What do regional people need to do to get help around here? By Tonya

I have a fire in my belly, and it’s forged through experience in my state’s health system.

I live on Kangaroo Island (KI), and I love it. But I have found out firsthand that living on KI means that I, and many others, simply don’t get the treatment we need when we have a stroke - or the support we need to recover after a stroke.

In February 2021 I had a series of strokes. I had what I thought were migraines, six in all, which kept getting angrier over a month or so. I also had some unusual emotional outbursts, which we put down to stress.

I have COPD, so, we thought the migraines might be related to this disease.

While in hospital for some breathing issues thought to be associated to my COPD, I had another massive migraine, and was sent home when I recovered, at my insistence it was just a migraine. I also have very little recall of these events.

This is when things really went south for me. That day, I suffered the most incredible ‘thunderclap’ headache. It felt like a cannon had gone off in my head.

I lost my vision. I could not walk or talk, and I was home alone. When my hubby got home, he found me slumped in an armchair holding my head.

Unfortunately, I didn’t show the classic F.A.S.T. signs of stroke, but he did ask me to touch my nose with my finger - which I didn’t even come close to being able to do.

When I presented back at KI Hospital, the team immediately thought it was a stroke, but the hospital doesn’t have a CT scanner, so I couldn’t be diagnosed. I was airlifted by the Royal Flying Doctors to the Flinders Medical Centre (FMC).

I arrived at the FMC within 4 hours, but I didn’t get a CT scan or treatment for stroke until 8 hours later, as my symptoms were initially dismissed as a migraine and the KI Drs/nurses notes weren’t initially reviewed.

I lost precious time first because of the lack of services for stroke at KI hospital, and then because of delays at the FMC. What do people on KI need to do to get the stroke treatment they need? Is there a better way for regional patient who are thought to be having a stroke to be assessed better?

This delay in treatment had a massive impact on me emotionally. Neither I, nor the KI team, were believed when we said it was possibly a stroke.

I was alone, my husband wasn’t contacted, the team at KI wasn’t contacted, and the only reason I wasn’t discharged was that I couldn’t be discharged to a hotel on my own. Again coming from a regional area we cannot always get off of the Island when we need to, unlike other areas where you could drive to a major hospital if required.

Since the stroke, I have memory issues, balance issues and fatigue. I couldn’t work and getting the rehabilitation support that I need is challenging. My Dr organised a care plan in relation to my COPD so I was able to get physio which also helped with my Stroke issues.

I was initially at Flinders Medical Centre as an inpatient, but when I was discharged, there was no follow-up. I had to organise my own, it was like falling into a black hole. I made a complaint through the Health Complaints Commission as well as seeking advice through a lawyer. I wanted no one to go through what I went through, and that on top of a stroke.

Living with invisible disability is hard. I look the same, but sometimes I can’t remember what I have done from one day to the next. Good luck trying to find my car when I go shopping. It’s humiliating and hard to explain. I got lost in the carpark and lucky I had my mum with me to say “just stop for a minute and gather yourself” When you’re use to being the one doing the support to suddenly need it, is a challenge.

The fatigue is also like carrying an extra weight around your neck. Every action you do requires that extra effort, and your entire being tires, it is thoroughly debilitating.

We’re nearly at the first anniversary of my stroke, and I want to take this time to highlight the challenges that regional stroke patents still face with getting the treatment and care they need.

I have felt like a second-class citizen throughout this ordeal.

“Recently I was readmitted to Flinders Medical Centre to deal with debilitating post stroke fatigue. I have seen a marked improvement in the support that I have received from the team. I wonder if it is because I have been advocating effectively for myself. Learning to advocate has been a learning curve, but I am discovering these skills are an important part of getting the health care that you need.

I will continue to advocate for not only myself, but for other survivors of stroke on KI."