Well, I finished my steroids (2nd 5 week course - got me through the summer and my holiday in Italy - made a world of difference to me this summer!) last Tuesday 13th September and am now up to 3 grams a day on the Mycophenolate Mofetil. I had to wait 2 hours to see my Knight in clinic. Appt was 4.40pm and I went in at 6.40pm. He couldn't believe that I had waited to see him. But that appt was so important to me. It was his last day working for my NHS area health board and therefore he had a very busy clinic. I spoke to a nurse whilst I was waiting and she told me that they hadn't managed to find a replacement Consultant Dermatologist and that the clinic was going to be run by the lower grade doctors in the Dermatology Department. So I knew that I had to just ask him if I could see him in Cardiff instead. I am more than happy to travel to see him. (He said he could see that, as I had waited 2 hours to him that day). I trust him and have faith in his ability and knowledge of Lupus. He explained that he had tried to move some patients with him, in order to lessen the burden on my NHS area health board but that they blocked it and he didn't agree with their objections and was following it through. I told him I didn't want to be left in the care of anyone else. I said that it was nearly 3 years since my diagnosis of SCLE and that he was the first doctor I had seen that understood the disease and got me and my symptoms. I said the others didn't understand and didn't understand my medication at all. I said this is a chronic condition. I need a doctor long term that can help me. He thinks the best thing for me to do is ask my Rheumatologist to refer me directly to him. Then it wont seem like he is "poaching" me. I hope my Rheumatologist agrees!!!!! In the meantime he told me that there is a GP at my other hospital, a GP with a specialist interest that can monitor my bloods on the MMF etc. Then I can hopefully sort out appts with my Knight in Cardiff when I need a review or more serious help etc. I really hope that my Rheumatologist will cooperate with my request and refers me to him for his list in Cardiff. And that no one blocks it. Came out of the appt at 7pm and it was 7.40pm byt the time I got home - shattered!!! I have everything crossed! Why is nothing easy????
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