The Fetal Alcohol Spectrum Disorder (FASD) Patient Journey Project

Submitted by: Randal Bell

After concluding one of the many interviews I conducted for this project, I sat for a while and listened to a caregiver describe the joys and frustrations of raising a child with FASD.

After describing heartbreaking scenarios and disappointments that would crush most parents and damage most families, she quietly said “children with FASD are misunderstood, because they misunderstand.”

In 2019, Alberta’s FASD Cross Ministry Committee commissioned a patient journey project to identify what was working, what was not working and what was missing in services delivered to persons with FASD. Having completed two patient journey projects examining the needs of Indigenous populations in addictions and mental health, I had become a true believer in patient journey methodology.

Patient journey methodology gives the person using the service a voice. It gives the service user an opportunity to participate in the development and enhancement of services and it ensures the services are delivered in a way that works for persons with FASD. Patient journey methodology emphasizes the importance of not only listening to service-users, but learning from them and becoming partners in client-centred care.

Patient journey methodology can also be a powerful tool for service providers. With service users highlighting gaps in service delivery and recommending service delivery alternatives, service providers can allocate resources in a way that is effective and efficient, maximizing benefit to the agency and the service users.

The FASD patient journey project team conducted 130 interviews of caregivers, service providers and persons with FASD in 36 communities across Alberta. After analyzing months of qualitative and quantitative data, we’ve highlighted the unique and complex service needs that were identified by persons with FASD, their caregivers and their service providers.

By engaging persons with lived experience, we were able to identify and inform service enhancement opportunities in FASD awareness, FASD assessment and diagnosis, FASD care planning and transitions, community-based FASD services and supports, addiction and mental health services, housing support services, education services, and correctional services.

I challenge all FASD service providers to not only listen to the voices in this report but also to listen to the voices of their own service users. For it is only when we understand the unique and complex needs of our service users, that we will have hope of helping those that are misunderstood.

Read the full FASD Patient Journey Report.

Randal Bell is employed by Alberta Health Services as a Senior Advisor in Addictions & Mental Health. He is currently the Co-Chair of Alberta’s FASD Cross Ministry Committee. Randal has held various management positions in social care and health organizations in Saskatchewan, Alberta, the UK and New Zealand. Randal holds a Bachelor’s Degree in Social Work and has certifications in project management, change management and quality improvement. Randal resides in Edmonton with his wife “Liv”, their baby “MacKenzie” and their bulldog “Gizzy.”

Leave a Reply