Just a little rant..I’ve just had my 3 monthly telephone call with a haematologist ( different one each time). HCT still raised so Hydroxy is being increased to every day rather than weekdays. I mention the usual list of symptoms including poor sleep due to bone pain etc and was gas lighted by being told that was not a recognised symptom, 3 months ago breathlessness was a problem and remains so and was told that had nothing to do with MPN. I kept my cool and requested a referral to Prof Harrison and the Dr said that was them to decide as THEY only asked for a second opinion if they have concerns. I became a little more forceful and said I was formally requesting this . I’m not usually demanding and this has left me feeling quite anxious as if I’ve really stepped out of line!Arrgh!
Referral to a specialist : Just a little rant..I... - MPN Voice
Referral to a specialist
You are entitled to a large rant. It is unacceptable to see a different hematologist every time you have an appointment. that precludes forming a healthy doctor-patient relationship. It is also unacceptable to continue seeing providers who apparently know so little about MPNs. As you already know, bone pain and insomnia are both well known MPN symptoms. You also know that PV can cause shortness of breath. Regarding the dyspnea, a note of caution is in order. If it began after you started on the hydroxycarbamide, then this may be an adverse effect. Dyspnea is a common adverse effect. Moreover, there is a risk of hydroxycarbamide causing interstitial lung disease that requires dyspnea to be taken seriously when it occurs.
You most definitely did not step out of line. You asserted your right to choose your provider and seek competent medical care. It is not up to them to decide whether you need a consultation with a MPN expert provider. It is up to you. In fact, it is your prerogative to dismiss the current care team entirely and seek care elsewhere. Inadequate care can only continue when it is tolerated.
Wishing you success moving forward.
I think I asked my GP to wrote to Guys. Do you have a good relationship with them? Maybe ask?Also I find the heamatology nurses great when I feel frustrated. They always have time to listen.. no need for appointment.
You are definitely entitled to second opinion . And it's worth persisting. Guys have an excellent team .
Good luck
Let us know how you get on
Very sorry about your situation. As Hunter said, it's probably time for a change. I've been on HU for about 4 years and it is not a drug to be taken lightly. Your symptoms need to be acknowledged and your treatment plan modified.
My first MPN doctor was the head of the department of oncology. After seeing him for almost 2 years he dropped the ball and I suffered for over 2 months. I replaced him with another MPN specialist who adjusted my treatment plan and I've been doing great since. Definitely the best move I've made in my 5 years of dealing with pv. Good luck moving forward
Putting aside the awful experience you have just had, I would say the breathlessness is something you also need to discuss with your GP. For too long I accepted it as a likely Mpn symptom or medication side affect as I first noticed it around the time of my Mpn diagnosis and starting HU.
It turned out I have a heart condition and it was my GP who initially referred me for testing that eventually identified the cause. So far as Mpn, respiratory and cardiology teams could tell it had no apparent connection with my Mpn or HU. I’m not an obvious candidate for heart problems so it was a surprise.
Hello Janbu, very sorry to read about your experience. I had very similar experience. It’s so very frustrating. My GP had to be persuaded to refer me as they didn’t think they could. I had had enough of the hospital haematologists too (who continue to be poor). My GP meeting was not as straightforward as I had hoped but I stuck to my plans and the GP did refer me to Guys. I got an appointment set up within a week. I am due to have my first appointment with the Guys team in two weeks. It’s so worth the push. It’s a worry lifted as I know I will at last have the opportunity to really explain symptoms I am noticing and perhaps be listened to. Wishing you the very best, go for it, GPs can refer to hospitals outside of their local boundaries for MPN specialist services even if they think they can’t. With kindness
I wasn’t happy with my local haematology team, I asked several times to be referred to Guys they kept saying they’d write but never did. Eventually phoned my GP on a Friday, it was a locum, very nice, very sympathetic, he emailed Guys immediately and I got a reply from Guys on the Monday! Since being in touch with Guys my local team have stepped up slightly, still not brilliant. I’m still having phone consultations with Guys, had one on Monday and they were getting in touch with my local team to recommend changing to Momelitinib.
Hi Janbu.I have had a very similar experience for almost 3 years. My consultant consistently saying no side effects, nothing to do with hydroxy, when I tried to explain my many effects since taking it for ET. I have only just spoken up and seeing new consultant 5th Sept for review. This followed a tel appt with nurse out of area who said there's no way I should have been putting up with this for so long. You have not stepped out of line..you have every right ..this is a chronic situation and we need quality of life! My platelets are within normal range and they refuse to reduce my 1000mg daily dosage. The first time I felt listened to was speaking to the new nurse who was brilliant and so empathetic. She also said they should be sorting referral to MPN specialist..other consultant had told me not possible on more than one occasion! Good luck with the rest of your journey 🙏🤞
stick to your guns. My haem was useless so it was my GP who arranged my 2nd opinion.
