N.S. man inspires health-care system change while waiting for surgery in Toronto

even out if Samuel Provo-Benoit doesn’t acquire the pose he in a heartfelt way wants in clip for Christmas — a kidney and pancreas transplant to beat the Type 1 diabetes that’s steadily destroying his body — he has something else to celebrate.

The North Preston, N.S., man’s story is helping to ease the path for transplant patients coming after him.

He spoke out about why, as a sick patient, he had to refer himself, without the help of a Nova Scotia physician, to a program at Toronto General Hospital’s Ajmera Transplant Centre. He's encountered medical, logistical, financial and mental struggles during the lead-up to surgery.

Even though this complex double-organ surgery hasn't been performed in this province in about a decade, there hasn't been a formal procedure in place for Nova Scotian physicians to refer patients to Toronto for the surgery.

The supply of pancreas organs is scarce, and only five patients in the last two years have gone to Toronto for kidney and pancreas surgery, according to a statement from Nova Scotia Health.

Dr. George Worthen, a nephrologist and the medical lead of the kidney transplant program in Halifax, called Provo-Benoit’s experience “a bit clunky” and noted gaps in care can happen.

“I think it was really valuable to bring it to the headlines,” said Worthen.

The challenges Provo-Benoit navigated himself included having to source and connect to the transplant program, paying on his own dime for a trip to Toronto to be assessed, and discovering blood collection workers in Nova Scotia were baffled by his Ontario blood requisition forms.

Worthen said he's addressing the “lack of standard operating procedures” by creating a “streamlined process” for referring patients for kidney and pancreas surgery in Toronto, one that includes using Nova Scotia blood requisition forms. The goal is to eliminate the potential for error or delay in patient care that can happen when two different provincial health-care systems are at work.

Worthen said Provo-Benoit should have a smoother path now that there's "a team locally that's looking at things closely to make sure that tests and investigations don't fall through the cracks."

The new process is already benefiting a Nova Scotian patient who won't be going it solo — they’ll have a doctor managing the pre-surgical workup, Worthen said.

“Just in the last week or two we had our first physician-initiated referral sent to the kidney pancreas program in Toronto.”

Andrea Norgate, a registered nurse and clinical co-ordinator of the Ajmera Transplant Centre, said in spite of the bumps Provo-Benoit has faced, he’s exactly where he should be on the waitlist — he’s next in line.

Provo-Benoit has been on the list since February. He said surgery can’t come soon enough as he looks forward to a life free from the burden of dialysis, making a long-awaited reunion with his daughters in Winnipeg possible.

He said knowing that his voice has inspired an improvement in patient care for fellow Nova Scotians is a gift.

“I’m elated with this,” said Provo-Benoit. "So even if I don’t get the call for Christmas, I’m still grateful that I’m being a part of such a major change in the health-care system.”

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Elizabeth Chiu enjoys engaging with diverse communities in Nova Scotia, and creates short documentaries to amplify voices. Have an idea to share? Let her know at elizabeth.chiu@cbc.ca

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