Consumer profile

Carol Vleeskens A Consumer Champion

A strong belief in, and passion for, equity and social justice have been the driving factors behind Carol Vleeskens’ career and her involvement in Consumer and Community Advocacy.

When Carol was diagnosed with arthritis in 2001, she had already spent many years incorporating consumer participation and feedback in her own work as a sociologist.

“I had worked for a not-for-profit organisation and was evaluating a program I’d set up. As part of that process, I interviewed participants to make sure their voices were heard. There had already been some work developing a citizen participation ladder in the late 60’s so I used that approach as well as Participatory Action Research to ensure that I was engaging with the consumers of our service,” explains Carol.

“This was supported by work I had done for my Masters which focused on a community engagement/community participation approach.”

When South Western Sydney Local Health District (SWSLHD) became the first health district to take on the Minister’s suggestions and incorporate consumer participation into their planning, Carol immediately put up her hand to get involved.

“I was working part-time in health in the area planning unit and was interested in being involved because of my lived experience as a consumer with arthritis but wasn’t sure if I could be classified as a consumer because I was working in the health service.”

Luckily, that was not considered a problem and what followed has been a 21-year involvement in Consumer and Community Advocacy. From working and leading Consumer committees at a local, district, state and nationwide level to presenting at conferences, Carol has put her energies into ensuring the voice of the consumer is heard at all levels of the health service.

“It’s been an interesting experience to change the paradigm which for so long has been top-down and whitecoat driven. However, a change in societal attitudes as well as a more patient-centered approach adopted by the health service has helped empower the consumer to be more assertive when dealing with the health system.”

To recognise her commitment to the community of South West Sydney, Carol received the 2022 SWSLHD Harry Collins Award for Excellence in Consumer and Community Participation.

Working with SPHERE

At SPHERE, Carol was the convener of the Musculoskeletal Clinical Academic Group (MSK CAG) Consumer Community Council from its inception in 2018 until late 2021.

“When we set up the Consumer Council our first task was to ensure clinicians and researchers understood the importance of community and consumer involvement. Things are definitely changing and many researchers now see consumer and community involvement as absolutely necessary to ensure better outcomes for their research.”

Although Carol has stepped down from her convener role, she is still an active member of the committee and is currently consumer co-lead on the Channelling Consumer Voices to Transform Person Centred Care, (Consumer PCC) study which aims to identify and address the unique needs, concerns and preferences of people with specific MSK conditions. The study team includes more than 30 people from across Australia and overseas and three SPHERE CAGS including MSK CAG, Aboriginal Health and Wellbeing CAG and Age and Ageing CAG. Sixteen people on the team are lived experience consumers or community/consumer research partners.

“It is very exciting because as far as we know it is the first consumer-led piece of research under the SPHERE umbrella,” explains Carol.

Although Carol has stepped down from some of her convener positions, she remains committed to continuing consumer and community advocacy.

“It’s a passion I’ve pursued my whole life and continue to pursue: to ensure that consumers and the disadvantaged have a voice.”