"Poor continuity & duty of care"

I've been seeing the nurses  for over a decade now as a means of communication to my neurologist. I have now telephone appointments when I would like face to face consultations with the epilepsy nurses ("specialists") and the same goes for the random neurologist based in Blackpool? (Who I've never met who I've had for nearly 4 years).

I have conveyed clearly the problems I have functioning with my medication both to the nurses and to the neurologist. They sigh and don't think that this is an issue. I sleep 14-15 hours a day and wake up with the feeling of being drunk. I used to work and I did study at university, I wanted to carry on with my studies to do my M.A's. Now I'm on U.C and struggling to live in a standard flat.

I really wish I did not take non of the pills that I'm on because they are not assisting me on getting me off them. I've explained I want my life back and even know that one of my meds acts as a depressant another also acts as a weight loss drug. I've lost just under 2 stone since being on these drugs and there has no action that had taken place. I have honestly felt at times I've had to beg for help as well as feeling a pain in the neck for them.

I have an appointment coming up in a month's time surprise wanted me to try me on another med (over the phone) I honestly believe the nurses may give out information that is already out there on the web or if you have a child who knows? Why I have a neurologist in Blackpool and not Preston again does not make sense and just sounds like they have read information on Wikipedia. I've heard a lot of what seems like excuses from the team such as COVID, strikes backlog ect... When it's been problematic pre pandemic. I've had epilepsy since I was 15 and now I'm now in my 30's, I've seen a major shift in the quality of care for the many years I've been in their care. 

And that's the issue 'care' the lack of it. During an appointment (face to face/telephone) or with a forever changing neurologist who does not seem to  care about my quality of life. I'm not exactly happy to see others with the same experience but relieved that it's not just my thoughts that the quality of care can be MUCH better. 

I am currently writing out a statement to the CQC about my experience with certain members of staff and attitudes as well as failings.I hope with the new hospital that is going to be built will be new staff in the neurology department.