future uncertain for unique b.c. genetic counselling clinic for people with psychiatric disorders
4 minute read
adapt clinic director dr. jehannine austin.
richard lam
/
vancouver sun
a first-of-its-kind clinic that has been providing genetic counselling for people living with psychiatric illnesses and their families for the past 11 years faces an uncertain future.
the provincial health services authority, which oversees specialized health services in b.c., told postmedia recently that the adapt clinic was undergoing an evaluation to determine if resources were being used efficiently and effectively.
but in a blog post last tuesday titled “eulogy for a clinic,” dr. jehannine austin, the clinic’s director, said adapt was effectively dead and that its counsellors were going to be redeployed “to provide service for general genetics patients because the wait-list is so long” in b.c.
“i’ve fought this with everything i have because it feels so wrong. but i’m so bone tired … and there’s literally nothing more i can do,” austin wrote.
austin was part of a team based at b.c. women’s hospital that counselled an estimated 1,400 patients and their family members seeking help for conditions including depression, psychosis, bipolar or obsessive-compulsive disorders, and schizophrenia.
patients were provided free counselling on the role that genetics and the environment might play in those disorders.
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“while there is no genetic test for psychiatric or mental health disorders, genetic counsellors can look at your family history to offer you and your family a better understanding of why you might have mental health problems, and how you can protect your mental health for the future,” the clinic’s website said before it went dark.
“you’ll better understand the risks you face, as well as the risks that your children or other family members have of developing mental health problems,” it added.
the services did not require a doctor’s referral.
“it was all about helping people understand the factors that contribute to developing a psychiatric condition, and how to use this understanding to engage in self-management strategies to protect their mental health,” austin wrote in her blog post.
austin acknowledged that canadian health professionals have to “make decisions about how to allocate scant resources.”
“my objection is that the adapt clinic embodies … all of the principles and values claimed to be held dear by the health-care system that is closing it. that is what i find distressing.”
david bieber, representative of the health sciences association union, which includes genetic counsellors at the adapt clinic, confirmed the clinic is being converted to help patients who have not only psychiatric disorders but general genetic health disorders, such as prenatal loss.
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bieber lamented the loss of a clinic devoted exclusively to genetic counselling for people with mental health concerns. “we are concerned about the changes,” he told postmedia.
cheryl davies, chief operating officer of b.c. women’s hospital and health centre, said in a statement the adapt clinic has “demonstrated a consistently low volume of patients, and b.c. women’s hospital is evaluating the adapt clinic to determine if those under-utilized resources can also address the needs of the broader provincial medical genetics program, in addition to the patient profile it currently serves.”
in the absence of scientific explanations for mental illnesses, many patients believe they did something to bring it on themselves, austin told postmedia in a 2016 interview.
“i regularly speak to people who are convinced it’s their fault that they have schizophrenia because they smoked a lot of pot when they were younger. they feel that they must have triggered it somehow.”
the adapt clinic worked to dispel this notion.
“psychiatric illness is not your fault, and not your fate,” austin, a psychiatry and genetics professor at the university of b.c., wrote in their blog post.
adapt clinic’s counsellors conducted telephone appointments and outreach clinics to ensure those in rural b.c. communities could access services.
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jenna scott, co-director of ubc master’s program in medical genetics, said the clinic brought benefits to both the university and the province.
“to have an entire clinic focused on solely seeing patients who are concerned about their genetic risk of psychiatric conditions, as well as driving research and getting patient outcomes data, was huge.”
graduate students from across north america were drawn to the program because of the psychiatric genetic counselling training opportunities.
“it brought people here from ontario, the u.s., and elsewhere,” said scott.
since the clinic’s inception, its work has become a guide for others in countries such as the u.s., u.k., germany, australia and romania.
research out of the clinic showed patients provided with psychiatric genetic counselling were more likely to embrace positive self-management strategies, including taking medications or attending mental-health counselling when used as an adjunct to other forms of therapy.
scott said its reconfiguration “could potentially be increasing the burden of psychiatric disease on patients and families in b.c.”
for undiagnosed patients who came in concerned about their family’s history of mental illness, adapt counsellors helped them see that the power of prevention was in their hands.
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“they learned to combat high-stress levels with things like having a regular sleep schedule, talking to others about what they are going through, eating healthy food and avoiding certain activities.”
— with postmedia files
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