"Failing to acknowledge concerns over spinal issues"

A few years ago, concerns were raised with a neurologist regarding symptoms that appeared to be spinal in nature. A neurological community nurse at the time sought to raise Autonomic Dysreflexia as a potential condition, as they believed all symptoms matched. 

The neurologist stated as I recalled, that only people in car accidents get spinal cord injuries. Myself and the neuro nurse were, I felt, berated for the concerns we had raised.

I requested for an MRI to be conducted. The MRI was conducted earlier this year. I requested for the MRI report from FOI Officer that same day. I received the MRI report that held clinical findings.

Additionally, I received a letter from the neurologist with their interpretation of the MRI Report that I believe misrepresented the clinical findings as being of no concern and stated that they hope it reassures me.

Upon the next outpatient appointment with the neurologist drawing closer, I contacted the outpatients clinic to refuse to attend the appointment with the neurologist and sought for a review by the head of neurology.

Initially I was informed that this request would only be accepted if it came from a doctor, however, upon further self-advocacy an appointment was set for this month, which has been pushed back to next month.

A few months ago, I would attend ED and be an inpatient in three different private hospitals for complex spinal and pain issues which has resulted in being discharged from a private rehabilitation facility in a powerchair. These issues are believed to have been pre-existing prior to my ED presentation and not due to any acute injury.

In my opinion, it is clear that neurology is incapable of managing my care needs and for the neurology department to remain the lead in my case management would, I believe, leave me at further risk of neglect. I feel neurology have failed to appropriately manage my care since many years ago and this latest issue relating to my spine is, I feel, the pinnacle in a long history of what I believe has been neglect that I feel has resulted in my physically decline into a powerchair.

In my opinion, neurology have sought to protect their department, colleagues and their own professional reputations rather than seeking to resolve any blatant misdiagnosis and mismanagement based on my experience. As a result, I feel any new diagnosis or any new clinical concern raised with their staff will be automatically dismissed, I believe so as to not attract any liability or impression that there may be a degree of incompetency present.

Based on my experience, this creates neglect, as the patient is left without appropriate response to their concerns which has, in my case, resulted in a critical physical decline.

I believe it has also been inappropriate to be managed by a neurologist since some years ago, who specialises in a specific neurological condition, of which I believe I do not have nor show any signs of developing. I feel it is this mismatch in management vs patient needs that I believe has also fostered the neglect.

I feel the most appropriate departments to oversee my care would be:

- Neurosurgery (referral still pending)

- State Spinal Clinic (No referral yet)

- Specialist seating Clinic (No referral yet)

- A particular doctor via Pain Medicine (No referral yet)

- Immunology (Outpatient Appt for next month)

- Any department suitable for gastroparesis, dysphagia, digestive tract low motility management.