Sunday Blog 181 – 20th April 2025
As a life-long learner I’m always signed up to some course or other, and last week I formally graduated from a pilot one-year course for people like me who’ve been a consumer representative for some time. Called CREST – Consumer Representative Education Support and Training, it was designed to support experienced representatives to become more involved in research. Worth one unit of a Graduate Certificate, the course was a mix of online learning modules and a research project. See the mini-graduation photo above, on the left.
When the CREST course started in January of 2024, the sale of Mum’s home of six decades had just settled, with her irrevocably housed in a residential aged care facility. As a family, we’d set ourselves the goal of her having a visit from someone every day, and in almost a year, there was only one day we missed. See photo above, on the right. I’d decided to do my CREST assignment on resident and families as lived experience representatives in aged care facilities. I’d even been along to a meeting at Mum’s facility about food, but was quite disappointed once I got there as there was no actual sampling. We were just talking about food and what menus people wanted.
Eight months into the course, in August 2024, Mum died after breaking her hip. Since walking behind her coffin out of the facility, sobbing and carrying the protea the funeral company had given me, I haven’t been back inside a residential aged care facility. But I carried on with the by now very melancholy project right through until submitting the final assignment in January 2025.
When it came time for me to leave the graduation ceremony, despite feeling confident that this time I’d conquered the giant sprawl of Curtin campus, I couldn’t find my car. I wandered around and around, clutching a takeaway container of snacks, leftovers from the generously catered event that had been pressed upon me. A kind volunteer about to start his shift on Curtin Community radio took pity on me as I walked past him for the third time. He offered to drive me around as I clicked my fob, looking for my car’s lights to blink kindly at me.
It seemed a perfect metaphor for how I’ve evolved as a lived experience representative. At the heart of this work is a life-changing experience of illness, injury, trauma, disorder, disability. A carer representative is someone who cares for someone going through any of the above.
For me, becoming a mother in 1998 was a life-defining experience that kicked off my consumer representative journey. Nothing bad happened. I just wanted to access the evidence-based model of midwifery-led care in a family birthing centre with access to a birthing pool. If I’d been having my baby in Sydney at the time that would have been quite normal, but it was not how things rolled in 1990s Perth.
When my daughter was three, another life-defining event of surviving a home invasion saw me pivot to victim support advocacy. The frustrations inherent in this work meant I drifted back to health advocacy, back to maternity care and women’s health, and over time, to a systemic advocacy role that spanned every conceivable area of health.
After the nice radio volunteer and I had toiled around four different Curtin car parks, my car finally answered my distress call and its lights flashed in a car park I could have sworn I’d never been to in my life. I thanked the volunteer profusely, tried to offer him the snacks as a thank you, which he declined. I walked to my car with as much dignity as I could muster, carer and a consumer representative graduate, and someone who should always catch an Uber to Curtin.