Obviously, I haven’t had Parkinson’s before so getting the opinion, the undivided attention, of an experienced professional has been psychologically of great comfort. I have felt I wasn’t alone in the daily battle with my disease. Of course my family and friends give me incredible support but it is that detached, objective support that a medical professional gives which is also of benefit.
However, this aspect of my treatment has started to be overlooked. I have been told I can no longer see my Physio and Occupational therapist; it seems I have used up my NHS tokens. I see my Parkinson’s nurse and then my Consultant at 6 monthly intervals (meaning I see each of them at yearly intervals). I can e-mail my Parkinson’s nurse and I appreciate this but her reply is just pixels on a screen. There is nothing like seeing the concern and determination of a person in front of you.
I believe that living with a chronic, incurable progressive disease requires the feeling of not being abandoned by the NHS and the medical profession. Reducing the waiting time between appointments, having regular appointments scheduled (if spaced apart) with a Physio or Occupational therapist, having consultants and Parkinson’s nurses attend more Parkinson’s UK meetings or holding open days at medical or scientific conferences for the general public would engage patients more and help them understand. This is the crucial point – feeling abandoned is being unable to teach yourself about what is happening to you and what you can do about it. Treatment is not only about taking tablets; it is about empowering patients with knowledge so they can be, in the day to day challenge of a disease, something like their own doctor.