Current care at local hospital

[sjdard]

Hi been under my local heomotoligist and feel I'm not getting the care or advise I need. I wrote him a letter asking if I could be seen at Guys and St Thomas under Claire Harrison. I received a copy of the letter sent to her and was quiet upset by it. I was on hu it was fine to start with and was working well, but then I start to feel unwell and it was making me sick so I stop taking it. Then I had appointments cancelled and the care from him was very hit and miss. I had a couple of telephone consultation lasting no longer then 10 min. At my last appointment back in May he put me on Anagrelide, I started taking it but is gave me very bad headache and palpitations aswell. I phone and asked what to do and if I could get an earlier appointment than the end of January next year. I was told there no way I could have a earlier appointment as he to busy but somebody would call me. They called and told me to stop taking the Anagrelide. But didn't change appointment. In the letter he more or less said it was my fault for the rise in platelet as I was not taking the medication. Every time I saw him it was not for any longer than 5 min, every time I asked question he was not interested in what I had to say, my last appointment all he talk about was the Manchester bombing. What he said in this letter will it effect me gettin an appointment to seeing Claire Harrison. Cos what he said I don't want to go back and see him as I think he won't treat me the same as I asked to see somebody else. I just want to be seen by somebody who understand, and has the knowledge about the condition (ET). Feel very anxious now which doesn't help. Any advise please.

[Aime]

Hi, there's nothing worse if your not happy with your care as well as having an unusual and worrying condition. I have no personal experience of the team at Guys but so impressed with Prof Harrison when I spoke to her at a London forum.

Every post when someone has been referred to the team at Guys is always so positive so go for it! If you are not happy with your care you worry more and that just makes coping harder and affects you physically. Be assertive (I wouldn't have disagreed with a medic before PV came along) but now I do - very politely as it is my body, my disease and my life which I want to live for as long as possible and as healthy as possible.

Please get your referral to Prof Harrison as worrying and uncertainty will make your illness worse.

Kindest regards Aime xx😺😺

[sjdard in reply to Aime]

Thank you for reply, he has sent the letter to her and I have also asked gp to refer me to. It just a waiting game now. Hopefully she will see me so I can get this under control. Thanks again for your reply.

[linphy]

Hello, i was on both those medication and i struggled with both of them, i was thenput on Pegasys in April, but was taken off it last week. My consultant said he doesn't want to see me until September, my platelet are fine 386. But i have had problems this last week ended up in hospital with allergic reaction, covered in hives, im on steroids at the moment. Please let us know how you get on. Im on asiprin 75mg a day

Take care

Linda

[sjdard in reply to linphy]

Thank you for the reply, I sure will let you no when I here anything. My platelets at last blood test in May was 785 and increasing, my next test was not until Jan but my gp has requested one. So let see. Thank again

[sjdard]

Still waiting to here if I can get an appointment with Claire Harrison, don't know what going on. Feeling very down, don't want to go out, so tired all the time, headaches and generally not feel very well. Work becoming a struggle, anxiety is getting the better if me. Must snap out if it. Any advise please.

[sjdard in reply to sjdard]

I got my appointment for Claire Harrison clinic at Guys. Much quicker than I thought 26 Sept.

Much better than end of January.

[Jbut]

I have appointment's every 12 weeks i have ET myself under control with interferon for the last eight years,if your not happy i would change doctor if you can x