Hi, sorry this is a bit of a rant! I am looking for a little advice. I have ET, triple negative. I was diagnosed at 17 so have been living with this for 25 years. I have only ever been on aspirin and watch and wait. My platlets have been rising slowing over the last 5yrs and now sitting around 780 at last result.
Around 4 yrs ago my haem suggested telephone consults and getting my bloods taken at my GP. I was told at the time I would still see the consultant every couple of years. I have been doing this happily but over the last 6 months I have started to get pins and needles in my hands and feet, night sweats, itching skin and worsening fatigue.
I went to the gp and we realised that I hadn’t actually seen a consultant since changing to telephone consults 4 years ago and also that my last few bloods had shown a “deranged” liver function, so the doctor wrote to haematology and requested they see me.
My gp called me in to have a chat today and told me they have refused to see me as they do not believe any of my symptoms are to do with my ET as it would be very rare as I am in a low risk group because of my age and never having a clot. The deranged liver result has happened every second blood test for 3 yrs so they are not worried about that either And they have told the doctor to refer me to neurology and try and rule out any other causes.
I completely understand this but I am really angry about the refusal to see me and refer me themselves, even my GP was angry about the way they have done this. I haven’t been happy with my care (or lack of it) for a long time anyway but I just don’t know what else to do. They have also dropped my blood tests and tel consults to 6 monthly. I am wondering if I should try to get referred to somewhere else or pay for a private consultation? or am I just going to be wasting my time to be told more of the same?
Thank you for any help.