"Left to Suffer: The Cost of Being Dismissed with a Chronic Illness"

Recently I presented to the Emergency Department at SCGH around lunchtime in a severely unwell state. I could not stand without swaying side to side because I simply couldn’t keep my balance. My eyes were barely open due to intense pain and light sensitivity. I felt sick to my stomach, and my head felt as though it was going to explode from overwhelming pressure. These were familiar symptoms—I've experienced them on and off since my Idiopathic Intracranial Hypertension (IIH) diagnosis in 2023. However, this episode was different.

After my recent discharge from another metropolitan hospital (where I was diagnosed with a medication overuse headache, despite having not used any medication for my IIH), I noticed new symptoms—particularly issues with my speech. I was slurring, mumbling, and struggling to form words, something I had never experienced before.

Anticipating that my condition might worsen, I prepared a detailed note on my phone overnight outlining my current state and medical history, in case I was unable to communicate verbally.

When I arrived at triage, my fears were realised. I attempted to explain my symptoms but was unable to speak clearly, so I handed my phone to the triage nurse. Despite the apparent severity of my presentation—including my notes clearly stating unequal pupils for several days with no identified cause—I was triaged as a Level 3.

I understand that basic neurological observations, which I feel should have been performed immediately, were not done. The nurse took my oxygen levels and pulse, asked, in my opinion, minimal follow-up questions, and sent me to wait.

It took nearly two hours before I was given any form of pain relief. Despite my apparent visible distress and pain, the only medications offered were Panadol and Nurofen. I was in tears, begging for something stronger, as the sensation of my head being squeezed while also ready to burst is indescribable. The pain was constant, electrifying, and relentless. After advocating persistently, I was eventually given stronger medication, for which I am thankful.

During my time in the waiting area, I became increasingly concerned that neurological observations had still not been performed. As a clinician, I understand the critical importance of neuro obs in detecting deterioration. I attempted to wave down nurses multiple times, but as I was severely fatigued and my voice was too weak to call out, I believe my efforts were subtle. Despite being seated directly in front of the vital signs station, where I recall nurses were loudly discussing their personal lives, no one noticed me. I recall that not a single staff member scanned the waiting area for patients in distress. Thankfully, my parent intervened.

My parent approached the staff and insisted they assess me. Once they finally checked my vital signs and pupil response, the urgency became evident, and I was rushed straight through. The Emergency Doctor who then took over my care was exceptional. She was thorough, compassionate, and genuinely concerned. She quickly secured me a bed and arranged an urgent Neurology review.

However, when the Neurologist arrived, I recognised them as the same doctor who had seen me during my previous visit to the other metropolitan hospital. This time, their demeanour was detached and dismissive. Despite my apparent clear clinical deterioration, I felt they did not advocate for me during his consultation with the overseeing consultant. Ultimately, I was discharged that night after spending over eight hours in ED, with no improvement, no symptom management, and no clear plan moving forward. I was given an outpatient appointment for a lumbar puncture, which could take weeks. Meanwhile, I have been unable to work for over six weeks, with no functional capacity to return, and no immediate intervention arranged.