I have mentioned recently that I have been trying to get an appointment with my Neurologist, with no effect thus far. I will have been diagnosed four years ago on 15/12/20 and at the time of diagnosis, I was told that I would see my Neurologist annually. However, I have not had an appointment with him since that day. I have tried to get hold of his nurse and left messages and she has not returned them. My GP was away and I saw a locum GP who agreed to write a letter to my Neurologist requesting an appointment. So far, I have not had any response in any way, shape or form to tell me what – if anything – is going to happen in relation to my seeing my Neurologist.
So, I have decided on the ‘squeaky wheel’ approach and as phone messages have not been responded to, I have written an email to the Parkinson’s Nurse.
It goes as follows:
“Hi ……
I am concerned that I have not had an appointment with …… since he diagnosed me nearly 4 years ago. At the time I was told that I would be seen annually. I think with a degenerative condition, that it would be very important to have my health and symptoms checked at least annually by a specialist such as……… I know I am under the care of my GP predominantly for my general health and wellbeing, but he is a generalist and not dealing with Parkinson’s as his ‘bread and butter’ as my Neurologist is.
I have been noticing some subtle changes and have had to give up work in May this year, so I really need to see ……….. and have a proper discussion about my condition and to have some questions answered, so that I know at least a bit more about what to expect.
The fact that you described me as a ‘slow burner’ when we have met is all very well, but I feel like a few things have changed just in the last 6 months or so and some quite recently, that I am concerned that maybe things are for some reason developing more quickly.
Could you please organise for me to meet with …………. soon, so that I can get the support that I and my husband deserve.
Thank you.
Sue Waight”
Reading my email, it does come across as somewhat terse. But, to be fair I am over playing nice as it gets me nowhere. Now that I am no longer a Social Worker and don’t need to advocate for others anymore, I can advocate for myself and my right to have the support that I need and deserve.
At least with an email, I can prove that I have asked to be seen and also whether or not I have received a reply.
It will be interesting to see if the nurse replies and if so, what her response will be.
Update hopefully to follow soon.
My journey with Parkinsons 