Thanks to advances in pediatric cardiology, congenital heart disease patients are advancing into adulthood in unprecedented numbers. To prepare them, Pam Heggie, RN, organizes an education day in Edmonton for patients and families to learn about living with their disease.
In April 2017, 50 patients and their families connected with adult care providers, met each other and learned more about congenital heart disease. This education day is above and beyond Pam’s normal working duties.
“Our patients are an amazingly resilient group, but living with chronic illness is tough,” says Pam, a clinic nurse coordinator for the Northern Alberta Adult Congenital Heart Clinic.
Young patients with congenital heart disease form strong bonds with their pediatric health-care team after years of treatment and open-heart surgeries. Pam’s education day helps patients transition to support from the Mazankowski Alberta Heart Institute and other resources.
“I strongly believe that educating patients and letting them know that they are not alone in trying to manage the challenges of living with their condition helps them to cope,” she adds.
Pam invited surgeons and cardiologists to speak at the event to help young people learn to manage their condition throughout adulthood. Topics included:
Pam spoke at the event, as well, encouraging patients to be active participants in their own health. Her session, “Becoming your own CEO”, likened the job of a CEO to the role patients have in their own care:
Knowing that patients need peer support, she also recruited guest speakers from Edmonton’s Pediatric Peer Support Group and Canadian Congenital Heart Alliance, an adult support network.
The first education day was held in May 2015. Pam hopes to make it an annual event, and planning for spring 2018 begins soon.
“As a nurse who has worked in adult congenital heart disease for over 15 years, I feel I have a unique role as patient educator and advocate,” says Pam.