"Horrible care"

I have been an outpatient for the neurology department for several months now. This does not include the wait time to get my first appointment. My first appointment was in August, at this appointment I felt as though my concerns were not being heard and that the doctor was being quite dismissive. The doctor concluded that my seizure like episodes could be treated by just avoiding stimuli, the stimuli being stress, anxiety and pain.

Another trigger for my seizure episodes has been blood tests. The doctor decided to order an EEG to rule out epilepsy as well as record what happens during my episodes by triggering it with a blood test. I had said EEG in September, when I attended the appointment, I felt the individual preforming the test didn’t know my case, seemingly didn’t know why I was receiving the test and therefore didn’t try and trigger the episode with a blood test and proceeded with just a general EEG.

However, due to my decline in health my GP decided that we couldn’t keep avoiding needles and blood tests as I needed answers. We proceeded to attempt a blood test early this year where I then had two back-to-back seizures where in between I began talking and conversing with the doctor and family member present however I have no memory of this occurrence. After this seizure my GP decided to send myself and said family member to the ER at Sir Charles Gardiner Hospital in hopes that I would get some help/answers or maybe there would be something present after an episode.

I attended the ER with a referral from my GP and waited over 3 hours to be seen. When I did get checked over, the doctor and the two nurses I saw all said that I needed answers and that they would try and push for me to get help. All three also noted that there was lingering seizure activity as my eyes were still extremely dilated. After another 2 hours back and forth the ER doctor talking with the neurology team decided to send me home with the advice to follow up on my next appointment. I received the same advice to avoid stimuli and was sent on my way. I have been declining even more since this last episode.

I attended my recent appointment; I checked into my midday appointment and wasn’t seen for an hour. The appointment was by a different doctor who informed us that they thought my appointment was over the phone not in person. We then proceeded into their office where they informed myself and my family member that they were taking the appointment for the neurologist that I previously saw as they weren't in. The doctor then stated they were there to give me the results of the test that was preformed and that it was clear. They stated that young people sometimes have these episodes, that I’ll grow out of it and to just avoid stimuli.

I tried to discuss a condition I came across that was identical to my situation (Reflex Anoxic Seizures), while speaking this doctor appeared to nod condescendingly at me the whole time. They then proceeded to tell me that said condition I mentioned was caused by brain injury. I tried to ask for anything else, if there was anything I could do, pleaded that I needed testing done to find out why I am declining so much and I recall the doctor all but said no and pushed us out the door.

All this has left me astonishingly frustrated and angry, I feel unheard and dismissed. Each time I have attended these appointments I have to have family take time off work as I am not allowed to drive due to these episodes. I haven’t been able to work and I have lost my independence.