I would like to say a big thank you for all the support and good advice I was given. My husband had his blood test Wednesday, I managed to see his specialist nurse and explained all my concerns and said I felt that we needed to have it looked at and now needed to see his consultant. She did say that lots of patients felt the same way, at this point I did say Im sorry other people are not mine concerned but my husband was. She said she would look at his notes and blood tests and speak to his consultant. Whilst he was having his blood tranfusion this morning she rang him. My husband is seeing his consultant a week tomorrow. I shall be with him, I'm not letting him attend on his own. So again thank you for your support, shall let you know how we get on. X
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Jean24
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Well done on being your husbands champion. The Specialist Nurse should be concerned that most patients feel that way, patients should feel supported & not concerned, particularly with such conditions. I know many in the group do feel like that but for a Specialist Nurse to realise it is bad to then not necessarily back it up. Hope things go ok next week x
Well done Jean. You do get to the stage that you have to insist to get what you need and stick up for you and your family. That’s great. Write down all the questions you need answered before you go and go through them one at a time until your satisfied. Don’t worry about how much time you are taking for the consultation because I’m sure you have taken your turn waiting and will in the future, when a medic gives extra time to those who need it.
It is a fundamental truth that assertive patients receive higher quality care. Passive patients do not. This is true in all health care systems.
It is disturbing to hear that anyone has to run a gauntlet that resists patients seeing higher level providers when they are dealing with serious health conditions. With MPNs, it is not enough to just see a hematologist, we really need to be able to consult with MPN Specialists. Sadly, some healthcare systems make this quite difficult.
Your husband is truly blessed to have you as an advocate. All the best to both of you.
Hi Jean24 ... I’m going through the same thing... my hematologists receptionist is Not a nurse on any level and she is in the way of my getting to my hematologist. I was told by the doc to call him if I have a concern because I will see the monthly blood test before he does .....so if I call because I’m concerned that for example my platelets are way up she responds with something ridiculous like “you probably have an infection somewhere” .... WHAT??? Then when I ask to have the doctor call me (right now we’re still on phone appts) more times then not I won’t hear from him because she didn’t let him know! Then when my actual scheduled phone appointment comes up, I don’t get the call because she figures she’d already addressed my concern!!!!!!!!!!! Now that I feel that my symptoms are getting a little worse and he prescribed hydroxyurea over the phone with very little information, I felt it was time to find another hematologist!!!! My GP has just sent a referral to a hematologist at one our best hospitals in Toronto!!! I’m just not getting the care I feel I should so I’m done with that office!!!! Just hope I can get in soon but haven’t let go of current doc until I know for sure!
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Just a suggestion but does the hospital or clinic have a complaints procedure or a patient advocacy service.
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Unfortunately Dovme I don’t know that there is really... but I think that once you get to that point the trust with that office would be lost for me. So change must be made!!!
Is there anyone who you can complain to about the receptionist. This illness is hard enough to cope with without someone thinking they know all about it, without the correct knowledge. Good luck, hope you manage to get to see the new hematologist soon. Xxx
Hi Jean24... the doctor would be the only one to complain to so I will tell him when I get the chance. Till now I didn’t want to say anything because she would have behaved worse but I don’t think you can get worse then what it is. My husband even called her one day telling her that I Really need to talk to the doctor.... she said she would get the doctor to call me but it took 2 weeks before I heard from him!!! I actually left a message last Monday early morning to have the doctor call me about questions I have about hydroxyurea that he prescribed over the phone which I haven’t started yet and I still haven’t heard from him or even her to at least say she got my message!!!!!! That’s when we said enough is enough... need to get a new hematologist!!!!!! I deserve better care then that and I have a family that would like me around for awhile!!!!! But I plan to give the doctor a long letter once I’m able to leave him for the new doc!!!!
I'm so sorry you are having to go though this. She should be dismissed, where's the patients care, fingers crossed you get to hear from the new hospital soon and you are seen by a more caring team of professionals who have patience care as a top priority. Sending you hugs
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update 
High platelet count? Anagrelide? Hydroxyurea?
PV advice
LESLEY aka SAND DANCER 💃🏻 UPDATE....