Good luck 🤞
Honestly Janbu I'm proud of you. Whilst we put our trust in others, to care for us, we must also trust ourselves to know when things are not right. You were right to ask for a 2nd opinion and there's patient choice. You can choose which hospital you want for treatment.
I've been lucky, so far with my Haematologist but thanks to the people,on this forum, I am fully aware, I need to advocate for myself and, if needed ask to see a MPN specialist. My haematologist is very interested in PV and we share articles etc, on out face to face meeting. My education of the condition started here on the forum, thanks all. My Haematologist has consulted with Guys, on my care and I'm on Peginterferon, which in 7 months has all my levels, in normal range.
Keep us all posted, on your journey, and don't leave ot too long before checking your referral has been sent 😉
I was receiving 3 monthly phone calls by a different Locum every time as well. I found my nearest MPN specialist from the list on this site and my GP referred me and my care was transferred.
I am very pleased with my care now and all my appts are face to face.
I would definitely recommend you transfer for peace of mind as well. Good luck😊
Greetings from the deep south here in Alabama. Sorry to hear that the Doctor's there think you can't think for yourself and having the arrogant approach saying bone pain is not a symptom of an MPN.Makes me want to growl. I can't imagine how you feel. Pain ,mostly in the long bones and joints was one of the side effects of what we have just reading a little bit about MPN'S.I also am 70 and deal with pain from scoliosis that started 8 years ago. Do not let up on getting the best care. I take it you are in the UK and I don't know how the Healthcare system works there. With the research I have done this is my conclusion. What we have is rare,real and it effectively puts a strain on one's life. One of the main things I stress to any Doctor or nurse is that I will discuss any option or symptoms but not blindly do anything without discussion. Sorry about the long post. I am having an angiography done this morning and possibly surgery tomorrow on my carotid arteries. None of this happened till my platelets hit a million and have been staying no lower than 500,000. Hope you get the care you need. In our prayers from LA lower Alabama
Hello Janbu, I have had MF for 20 years (not suitable for transplant), over this time I have learnt that you have to advocate for yourself constantly and at times this is hard. All those years ago my GP refused to refer to another health professional that I wanted to see. I advised her that under the NHS patient charter I was entitled to a second opinion, those words made her do the referral I wanted on the spot. Perhaps this may be a phrase to use. I wish you well, its your health and your choices. Best wishes.
keep speaking up. Demand to be heard. This is your body.
Welcome to the Guys gang!
hi- you have not done ANYTHING wrong! You are entitled to go and ask for an appointment with Dr Harrison. I would phone her se restart and ask for an appointment- I believe she works at St Thomas’s & Guys. Your current doctor is COMPLETELY wrong! Do you go to the Forums around the country that Maz helps arrange- there is one in Liverpool on the 20/09and they are very informative! You could ask this question o a number of experts there!
well done on insisting to speak to Professor Harrison . I had similar problems when Hydroxy caused me problems I really struggled to be allowed a second opinion so I emailed Guys Hospital myself . As a result my case was looked at & I changed medication. However I had quite frosty appointments at my own hospital after that because I asked for second opinion that no one would allow me to have . So keep pushing. I was breathless when platelets too thick & numerous but resolved once drug reduced readings to normal.
Good luck Julia 👌
You haven’t stepped out of line I had exactly the same and sadly symptoms the same attitude I was told that she was sorry I had so much wrong with me and so many symptoms but they were nothing to do with my blood . She did refer me to Prof Harrison but told me it could be 18 months. I got an appointment within weeks . The professionalism tact and care with which the proff listened to me made me think things could be so different but she handed me back to my consultant as my treatment was going to be the same . Hydroxycarbamide and clopidigrel both very effective .. she also suggested taking at night as side effects had been awful from day 2 of taking Hydroxycarbamide .
But I felt I had been listened to and though my regular appointments were as disappointing I also had this forum to confirm that symptoms were not just being old or in my head .
Good luck stick to your guns and have your questions ready .L
you have done exactly the right thing. I pressed for an appointment with one of Dr. Harrison’s team and got one and felt justified when they did very detailed blood tests and found I was low in iron and am now on tablets for it for three months. Also the same thing happened with my Haematologist it seemed none of my symptoms were down to ET , bone pain, Migraine auras, tiredness. As Hunter says we have to be bold and make a bit of a fuss to get the right treatment. It goes against everything we’ve been taught, but it’s worth it for our own good and those who follow. Please make sure you get that second opinion.
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