Lack of doctors for Edmonton’s Tourette clinic frustrates families
Families of children with Tourette syndrome feel rudderless now a specialty clinic at the Glenrose Hospital is missing key full-time health professionals.
In the last four months, two child psychiatrists and a full-time nurse have left the clinic, leaving patients with no dedicated psychiatrist, and a part-time nurse.
Affected children often grapple with anxiety, depression, suicidal thoughts, obsessive-compulsive disorder, and other conditions that make it complicated to manage, said Rachel Williams, president of
If there was no oncologist for kids in Edmonton, people would be crazy. People would be outraged.
the Edmonton chapter of Tourette Canada, and a parent of two children with Tourette syndrome.
Adequate communication about where to turn for help and treatment is lacking, Williams said. The emergency room and family doctors are no help in a crisis.
Tourette syndrome is a neurological condition that often manifests in tics, which are involuntary, repetitive movements or sounds. The concurrent mental-health problems mean patients turn to many health-care workers for treatment and management, such as occupational therapists, speech language pathologists, psychologists, psychiatrists, neurologists and others, said Mark Snaterse, Alberta Health Services executive director of addiction and mental health for the Edmonton zone, in a Friday interview.
Since January, one psychiatrist who founded the clinic and a longtime nurse retired, and the second child psychiatrist went on a one-year leave, Snaterse said. Although other health professionals at the clinic still see patients, none of them can manage medications.
Recruitment of a sub-specialized child psychologist has been unsuccessful, he said. The contingency plan is for family doctors to see Tourette patients, and consult on the phone with other child psychiatrists for medication management advice.
There are 38 child psychiatrists working in the Edmonton zone currently. It’s an increase from a decade ago, but half the number recommended by the Canadian Academy of Child and Adolescent Psychiatry for a city of Edmonton’s size.
Parents like Shauna Lee, who has three children with Tourette syndrome, feel they have nowhere to turn.
“If there was no oncologist for kids in Edmonton, people would be crazy. People would be outraged,” Lee said. “There would be such a different response.”
Her children, 15-year-old Jacob, 12-year-old Jasper, and nine-yearold Jenna are all creative, generous and smart, but their emotions and behaviour can be like a car with no brakes, Lee said.
Often rigid and fixated on routine, surprises or unwanted actions can set off a flurry of brain signals that can lead to violence and screaming, she said. Afterward, her children sometimes feel so guilty about the uncontrollable outbursts, they are suicidal and try to harm themselves.
Medication can manage their symptoms, but there’s no expert to see when their condition evolves, Lee said.
“Because they’re on so many psych meds at the same time, no one is willing to change anything,” she said. “It’s causing me to panic.”
Without specialized help, it’s a dangerous situation, she said. Parents need a full-time nurse they can reach quickly, and waiting lists to see a psychiatrist are monthslong.
The health authority’s job posting for a child psychiatrist is recruiting a half-time doctor for the clinic, which Williams doesn’t think is enticing enough. Alberta Health Services should offer more incentives for a recruit, and give all 167 clinic patients more information about where to go in the interim, she said.
“(A) family in serious crisis doesn’t know what to do anymore. Siblings are being hurt. Parents are being hurt.”