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.
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