Best seat at the table: patients and families help shape regional cancer care

April 20, 2015

National Volunteer Week is celebrated every year in April. This year, the South East region would like to thank an invaluable care team member – patients and their families.

When a person is diagnosed with cancer, they’re introduced to their care team – from oncologists to nurses – each having an important role to play in a patient’s treatment plan. An equally important care team member is the patient and his or her family members. After all, who knows you better than you and your family do?

The South East region has the support of 13 patient and family experience advisors, all of whom are volunteers and who make up the Regional Patient and Family Advisory Council. The council meets monthly to provide the patient voice to the care that’s being provided in the region. It is based in the concept of patient- and family-centred care, which promotes collaborative relationships between patients, families and health-care professionals.

The council is consulted for all major cancer care decisions, programs and redevelopment initiatives. Each member of the council has a personal cancer connection – either as the patient or a family member.

Barbara Girard, 67, has been a Patient and Family Experience Advisor for more than three years.

“I got involved after I was diagnosed with breast cancer,” she said. “I received excellent care, there were a few things that I thought could be improved. So I thought that if I can help make it better for others, why not? I wanted to share the great experiences I had, and help change the things that could be improved on.”

Most recently, the group has advisors serving on a palliative care redesign project that’s taking place at Kingston General Hospital.

“I look forward to seeing great improvements in this area,” added Barbara. “We’re actually starting with patient and family stories and they’re going to shape the redesign project around them. The patient experience is key in ensuring that the care that’s being provided remains excellent.”

“They bring a perspective that, up until this time, has been missing,” added Daryl Bell, lead for Patient- and Family- Centred Care at Kingston General Hospital. “Until now, well meaning people did they best they could, without the most important people at the table, the patients and their families.”

Everyone benefits when patients and their families become involved in the care, added Barbara.

“These are very traumatic experiences that happen. In order to provide the best care, patients and families need to be involved with staff in a mutually beneficial partnership”

And it’s working.

“Partnering with patients and families is the best thing that I’ve ever been involved in. As far as I can see, it’s changing our culture dramatically. We wouldn’t think about moving forward with something without patients and families now,” said Daryl.

If you know of someone who has experience as a cancer patient or caregiver who is interested in making a difference in the care provided in the South East region, please e-mail Daryl Bell at belld@kgh.kari.net

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