"I believe there was a terrible misdiagnosis and poor patient care"

Recently, my parent presented to the Emergency Department (ED) at SCGH. They had been experiencing increasing numbness down the right side of their face for approximately 2 weeks and had an appointment booked with their GP for the following Monday. However, on the Friday, we noticed a slight droop had also appeared on the right side of my parent’s face, prompting the visit to ED.

My parent was seen by someone from the neurology team, who organised blood tests and a CT scan, before they were finally admitted on to a ward in the early hours of Saturday morning. Both the blood tests and the CT scan were normal and so, on Saturday morning, my parent was left waiting for the Neurology Consultant to see them, to discuss their symptoms and possible causes. Being considered less urgent than many other patients, it wasn’t until late Saturday morning that the consultant finally arrived to see my parent. At this point the consultant said that my parent should never have been admitted and that an outpatient MRI would be sufficient. In my parent’s opinion, the overall tone and attitude of the consultant was that my parent was wasting their and the hospital’s time. As the discharge paperwork was not ready, my parent left the hospital with assurances that the paperwork would be sent out. My parent still did not however, have any idea of what was actually causing their symptoms.

My parent kept their appointment with their GP for that Monday, however there was little the GP could do, as he did not have the discharge paperwork.

Five days after first attending the ED at SCGH my parent’s symptoms had worsened and they still had not received the discharge paperwork (and as such had no idea as to what might be causing their symptoms). My parent called and spoke to someone on the ward they had been in and asked if I (their adult child) could pick the discharge paperwork up. Upon picking it up (and with my parent’s permission), I read that the neurology team felt it most likely that my parent had experienced a stroke and were booking my parent in for an outpatient MRI in 6-8 weeks. (I would like it noted here that the neurology team’s belief that my parent had experienced a stroke was not communicated on their discharge the previous Saturday). On speaking to the nursing staff on the ward, I discovered that the wait time for an outpatient MRI is actually 2-3 months (i.e. 8-12 weeks). They were very helpful however, and did confirm that a request for an outpatient MRI was being processed. I commented that my parent’s symptoms were worsening and their advice was that if we were really concerned, my parent should go back to ED.

That evening, my parent again presented to ED at SCGH. They were told that they had experienced a stroke, that the only treatment was aspirin, that they should have been given aspirin on discharge the previous week and that they needed to wait for the outpatient MRI.

I was furious. I feel the communication from the neurology team throughout this entire process was horrific. Not only had they not told my parent that they believed it most likely that my parent had experienced a stroke, but nor had they discharged my parent on aspirin to reduce the likelihood of them experiencing another or experiencing worsening symptoms. In addition, there was no information given to my parent on discharge, about strokes (e.g. experiencing a stroke, what to do if you experience another).

This story however, does not end here. Thankfully, with the help of family, my parent was able to get in to see a private neurologist the day after their second ED experience, who immediately diagnosed my parent as having Trigeminal Neuropathy. Two days later my parent went for an MRI where it was discovered that there is a fast-growing tumour in their brain stem, putting pressure on the Trigeminal Nerve, thus causing their symptoms. My parent has since seen the neurologist several times, as well as a neurosurgeon and an oncologist. Imagine if we had waited for the outpatient MRI . . .

I believe the Neurology Consultant at SCGH who saw my parent only saw one symptom – a slight droop on my parent’s face – and was convinced that this meant stroke. (The other option in my view is to believe that the consultant simply didn’t care, and although I believe their attitude intimated this, I hope it is not the case). Either way, I feel that they didn’t investigate as they should have. It seems that they wanted to treat symptoms, not find the cause. I also feel perhaps, they wanted to clear a hospital bed for a more interesting case that wasn’t a waste of their time.

I am grateful that due to family and friends, with an understanding of hospitals and the medical profession, we were able to get proper care for my parent. It scares me to think of how many people ‘slip through the cracks’ because they don’t know the system, or to get a second opinion.