Parents feel helpless as Saskatchewan's only pediatric gastroenterologist prepares to leave

Sarah Turnbull says the wait for her three-year-old Blake to see a pediatric gastroenterologist was going to be six years. Now it seems like it could be endless, with Saskatchewan's only doctor in that specialty set to leave this coming May.

"When she was one year old, they found an unknown tissue on her liver. She has been on the waitlist since then," Turnbull said.

"The second reason is that she has a neurogenic bowel that requires special management, and we've never seen a gastroenterologist about that either."

There were two pediatric gastroenterologists in the province when Blake was first added to the waitlist. So far, Turnbull has relied on parent groups and the internet to treat her daughter as they waited to meet Dr. Simone Nicol, the remaining one.

Now the Saskatchewan Health Authority (SHA) has confirmed that Nicol will be closing her practice in Saskatchewan as of May 12 and is working on winding down all services. The SHA would not comment on specifics "due to privacy legislation."

"I don't know what the plan is for us. It's stressful," Turnbull said. "As a single mom of two kids, there is already burnout. I'm worried about her liver, as she has never been looked at."

Turnbull said she has been to the legislative building multiple times to speak about this and that the government assured her that things would improve. Instead, she says the situation has left her alone to take the "second full-time job" of caring for Blake's medical needs.

"Google is not the doctor, neither is another parent. I don't have a medical degree but I'm left to be my own doctor."

She said Blake wasn't even able to see a specialist after being hospitalized for bowel issues two years ago.

"I'm not mad at the doctors, as they are overwhelmed and not being supported," she said. 

"There's obviously a crisis when all these specialists are leaving. They are leaving to be recruited somewhere else as they are sought after. What are we doing to help them stay?"

CBC reached out to Dr. Nicol for comment, but was referred to the SHA.

In an email statement Tuesday, SHA said it is actively recruiting to fill pediatric vacancies, including pediatric gastroenterologists, with targeted recruitment strategies for Saskatchewan pediatric graduates, other Canadian graduates and international physicians. It said the ministry is working on recruitment and retention.

"The Government of Saskatchewan is also establishing an independent agency dedicated to the recruitment and retention of doctors, nurses and other high-priority professions," the statement read.

"In the interim, the SHA's leadership team is working with other provinces to implement a remote service delivery plan similar to what we had in place in the past."

SHA did not respond to questions about the current wait times and the availability of gastroenterologists in the province.

The Ministry of Health said it could not provide an interview regarding these questions, but offered an email statement saying, "recruitment and retention of physicians is a top priority."

Taking matters in own hands

Lisa Glines, 41, has two daughters with Alagille Syndrome, which affects multiple organs, including making their livers not properly cleanse their bloodstreams, resulting in a "build-up of toxins which causes horrible itches."

"We regularly would have our elder daughter, Ella, waking up with blood all over her sheets because she would be scratching in her sleep until she bled. There's nothing we can do as parents," Glines said.

"They are itching inside out."

Glines's daughters got on the waitlist earlier than Turnbull's and were able to see Dr. Nicol after 18 months. Glines said she was sad to hear about Dr. Nicol's departure, but not surprised.

"I foresaw this coming," she said. "It's frustrating and heartbreaking to see."

One of the main concerns for Glines is the disruption of the specialized medicine Maralixibat, used for Ella's itches, which requires a gastroenterologist's prescription. Glines said losing access would put her daughter "in a tough place."

A year ago, Glines reached out to the pediatric care team at SickKids in Toronto, "pre-emptively making appointments to establish a care team there for these exact reasons."

Glines said she is thankful to have appointments lined up in Toronto this summer, but recognizes that not everyone is in a financial position to access services like that.

"As parents of children with complex medical issues, we already have barriers. We take holidays for medical travel," she said.

Like other parents, Glines said she feels empathy for Nicol, who she said has had to work incredibly hard without enough support from the government.

"This is not a new problem. This has been going on for years and we have the same platitude from the government that they are recruiting and retaining. The status quo isn't cutting it, it's not filling the gaps," Glines said.

"It shouldn't be this way."