Harold Alfond Center for Cancer Care’s volunteer council strives to enhance care for patients

Thirteen years after he and his late wife Michele Joly joined a new volunteer council to provide feedback about care for patients at the Harold Alfond Center for Cancer Care (HACCC), Steve Helme remains firmly committed to the group.

So much so that the former Smithfield resident now travels monthly from his home in Moultonborough, NH to attend meetings of the HACCC Patient & Family Advisory Council (PFAC). “We enjoy helping to make the care for patients, their caregivers and family members the best it can be. It’s a privilege to be involved,” he said.

Unlike fellow members who are cancer survivors or receiving treatment, Helme’s perspective is that of a caregiver of a loved one with cancer. Michele, a long-time nurse and administrative director at MaineGeneral, was receiving cancer treatment when the couple were asked to join the council by now MaineGeneral Administrative Director of Oncology Services Debbie Bowden.

He has seen the PFAC evolve as its members have discussed and addressed a wide variety of patientrelated issues.

“We’ve taken on anything that’s stood in the way of really good patient care or had the potential to do that,” he said. “The cancer center employees seem to count on us to help them make some decisions, which is pretty satisfying.”

A shared commitment to patients

Helme is not the only member who feels passionately about being on the council. Current Chair Jenn Kelly has been on it for more than three years. She brings several perspectives to discussions at meetings: caregiver for her late parents who had cancer, former cancer patient and survivor.

“Being on the council is a pretty big deal because I’m asked to play a role that’s polar opposite of the one I had as a patient,” Kelly said. “The council is extraordinarily important because we’re the voice of patients and caretakers.”

“We’re a link to those who can make the needed changes or improvements. We could be walking into the building and hear someone talking about an issue like parking, for example. We take that to heart and discuss those things at meetings, which then are relayed to the cancer center staff to address,” she added. “I wish every cancer center had a council like ours.”

Jay McLeod, who has served for four years, is the only member actively receiving treatment at the HACCC, which he has done for nearly six years.

“At first, I wondered what I was doing on the council because I’d never served on a board before,” McLeod said, “but I soon learned they wanted personal opinions of what you see and experience at the center – pros and cons.”

“Being on the council makes you feel like you’re doing good work, and I’ve noticed that once the council approves something, it’s adopted pretty quickly,” he added. “For me, it was good to get back into a role where I felt I was contributing. I feel honored to be on the panel.”

Similar to Jenn Kelly, nine-year member Anne Latendresse brings several perspectives to the council –first as a hematology patient treated at the HACCC when it opened in 2007, then, years later, as cancer patient and now survivor. She also lost her father and brother to cancer and her sister is a fellow survivor.

“I was asked to join in 2015 to represent patients with non-cancerous blood disorders, and I’ve been on it ever since,” she said. As someone who was treated at the HACCC from 2007 to 2020, she appreciates the opportunity to help support others.

“The council is a group of good humans who volunteer to help make the process better for everybody –patients, family members and care providers,” she said. “Being on it when I was a patient made the center feel like home and removed the fear of going there for appointments. It’s exciting to see changes being made, in part, because of the perspectives we provide. It’s my way of leaving a legacy and I get choked up when I say that.”

An enduring impact

Reflecting on both the PFAC’s origins and what it has become is a source of pride for Debbie Bowden. “I often say to the members, ‘If you don’t think your voices matter, think again,’” she said. “When I go to senior leadership for something, I let them know I brought it to the council for discussion and what their feedback was. They’ve helped me get approval for some things because their words matter in terms of supporting patient care.”

“We’ve also had council representation at our planning meetings for the cancer center expansion project and with other things like the Day of Hope and even the HACCC’s cancer committee,” she added. “As staff, we always want to hear the perspectives of patients and their caregivers. What they continue to offer is extremely important.”