Taking the time to listen


#1

A crucial aspect of my treatment for Parkinson’s disease has been a medical professional (whether my Consultant, Parkinson’s Nurse, Occupational therapist, Physiotherapist or GP) sitting down and taking the time to listen to me and help me explore my disease.

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.
 
dr jonny
 
www.dialoguewithdisability.blogspot.co.uk

#2

You have been lucky so far. I have not ever seen an OT or Physio regards my PD. My neuro appointment is in January, 10 months since my last appointment!.

 

The parkinson's nurse I've met only once and that was at my instigation and I got the feeling that she didn't really understand why I felt the need to say hello!. She is available through e-mails but I often have to wait days before I get a response.

 

I very much feel that I am on my own with this and would love to see my neuro more often as I feel reassured after I see him. That feeling doesn't last long though and there is almost a year to wait for the next reassurance.

There needs to be more professional networks for people with long term, progressive conditions. I would just love to be able to pop in and ask a question quickly rather than having to wait and worry for months for a quick 10 minute appointment (If I am lucky).

 

Caroline


#3

I agree with you Caroline , i to feel that i have been left to get on with things and deal with things myself , i was given a PD diagnosis in August was supposed to be seeing the Parkinson's  nurse but when i phoned up to check on my referral i was told the nurse was off work till mid October  and when she comes back she has a 6 month waiting list  so does not look like i will get a appointment this year, i do have a appointment with  my consultant buts that's not till mid November

I take Azilect  they provide some relief but wear off on a evening so i struggle to move on at night  which is having a effect on my sleep i cannot get comfortable in bed to get a decent nights sleep  if i had access to the PD  nurse  she could  i understand alter  my medication but  i have to wait till mid November till my Neuro appointment , the consultant gave me a book about PD when he diagnosed it and it feels like it has been a case of now go get on with it , no OT, no Physio  absolutely nothing  so yes i understand what you are saying Caroline


#4

Hi  I agree totally.  I feel there is no support at all.  I have been to London for physio (i live in Derbyshire) and paid  myself.  When i asked about Stem Cells it was a negative answer.  America seems far more advanced, why can't we have the same medical treatment?  All I get from my PD nurse is another drug!  I have a young family, divorced and need to work.  At the moment i feel so alone.  What can we do??