From a cosy Canmore cafe, the Rockies are a reminder of the worlds harsh, unforgiving nature.
Not that this has ever stopped humans trying to tame it.
The mountains stand tall, as do the Albertans beneath them, trying to navigate a different landscape.
Research into Tourette and OCD takes place in this province, embracing a society as diverse as the lands.
Canada is more than its stunning mountains. It is blessed with world class cities, and Calgary is no exception.
Ranked 7th in the EIU Global Liveability Index 2023, Calgary is setting a very high standard around the world.
For the Tourette and OCD community, this isn’t exactly a head-turner. Finding a better quality of life with these disorders isn’t as easy as packing bags and moving city. Even those in the most developed nations find access to treatment difficult, if there is any at all. Calgarians feel every thought and every tic like the rest of us.
But, there is an organisation providing support to those in Alberta.
The Tourette OCD Alberta Network
Julian Fletcher is the Program Coordinator at the Tourette OCD Alberta Network.
Made up of healthcare professionals, health researchers, educators and people with lived experience, the network has a ‘mission to increase capacity and improve access to comprehensive patient and family centered care for children and youth with TS and OCD province wide’.
Dealing with Disorder is very grateful for the opportunity to speak to Julian, for a better insight into the fantastic work he and the team are doing for those with Tourette and OCD.
Hi Julian! When and how did the network come about?
The network developed as a solution to a problem. Dr. Tamara Pringsheim, who has been Program Lead of the Tourette and Pediatric Movement Disorders Clinic at the Alberta Children’s Hospital since 2008, carried out qualitative research in response to a Tourette’s clinic in Edmonton, a city in the north of Alberta, closing unexpectantly in 2018. The results showed that Albertan children and families affected by these disorders were in crisis mode, and due to the complex nature of Tourette syndrome and OCD, emergency room visits and hospitalizations had increased. This tremendous service gap delivery in Alberta led to the formation of the network in 2020, funded by a health outcomes improvement fund grant. Our mission was the solution:
to increase capacity and improve access to comprehensive patient and family care for children and youth with Tourette syndrome and OCD province wide.
We mentioned the networks mission above, could you go into a little more detail on how you are reaching these goals?
Broadly, the overarching aim is to provide families with pathways to improved care. Our goal to achieve this is twofold. The first goal is to provide continuing education for healthcare professionals province wide, so patients and families can receive appropriate care in the communities they live. The second goal is to focus on three key priorities critical to improving the mental health of patients and their families: educational outreach, psychoeducation, and peer support.
In the past 3 years we have delivered nearly 30 online webinars, presented by expert clinicians, ranging from Exposure and Response Prevention for OCD to Comprehensive Behavioural Intervention for Tics for tic disorders; and 750 healthcare professionals in Alberta and across Canada have attended them live.
I provide psychoeducation to families whom I meet every week at the Tourette’s Clinic at the Alberta Children’s Hospital during their child’s clinical consultation with the neurologist. This entails providing in-clinic service support such as the provision of resources and access to our programs. I also provide in-service presentations in schools across Alberta; often, parents whom I meet at the Tourette syndrome clinic connect me to their child’s school. For students, this involves giving information and awareness presentations and doing empathy activities, whilst for teachers there is a greater emphasis on classroom strategies. Additionally, we regularly facilitate online psychologist-moderated discussion groups.
8 to 10 Albertan families (Alberta is 3.5 times bigger than the UK) meet weekly online over a 5 week period, and share their lived experience with other parents, guided by a psychologist whose expertise is in Tourette syndrome and OCD. Care navigation support is also available to patients and families, by telephone and email, who have specific inquiries about finding care, information about the disorders, or access to other supports.
How does the network work within/alongside University of Calgary?
The Tourette OCD Alberta Network works in partnership with the University of Calgary, which enables the organization to make use of several university programs. We are located at the university, and we use many of its services, for example, website hosting for our resource library, event promotion, and newsletter distribution. As members of the Tourette OCD Alberta Network are clinician scientists based at the University of Calgary, there is a strong approach to the evaluation of our programs and measurement of outcomes. Therefore, we foreground quality improvement and academic research, enabling the benefit of knowledge translation to other organizations.
Do you currently collaborate with other organizations or networks, both within Alberta and across Canada, on Tourette syndrome and OCD awareness and advocacy?
The Tourette OCD Alberta Network has established strong collaborations across Alberta Health Services (AHS), Alberta boards of education, and academic institutions which has allowed our program to thrive. Our strong partnership with AHS Provincial Addiction and Mental Health Programs and Services has been an important facilitator in allowing us to reach health care providers and patients and families affected by Tourette syndrome and OCD. The absence of patient support organizations in Alberta specifically focusing on these disorders was a catalyst for the initial formation of the Tourette OCD Alberta Network.
Is there anything coming up for those in Alberta to look out for in the coming months regarding events and/or volunteer work?
As the network evolves into a full not-for-profit organization and our funding model changes, a core aim is to build communities of families to help promote our programs and disseminate information. Our remit has the sharing of lived experience at its core, and in a geographical area as vast as Alberta, it is challenging to create the hubs of communities we envisage. To that end, we have arranged in-person meet up groups in Calgary and Edmonton during October. The idea is for families to meet up informally, in the period of ‘back to school’, which can be such a fraught time parents of children with these disorders. At the meet ups we will also offer advice regarding how to approach leveraging the in-school resources available to students affected by Tourette syndrome and OCD.
Many thanks again to Julian and the Tourette OCD Alberta Network, for the article and contribution to support those with Tourette and OCD.
Website and social media links:
Network website: The Tourette OCD Alberta Network
Network Twitter/X: @ts_ocd
University of Calgary Facebook: @universityofcalgary
University of Calgary Twitter: @ucalgary