As manager of the Hunter Stroke Research Volunteer Register, I connect people with stroke with our researchers. I need to make sure that the best minds in science are working together with stroke survivors on the important problems that arise because of stroke.
In my research and research support work I’m focused on both improving treatments for stroke so that the mind and body can recover optimally, but also on changing society, architecture and culture so that people with disabilities have the same access to healthcare, employment, relationships and community as abled people.
I’m a rehabilitation physiotherapist, personal trainer, exercise instructor and athlete by background and have a passion for working with people to get the most out of their body.
As part of this, I’m working on
I’d been working as a physio with mostly older people, on adapting and managing to get around with a body that worked differently to what they were used to, for a decade.
I’d grown frustrated with the ageism that is ingrained into our culture and the low expectations that are set for people with disabilities. Almost all of my patients with stroke (and other chronic diseases) had been told at some point in their recovery to ‘just take it easy’ and to ‘be careful and rest’. It’s been thirty years since we’ve had sufficient research evidence that physical activity and having high fitness improves health in nearly every condition so persisting with this advice after the acute phase is unethical.
Of course, actually doing the exercise it is not easy, and our modern environments can make it more difficult, regardless of what physical capacity anyone has. So I was excited to start research work to refine what seemed to have been working with the people I was seeing in my clinical practice. I was working as a physio in the Lower Hunter area’s Transitional Aged Care Program a couple of years ago when a research assistant opportunity came up in the stroke recovery team at HMRI – and I haven’t looked back.
I have a degenerative neuromuscular illness. I was told in my early 20s by medical professionals to give up my physiotherapy career aspirations, and indeed to prepare for retirement. Thankfully, I was privileged enough to be in a position to search the research literature to find some proof that this was actually necessary. I didn’t find any, so I carried on. The fear that others would be handed such misguided low expectations motivated my move into research.
To ensure that consumers are involved at every stage of decision-making in research and healthcare.
Most of the recovery from illness and the health management required for getting on with living with disability happens away from traditional healthcare settings – it happens in the real world. Ultimately I want to see rehabilitation embedded in community settings and into culture. I want to influence culture to promote inclusivity.
Imagine an Australia where active transport, access to healthcare, workforce and community was easier and safer for everyone, regardless of their functional capacity. Where accessibility was expected and people with disabilities were given a level playing-field for participation!
Gillian is a clinical trials manager, physiotherapist and researcher for the stroke recovery research team, Priority Research Centre for Stroke and Brain Injury, University of Newcastle, based at HMRI.
She also works as a science communicator for the NHMRC Centre for Research Excellence in Stroke Rehabilitation and Brain Recovery. She's a physiotherapist with 14 years' experience in rehabilitation and manages the Hunter's stroke recovery trials recruitment and community engagement platform, the Hunter Stroke Research Volunteer Register.
She started her physiotherapy career working in heart failure and respiratory disease rehabilitation, drawing on her experience as a personal trainer, exercise instructor and athlete to work to find out what motivates people to use exercise regularly as medicine for better health. The largest part of her clinical work has been with people in the home and community setting.
She teaches gerontology to physiotherapy students at the University of Newcastle. She lives with Ehler’s Danlos Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy and her health care consumer experience adds a valuable perspective to the conversation about translating research into practice in a valuable, person-centred way.
My future focus is to explore the ways that smart technologies can contribute to more efficient and intuitive patient-centred healthcare, rehabilitation and participation in the community. I’m determined to see access to rehabilitation and support become convenient, ongoing and embedded into the community, with supports and inclusivity part of our culture.
ABC Newcastle interview with Kia Handley - 25 June 2019