Sarah Turnbull says she waited six years before her three-year-old Blake saw a pediatric gastroenterologist. Now it seems like it could go on forever as Saskatchewan’s only doctor in the specialty is set to leave next May.
“When she was one year old, they found an unknown tissue on her liver. She’s been on the waiting list ever since,” Turnbull said.
“The second reason is that she has a neurogenic gut that requires special treatment, and we’ve never seen a gastroenterologist for that either.”
When Blake was first put on the waiting list, there were two pediatric gastroenterologists in the province. So far, Turnbull has relied on parent groups and the internet to treat her daughter while they wait to see Dr. to meet Simone Nicol, the survivor.
Now, the Saskatchewan Health Authority (SHA) has confirmed that Nicol will be closing her Saskatchewan practice effective May 12 and is working to halt all services. The SHA declined to comment on the details “due to data protection legislation”.
“I don’t know what the plan is for us. It’s stressful,” Turnbull said. “As a single mother of two children, there is already burnout. I am concerned about her liver as it has never been looked at.”
Turnbull said she had been to Parliament House on several occasions to speak about it and had been assured by the government that things were getting better. Instead, she says the situation left her alone to take the “second full-time job” tending to Blake’s medical needs.
“Google is not the doctor, nor any other parent. I don’t have a medical degree, but I am my own doctor.”
She said Blake was not even able to see a specialist after being hospitalized with intestinal problems two years ago.
“I’m not mad at the doctors as they are overwhelmed and unsupported,” she said.
“There is obviously a crisis when all these specialists leave. They leave to be recruited elsewhere as they are wanted. What are we doing to help them stay?”
CBC asked Dr. Nicol for comment but has been referred to the SHA.
In an email statement Tuesday, SHA said it is actively recruiting to fill pediatric positions, including pediatric gastroenterologists, with targeted recruitment strategies for Saskatchewan pediatric graduates, other Canadian graduates and international physicians. It said the ministry was working on recruitment and retention.
“The Saskatchewan government is also establishing an independent agency dedicated to recruiting and retaining physicians, nurses and other high-priority professionals,” the statement said.
“In the meantime, the leadership team at SHA is working with other provinces to implement a plan for remote service delivery similar to what we have had in the past.”
SHA did not respond to questions about current wait times and availability of gastroenterologists in the province.
The Department of Health said it could not conduct an interview on these issues, but offered an email statement that said “doctor recruitment and retention is a top priority.”
Take matters into your own hands
Lisa Glines, 41, has two daughters with Alagille syndrome, which affects multiple organs, including the fact that her liver doesn’t clean her bloodstream properly, leading to a “buildup of toxins that cause terrible itching.”
“Our older daughter, Ella, regularly woke up with blood on her sheets because she scratched until she bled in her sleep. There’s nothing we can do as parents,” Glines said.
“You itch from the inside out.”
Glines’ daughters were on the waiting list earlier than Turnbull’s and were able to Dr. See Nicol after 18 months. Glines said she was saddened by Dr. Hearing Nicol’s departure but not surprised.
“I saw this coming,” she said. “It’s frustrating and heartbreaking to watch.”
One of Glines’ main concerns is interference with the specialty drug maralixibat, used to treat Ella’s itching, and which requires a prescription from a gastroenterologist. Glines said losing access would put her daughter “in a difficult position”.
A year ago, Glines approached the SickKids pediatric care team in Toronto “to make preventive appointments to build a care team there for exactly these reasons.”
Glines said she’s grateful to have appointments coming up in Toronto this summer, but acknowledges that not everyone has the financial capacity to access such services.
“As parents of children with complex medical conditions, we already have barriers. We’re vacationing for medical travel,” she said.
Like other parents, Glines said she feels empathy for Nicol, who she says has had to work incredibly hard without adequate government support.
“This is not a new problem. This has been going on for years and we have the same platitude from the government that recruits and keeps them. The status quo doesn’t cut it, it doesn’t fill in the gaps,” Glines said.
“It shouldn’t be like that.”
