I was diagnosed 26 months ago by a private neurologist whom I had consulted because of the delays I was experiencing getting a diagnosis on the NHS. I continued seeing him until the end of 2018, but then decided to see if I could access NHS treatment.
I saw an NHS neurologist in March '19 who drew up a treatment plan, that I should see him every six months, and the Parkinson’s nurse every six months, with the appointments staggered so that I saw the nurse three months before/after the neurologist.
Due to lack of resources this treatment plan has never worked. I’ve not been offered any more appointments with the neurologist and now I am only being offered three monthly telephone appointments with the nurse.
I can’t decide whether this is adequate or not. At the moment my condition is fairly stable. I’ve been on 5 Madopar a day since February and don’t feel that there has been significant deterioration. I do have mild dyskinesia and wearing off, but not enough to severely inconvenience me. Physically, I’m actually fitter than I was a year ago. However, I want the reassurance of knowing that if I do experience deterioration, I can get my medication reviewed promptly and I’m not convinced that a three monthly telephone conversation is sufficient to monitor my condition, particularly given the agonising delays for NHS care that I’ve experienced in the past.