Advocating for Patients: Volunteers Lend Their Voices for Patient Advocacy

Cathy Arsenault had fought obesity her entire life, trying different diets or weight-loss programs to no avail. After deciding to undergo bariatric surgery in 2012, she had to find the right doctor and the right hospital.

“When I came to REX, that was the first time I’d felt hope,” Arsenault recalls. “They have a way of putting their arms around you and saying, ‘You know what, we’re going to do this together,’ and that’s exactly what they did. I went to two other North Carolina hospitals, but I just wasn’t getting that warm and fuzzy feeling until that evening at REX.”

Arsenault lost 150 pounds after her transformative surgery and accepted a volunteer position on the bariatric service line. She later joined UNC REX’s Patient Family Advisory Council (PFAC), which she co-chairs with Director of Patient Experience Deb Stargardt.

Created in 2014, the PFAC meets quarterly and is comprised of former patients and family members who listen to patient/family concerns about everything from arrival to discharge and advocate for change.

“I’m a big advocate of bringing the voice of the patient and family into decision making,” Stargardt says. “It was one of the first things I looked for when I came to REX — whether they had an active PFAC in place. PFAC members speak on behalf of the patients to make things better.”

UNC REX also has a Patient Family Advisory Council for its Neonatal Intensive Care Unit and Cancer Center.

Collaboration with PFAC and NICU Healthcare team on Kangaroo Care education.

NICU Reunion volunteers.

“The Neonatal Intensive Care Unit PFAC was formed to provide an avenue for parent alumni to contribute their time and support on behalf of parents whose children are currently in the hospital,” says NICU Clinical Manager Michelle Clements. “Parents are in need of support from other parents that have been through the NICU experience … a valuable voice that we can’t provide.”

Besides offering a listening ear and proposed changes, PFAC members provide care packages, meals, gas cards and baby clothes. “They raise money for equipment, like a new swing for the playroom,” Clement says. “In September they held a cookie drive for NICU staff, and when the COVID-19 pandemic started, they brought about $1,000 worth of nutritional snacks and drinks to the NICU medical and nursing staff.”

Cancer Center PFAC members are just as dedicated, says chairperson Lou Arp, a retired pharmaceutical executive and former cancer patient.

“We make our rounds, spending several hours every other month in a clinic with patients for face-to-face discussions,” Arp says. “We also have evening meetings with our board where we debrief management on our observations and suggestions. It’s a worthwhile time commitment.”

Arp says the Cancer Center PFAC has focused on reducing the stress on patients between diagnosis and the start of treatment. “When you’re diagnosed with cancer there’s going to be some stress, but if we do things right we can eliminate some of the unnecessary stress,” he says. “What we’ve found is once you have a treatment plan, even though you have a serious diagnosis your focus becomes the plan and not the cancer.”