N.S. man inspires health-care system change while waiting for surgery in Toronto
CBC
Even if Samuel Provo-Benoit doesn’t get the present he dearly wants in time 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.
“It’s making me feel like my purpose [in] life is being fulfilled to help someone else along this journey called life,” Provo-Benoit, 35, said in an interview about going public to CBC in September.
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.
WARNING: This story contains distressing details.
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