocating for yourself until you feel well cared for. So, you might look on this site for their list of MPN specialists and ask if anyone lives in your area might have a doc they think highly of. Best of luck!
Thank you so much. Your story just shows how important it is to have the right person to get the right care. Glad it worked out well for you.
Hi I live in the uk and I tried the direct path but was told to get my GP or haematologist to refer me still haven’t quite made it but working on it.
Have you asked Maz? Good luck
Hi, no I haven’t asked Maz, I wasn’t aware I could? I get joint pain and what feels like circulation pain also fatigue but my Haemo and GP don’t recognise it goes with the PV and ET Jak2 + that I have but have recently been down the rheumatic route and no immflamuation showing up in scans or bloods 🤷♀️
Sounds as if a specialist could help- contact Maz, she will give you a list of specialists- go back to your GP and request a referral to the one of your choice. I think that’s the procedure. Maz will set you straight. Good luck let us know how you get on
Thanks so much for your help! This is my gut feeling that I need a specialist help, I know that I want to see Dr Clare Harrison at Guys hospital my Gp won’t refer me and because I’ve only been diagnosed since Dec 2020 my haemo thinks is too soon and has been checking out the rheumatic route, but they don’t seem to take on board I’ve been struggling with this for 5 years which I have told them.
I can’t believe they refuse to refer you. That’s disgusting!!!! Definitely speak to Maz for advice. You can contact her via MPN voice.
Where do you live?
That’s similar to what I’ve been told. I don’t quite understand why symptoms such as fatigue and pain in limbs are not recognised by doctors as MPN related. Lots of people with the condition suffer from it. I’m currently going through a lot of tests with my GP to “proof” that there’s nothing else wrong with me. So far, this actually seems to be the case which is certainly good to know.
Agree with Mustang. My Haem covered the full range of blood disorders and only had five with Myelofibrosis. She didn’t have anything planned for me ( it was eleven years ago and some of today’s drugs didn’t exist) so we agreed that a second opinion from an MPN specialist was appropriate. She referred me and that referral was the first step towards my SCT. Chris
Hiya Hun I got a second opinion with st guys I was at Birmingham but after years my normal heamo left the new one called me in and told me they could do nothing for me and I had 2 years to live I had thought sct would be option they refused me a second opinion so I went to my gp who referred me to st guys and they are now my doctors you can ask either your gp or heamo it can be difficult especially if you live quite far if your docs don’t agree but ultimately it’s your right hope this helps and good luck
That’s brilliant outcome for you. How are you doing are you going to have a SCT?
Iam now under donal maclornan at st guys I had a lot of tests and they have agreed to a sct as iam only 36 I was diagnosed at 24 unfortunately it won’t be straightforward as I have portal vein thrombosis and chronic liver disease through mf complications so it’s going be very high risk but iam grateful for the chance to try hope is hope
Oh so pleased for you although your head must be in a huge whirl. Please write about your journey. I ‘m wishing you all the best
It wouldn’t surprise me if I had something like this very bad varicous veins getting worse by the day
I think you have every right to ask your doctor to refer you for a second opinion. I think Maz ( if I’ll based)will give you a list of specialists. Good luck
Here is one of the MPN Specialist lists that folks have referred to.mpnforum.com/list-hem./
Thank you hunter. My haematologist is actually on the list, but nevertheless, I wish to have a second opinion. I now only have to be brave enough to discuss that with him 😋
It really is not a personal thing. Seeking a second opinion is a routine part of medical care. I have never had a doc have a problem with it. Any physician that would put their own ego ahead of your optimal care should not be on your care team. Good doctors value different perspectives and are themselves willing to consult with their colleagues. This is not about whether you like or trust your hematologist. it is about getting a diversity of opinion and thought. That is always a good thing. I believe you should be able to get a referral from your GP or the hematologist. go with whichever you feel the most comfortable.
You are completely right with what you’re saying. Thanks for that. I will have that conversation but just can’t help it feeling a bit weird about it. If my haematologist was a complete idiot, I’d not have an issue at all 😋
Hi Nay123,Hope you get your referral and have a chance to alleviate your symptoms.
I have also been wanting to see a specialist, not sure how everything works once you see a mpn specialist, maybe someone can help ? Do they need to work jointly with local haematologists ? Or with GP. How do people get their meds (currently on Pegasys). I guess I need to pluck up the courage to speak to my GP ( worry about offending haematologist here)
Good luck Nay
Hi Nellin, I have the same issue that I feel a bit awkward speaking with my haematologist about a referral. Not quite sure yet how to do it...
The way I work it is that I have a local hematologist who is a wonderful physician, but not a MPN Specialist. He handles all of my ongoing care. I also see a MPN Specialist who is about 2 hours away. The MPN Specialist consults with me and my regular hematologist about my care plan. This arrangement works great. I do discuss things in detail with both docs. Both are wonderful at listening, answering questions and respectful of my right to decide what my care plan will be. I also listen to what my docs say and value their expertise.
Gathering information from multiple sources, including a MPN Specialist, is in your best interests. It should not be any big deal at all for your care team to facilitate this. It is the best way to ensure high quality MPN care.
Hi All,
Thank you so much for all your responses. Sorry for the late reply but I’ve been feeling unwell the last few days. I still don’t have the energy to respond to all of you but will definitely do so asap. Just wanted to say that I appreciate your posts.
I’ve been having bad fatigue with pain in my arms and legs for 3 weeks now. I doubt I’ll be able to return to work tomorrow. Furthermore, my mental health is deteriorating which is not surprising (or is it the Interferon??). I’m really struggling guys, I don’t know what to do. This set back is hitting me hard as I felt more or less well for 2.5 months and now this again. It’s so difficult to cope and I’m worried about not being able to do my job anymore, or any job for that matter. And the financial impact this already has due to constant sickness absence.
I really need to see someone who is taking my symptoms seriously and helps me. I’m currently in contact with my GP who sent me for blood tests with a long list of things to be checked. All more or less ok. Except from my MPN, I seem to be healthy. I’m referred to a Chronic Fatigue Clinic, maybe they can help. I also started counselling as I’m struggling to keep strong. My haematologist is on the list circulating here as MPN specialist, but I still want a 2nd opinion.
The thing that really drives me crazy is not to know where these symptoms are coming from. I know fatigue is a symptom of MPN or side effect of Interferon, but why? What happens in the body causing it?
Oh, seems like this had to come out... Thanks in advance for reading.
Nadine
Hello Nadine, you do sound as if it is a difficult time for you at the moment, I’m glad you have some help around you, the Gp, Chronic Fatigue Clinic and Counselling. I think sometimes symptoms can feel like being on a roller coaster for some of us. I try and keep things in the day and even break it down to thirty minute mini tasks. You will find your way of getting past this, let people help you and be kind to yourself.Kind thoughts and wishes
Nellin
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