HI, I was diagnosed with primary MF in July 2014. Despite attending haemo clinics every four weeks to start with, then every ten weeks and then every eight weeks I have NEVER seen a consultant. I live in the Bristol area. I have seen a collection of registrars and doctors all of whom have now moved on. No one has answered any of my questions. I receive transfusion support - 2 units per month and then every three weeks and now every two weeks and my Hb is still dropping! I keep trying to discuss medication but keep being brushed off. As I never see a consultant I assume these other people are not authorised to prescribe and so I am told I will know by the next clinic. I presume they talk to each other at times! When I turn up at clinic I see someone different who denies all knowledge of any discussion about medication and I'm back square one. Today I discovered that the Consultant whose name appears on all my letters and whom I have asked to see by name is not my consultant at all. It is another person whom I have never heard of and certainly never seen!
The nurses in the day unit are fantastic and have kept me going all this time but despite them telling the doctors today that I was distressed during the FIVE hours I was in the hospital no-one came to see me.
I am going to see my GP tomorrow to ask her to refer me elsewhere possibly Cardiff or even London. The Southwest seems to be a bit of a wasteland of MF. I can't go on like this. Just recently I have felt so ill that I have been afraid to go to sleep in case I don't wake up!!
Any thoughts?
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trevic
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You don't say where in the Southwest you are? I live in Exeter and see Dr Hamilton at the RD&E. I don't always see him and sometimes see a registrar, but if I particularly want to see him, I ask when I check in and they put a note on my file. He's brilliant, very well informed. You should have answers!
Thanks for your reply. I live on the outskirts of Bristol and have been toying with switching to Cardiff but your comments on RD&E have got me thinking. Dr Hamilton is the only doctor (outside of the major centres) that lists myeloproliferative neoplasms as one of his specialisms. He sounds good. It would take about an hour to get to RD&E, it takes 25-30 minutes to get into Bristol! It is no surprise to know that having made a fuss I now have been offered a meeting with a consultant next TUESDAY! I still think I'll change, however.
I'm so sorry you are having such a difficult time. I was diagnosed in Bristol and treated there for the first 6 years. In retrospect I feel they simply didn't have enough experience with mpn and as you say the turnover of registrars seems very rapid.
I would suggest that you ask to be referred to a specialist centre, I went to Guys and Thomas's in London and stayed there until recently when I was geographically settled near another good centre so move.
You deserve to have good experienced doctors who can (and do) discuss your options and the possibilities for the future.
Have you been to a Forum, if not I would recommend that too, not instead of but simply to get a feel of other people experiencing similar things and their experiences.
Crikey, what simply appalling treatment. I have two words.
Move on.
I was diagnosed with PV 6 years ago. For the first 5 I saw an excellent haematologist at my local hospital in Cumbria who knew his stuff but who was very dictatorial - never discussed my condition with me or asked me what I would prefer in the form of treatment - more medication or a venesection ( I prefer venesection) treated me as a bit of a numpty on occasion which I didn't appreciate, and I wasn't entirely comfortable.
In the last ten months I saw five locums - none of whom knew me, and I didn't know them.
The last one, a German chap, tried to send me packing for 8 weeks with a haematocrit of 49 and a banging headache. When I demanded a venesection, he asked me if I'd stopped taking my medication! Cheeky beggar.
I stood up, glowered down at him and said " what sort of a half wit do you think I am?"
With that I made a sharp exit, came home, spent half an hour on my iPad researching other consultants who are MPN specialists.
I sent an email to Tim Somervaille at the Christie in Manchester, and within 24 hours had received a reply saying that he would be delighted to see me. Couldn't be better!
Tim is a superb haematologist, and the staff at Christie's are equally excellent. They know all the patients by name and are delightful.
I feel extremely fortunate to be a patient there.
So, do your research, find a haematologist who specialises in your condition, and as I said - move on.
Travel as far as you need to, even London.
This is your health and your life - distance, in my opinion, doesn't even come into it.
I bet you are glad you found this site ! With out a doubt you do need to travel to speak face to face with a specialist ..why not try to get up to London ? ..the most brilliant proffesor is at guys and st Thomases ,,we go to forums there and come away understanding so much more about these problems ..ask your doctor to contact them .you are so stressed ,in the dark ,it's a awfull place to be ..come now .make a start ,get on the phone ,be firm ,just tell it like it is to the rottwieler on the reception desk ..go to the best ,why not ?? You know you are worth it !! Twinkly ....
Do write to the senior consultant in Haematology with your complaint and the questions you need answering, contact his secretary for an appointment to see him. It is advisable to take someone with you to the meeting. Send a copy with your complaint to the Chief Executive of the hospital. Make a fuss, don't let them ignore you.
Written complaints have to be dealt with promptly in the NHS. You should be given information with the reply to your letter on how to take your complaint further if you are not satisfied.
My Husband has PV and after attending a forum, we asked to be referred to a Specialist in MPDs who is based at Southampton Hospital. Someone else has also said look up Specialists and travel if you have too - I agree!! We now see the Specialist every 6 months and he dictates to our local Hospital, Salisbury, what to keep Hubbys blood at and when to alter meds.
Dr Duncomes made such a difference to my Husbands life, knowledge and understanding of this rare condition are essential in your Consultant. Write a letter asking respectfully for a referral to another Consultant....check Cardiff for a Specialist as I think there was one there.Also go to the forum in Cardiff....so worth while. Good luck.
If you live in the provinces anything special is terrible , If you think Bristol is bad , i would suggest Prof Claire Harrison . II think she works out of Guys in London. Dont take no for an answer
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