Health Policy and Systems
Daniyal Kashif, MHSc
Researcher
Universtiy of Toronto
Oshawa, Ontario, Canada
Carl Froilan D. Leochico, MD, MHSc
Physiatrist, Clinician-Investigator
Toronto Rehabillitation Institute, University of Toronto Faculty of Medicine, St. Luke’s Medical Center (Phillipines)
Toronto, Ontario, Canada
Haseel Bhatt, BSc, MSc
Movement Disorders Physiotherapist, Adjunct Lecturer
Neurology Rehab, University of Toronto
Toronto, Ontario, Canada
Matthew Burke, MD, FRCPC,
Cognitive Neurologist, Neuropsychiatry Residency Lead, Clinical Research Co-Lead
Sunnybrook Health Sciences Centre, University of Toronto Faculty of Medicine, Concussion Ontario Network
Toronto, Ontario, Canada
Sarah Lidstone, MD, FRCPC, PhD
Medical Director, Assistant Professor
Integrated Movement Disorders Program, University of Toronto Faculty of Medicine
Toronto, Ontario, Canada
Meiqi Guo, MD, MSc
Physiatrist and Brain Rehabilitation Program Medical Director
UHN-Toronto Rehab; University of Toronto Faculty of Medicine
Toronto, Ontario, Canada
Gilbert Sharpe, LLB and LLM
Instructor, Mentor-in-Residence, Professor
University of Toronto Faculty of Medicine
Toronto, Ontario, Canada
Edyta Marcon, MHSc, PhD
Program Director
Translation Research Department, University of Toronto
Toronto, Ontario, Canada
Functional Neurological Disorder (FND) remains inadequately included in policy and research in various healthcare settings, including Canada, where patient voices and lived experiences have yet to be systematically explored. Hence, the study aimed to analyze patients’ and care partners’ challenges with the healthcare system in Ontario, Canada and their perspectives on how to improve FND care.
This qualitative study explored the lived experiences of individuals with FND in Ontario, Canada using a descriptive approach informed by patient journey mapping. Two focus groups were conducted with 11 patients and two care partners, following a semi-structured interview format. Participants were diagnosed with various subtypes of FND and receive treatment in different clinics around the Greater Toronto Area. Ethical approval was obtained, and all participants provided informed consent. Data were analyzed inductively using thematic analysis via NVivo.
Participants reported prolonged diagnostic delays (mean: 4.8 years), limited access to specialists, and widespread lack of FND knowledge among healthcare providers. Three major challenges emerged: searching for a diagnosis, accessing treatment, and seeking initial medical care—each marked by systemic gaps, stigma, and emotional distress. Patients described being misdiagnosed, dismissed, and forced to self-advocate, often relying on personal research to understand their condition. Treatment access was hindered by high costs, lack of public funding, and limited availability of FND-informed services. This study highlights the urgent need for systemic reform in FND care, as patients and families face prolonged diagnostic delays, fragmented services, and widespread stigma. The feedback provided by the participants were translated into a patient journey map, and a list of patient recommendations, these items serve as crucial considerations for healthcare professionals and policymakers for the future of FND care in Ontario.
Conclusion:
