Against all odds: The road to patient advocacy
When Jeff Preston was born, his parents were warned their son would likely struggle to achieve anything in life – independence, mobility, education – as a result of his diagnosis of Congenital Myopathy, a gene mutation that causes defects in various proteins necessary for muscle tone and contraction. As a child, common treatment protocol required Preston to endure hours of torturous therapy in an effort to walk. This was believed to be the best chance at allowing him to live a full, ‘normal’ life.
That all changed, however, when around the time he was to begin elementary school, Preston’s care was transferred to London Health Sciences Centre’s Children’s Hospital, where rather than prescribing the treatment he would receive, he was asked for the first time what he wanted out of his care. As it turned out, walking wasn’t Preston’s biggest concern. Going to school, making friends, and playing with other kids his age topped his list.
“My life changed the day Dr. Angelika Hahn (now retired) brought me and my parents into the decision making process. She heard what I wanted, and from that day forward she was one of my biggest advocates in helping me live the life I wanted to live,” says Preston. “Dr. Hahn, along with my nurse practitioner, Wilma Koopman, and my parents advocated for me to attend regular classes at school when the school board insisted I go into a special ed. class because I was in a wheelchair. What’s more, they encouraged me from a young age to be vocal and advocate for myself, something that has shaped me into the person I am today.”
Major spinal surgery at the age of 13 would see Preston facing a new challenge – the fusion of his spinal cord, permanently limiting his movement even more than it already was. “Going into the surgery, I was worried about what would come next – a painful recovery and the potential loss of further ability, all while my classmates back at school were worrying about grade eight prom and graduation,” said Preston. “Coming out of surgery, I was extremely sore and didn’t feel like doing much of anything. Worse still, I was told the recovery process could take up to six months, so it was difficult getting motivated to begin rehab. Thankfully, I had a nurse who wouldn’t put up with any self-pity from me… and I mean none. She made me work at my recovery, and kept me moving ahead when I easily could have stopped trying. She knew she needed to push me. It’s funny, but when I look back at all the time I spent in and at the hospital in my younger years, my memories are of the people and relationships we formed, rather than the pain or the procedures.”
It wasn’t until Preston moved from his home in Port Elgin to London to attend Western University that he really began to realize how unique his experience living with a disability had been. He grew up in a community that rallied around him, had parents that supported him in all he did, and had a medical team that encouraged him. Meeting new friends at university and through extracurricular activities such as wheelchair hockey (Go Electric Knights!), Preston learned that not all of his peers were as fortunate.
“Many of my friends shared stories of their concerns being brushed off by others, their education limited, no one advocating on their behalf,” said Preston. “And once I was on my own, it became increasingly clear that in many ways, the world was trying to push us out – maybe not directly, but by excluding us from having the chance to do all the same things our nondisabled friends could do. The advocacy skills my parents had instilled in me were put to good use.”
Fast forward a decade and you can now refer to him as Dr. Jeff Preston. With a PhD in Media Studies, Preston is an Assistant Professor in Disability Studies at King’s University College – a brand new major he was hired to help expand a year ago.
“I really feel like this is where I’m meant to be,” says Preston. “We’re trying to advance the way people imagine disability. For a long, long time decisions have been made for people with disabilities, rather than with the very people those decisions most impact. My hope is this program helps encourage students to understand why it’s vital that people with disabilities be part of the process, not just the reason for it. As the international disability rights movement says – ‘nothing about us, without us’. Who better than people with disabilities to determine the needs of the disabled community?”
The health-care system is not immune to the bias toward making decisions for patients, rather than involving patients in informing what their care and recovery will look like. It’s for this reason that Preston accepted an invitation from the hospital to share his experience and perspective as a member – and co-chair - of LHSC’s Patient Experience Advisory Council (PEAC), which provides strategic oversight for patient experience and patient and family engagement.
“The PEAC offers the opportunity to insert the patient’s voice into all levels of the hospital system,” says Preston. “Hospitals can be important support systems for families, but we know that there are situations where that support can break down. Patients bring tremendous knowledge that can help make the system better. We need to empower them, and allow them the opportunity to collaborate with their care providers rather than simply being told what their care journey will look like.”
For Preston, the idea of health care being a collaborative effort is not a distant hope – it was his reality - and because of that, he seeks to be the example of what a quality, patient-centred care experience can look like.
“Access to supportive health care plays a critical role in changing outcomes for individuals with disabilities,” says Preston. “I don’t think anyone goes into the field to make it harder for patients, but sometimes what seems obvious to people with disabilities is foreign to those who haven’t had to face the same challenges. And the same can be said for patients from various ethnic or cultural backgrounds, patients from the LGBTQ+ community, and patients from different socio-economic situations. How you’re treated as a patient shouldn’t be determined by who you are. The work the Patient Experience Advisory Council does isn’t about shaming the profession or the system, it’s about reframing the discussion to imagine health and recovery in more equitable ways.”
The PEAC is one of five formal patient and family advisory councils at LHSC, and there are currently approximately 200 Patient and Family Advisors throughout the hospital. The work of these advisory councils signals a continuing shift in health care delivery from an institutional approach to a holistic, patient-centric focus. Patient and Family Advisors make recommendations regarding access to care and service delivery improvements and, in some cases, participate in quality improvement projects, policy development, and research.
At the heart of that work are advocates and everyday people, just like Preston, who willingly give of their time to help ensure that health care is equitable and accessible for all.
“I don’t know where I would be without the care and nurturing I received from the hospital over the years,” said Preston. “I don’t feel like a specimen to be experimented upon, but rather, as an active member of a health care team, with valuable insight about not just what I’m experiencing but the kind of life I’d support living.”