Phoned the haemotologist nurse and asked if I could change doctors as I've had enough of this smug git. He never tells me my blood count, never explains my bloods, says ET isn't a cancer and described hydroxy as ' a few pills '. The guys an idiot with no patient skills and a I know best attitude.
Hopefully I'll get a haemotologist who is interactive with patients and who I don't have to badger to get the minimum of information.
That's the way to go 😁
I am going to do the same, too many unanswered questions. Find out more on this site.
You do. It's hard enough having to explain ET to the GP, but when your getting no feedback from the so called expert it's pathetic !
Hi, well done for insisting in another doctor, yours sounds awful. My haemotolotgist gives me my blood counts every time while I write them down, he is also very "matter of fact" in answering questions honestly, sometimes even a bit blunt, but I know I get the facts explained clearly and honestly. I do hope you get a better consultant quickly, if not perhaps complain via your GP? Maybe Maz has access to information as to who would be good in your area? Best of luck, Frances.
HI
I can understand your frustration! Boy I would be angry too. I like to know my blood results. Here in NZ we just ask either the place where you have the test done or the GP for a copy of the resullts.
We have a new system where all my medical Hx is sent via email to App on my phone, where I can access all my blood results. Of course I research all the results via Internet. When I visit my haematolgist I am prepared with all my questions!! Good luck with a new Haem. Kind regards Lyn
Well done, hope you get a better one - though they seem few and far between!!
I had similar and now I am at a new hospital with a great doctor after a google search to find a specialist in Polycythemia. Best decision I ever made although waited 6 years to do it.
Sorry bit late catching up with your post. CONNO61
After dithering for ages not really happy with my original heamo , I decided to go elsewhere to an MPN specialist.( Soooo lucky to find one not to far away, thanks to a member on this forum). What a difference.....he understands just what I describe to him gives me full answers to my questions , he is pleased I am a member of MPN voice, most of all he gives me confidence.....I consider I am so very lucky to be in his clinic. Now I don't want to talk down my last heamo as everyone has their specialties. Also I am very grateful for our great NHS...but if we can find a doctor with whom we feel comfortable and confident it makes our condition easier to deal with. Thanks to all those caring staff in our clinics.
Sorry I just went off on a "shout out to our lovely people who deal with us"
I do hope you find a heamo that you can respect and who respects you.
Best wishes to you. Sandy
Your spot on there . I think I've hit the jackpot too. I had a phone call from the haemo nurse to say there was an mpn specialist in Liverpool royal hospital . I'm seeing him early in the new year .
I know the feeling well ,
Good for you ,
I've just transferred to a MPN Consultant & im very pleased I did , my last Consultant didn't think the bone pain I get had anything to do with ET , until I found out from MPN voice its way up on the symptoms list . !!!!
as Sandy said I'm also very greatful for the wonderful NHS care we receive,
But also I want the best possible care
Well done. I also did this weeks after I was diagnosed back in 2013 (PV, Jak2 positive) You need a good 'team' around you and the personal skills of your consultant are essential. My haem is lovely and draws diagrams to explain things, is now with me on my natural and so-called 'alternative' ways. She has a warmth and humour about her that makes my visits less daunting. I too, got the nurses to organise this but I'm so glad I did.
I agree having full confidence in the Medical team makes such a difference. The clinic I attend always informs me of my platelet count and sends a letter with the results too. Like you I changed doctors about a year after my diagnosis of ET. It was the best thing I did and helped me to understand my own health.
Help with blood test results please
Worried after check up.
ET diagnosis without biopsy
Letter from Government/GP???
