"Neurology Forth a Valley"

I have been in the neurology system for approx 4 years now. I still do not have a diagnosis and like a previous patient's story have been subjected to lengthy waiting times for referrals to be processed, MRI result (this took 9 weeks). And like the previous patient the excuse was that they were understaffed with admin staff!

More recently I have developed new and progressive symptoms affecting my work and personal life. I was then referred to another specialty, who have advised after numerous tests and examinations that the primary issue is neurological. I have now had an urgent referral back to Neurology. I have a routine follow up appointment in April with neurology, however, the recent urgent referral requested that I be seen sooner than this.

After chasing an earlier appointment I have now been advised that this is not possible as the neurologist is off for the full month of March. This is extremely disappointing and anxiety provoking given my new symptoms and the impact it is having on me, ie I am unable to work with the symptoms I have and struggle to undertake activities of daily living! The issues and criticisms relate to:

The processes of managing appointments and urgent referrals

The cancellation of a month's clinics with no interim provision of locum cover

The fact that I have had to actively chase all my appointments and results throughout my patient journey.

I am extremely dissatisfied with my patient journey and feel that I have been subjected to unnecessary waiting times for appointments and investigations as well as feedback of results.

Last year I waited beyond the patient charter waiting times and cannot understand why a year down the road there is no improvement in the service provision in this respect. Patients are at the mercy of services and as such are helpless in being able to influence change in services unless they express their concerns in a manner such as this.

In addition as a health service employee I find my situation a huge embarrassment when I am continually being asked by family and friends why I cannot be seen sooner. I have also had to listen to them vent their anger and disgust at the way I have been managed! Surely this deserves so be investigated and strategies to be implemented to improve patients experience, after all the NHS approach these days is supposed to be patient centred!