Published: December 2024
Consumers with functional neurological disorder report improved outcomes after attending a virtual group program. Approximately 70 consumers have taken part across nine groups, since 2020.
Clinical psychologists from the Illawarra Shoalhaven Local Health District (LHD) established the program, which gives consumers the strategies and tools they need to:
- manage their symptoms
- improve daily functioning
- enhance their overall quality of life.
A randomised controlled trial is underway to document the benefits of the program. It aims to develop evidence to support other districts to set up similar programs.
What is functional neurological disorder?
Functional neurological disorder (FND) occurs when there is a disruption to how the brain functions and the body responds. While having no underlying structural or organic cause, this psychological condition displays neurological symptoms such as:
- motor weakness
- gait disturbances
- tremors and dissociative episodes, including non-epileptic seizures.
FND significantly impacts a person's quality of life. Symptoms can mimic other neurological conditions, making diagnosis and treatment challenging.
Reasons for change
Accessing ongoing treatment for FND can be difficult. Often when a consumer leaves hospital, there is little support. To fill this gap, a virtual multidisciplinary and cognitive behavioural therapy group program was created for people in the Illawarra Shoalhaven and Southern NSW LHDs.
Each group has up to eight consumers who attend six sessions facilitated by two clinical psychologists. Guest presenters include a dietitian, physiotherapist, neuropsychiatrist and a consumer with lived experience. Consumers learn grounding techniques and other skills to manage symptoms.
Consumer engagement
“I felt heard and respected. I have a kit of tools to manage FND and move forward.”
“The tasks were achievable. Everything was written in workbooks and discussed in the session which helped my understanding.”
Consumers were actively engaged via focus groups during the planning and design phases of the program. This feedback informed the structure and content of the group.
At the end of the six-week program, consumers submit an evaluation form that covers the structure, resources and content. This feedback will be used to update the program when the randomised controlled trial is completed.
Program results
Participants have reported positive outcomes from the program. Surveys are completed before the program commences and after it has finished, which have found:
- 91% of consumers reported improvement in symptom management
- 93% of consumers rated participating in the group via videoconferencing as ‘excellent’ or ‘good’
- improvement in all quality-of-life indicators was reported at the three-month follow up.
Structure
Program goals
- Improve symptom management by increasing confidence in diagnosis and reducing symptom frequency and severity
- Reduce psychological distress associated with symptoms
- Improve consumer quality of life
- Reduce potentially preventable emergency presentations
Program team
- Clinical psychologists
- Physiotherapist
- Dietician
- Clinical neuropsychologist
- Neuropsychiatrist
- Consumer with lived experience
Model of care
-
Referral
Referral received from neurologist, psychiatrist, clinician or the consumer self-refers. Documented diagnosis of FND is required. -
Clinical interview
Baseline clinical interview with clinical psychologist, neuropsychological assessment and questionnaire completed. -
Group sessions
Consumer attends six weekly group sessions for 2.5 hours, via Pexip web conferencing. Session is facilitated by a clinical psychologist. Rotating multidisciplinary topics include:- physiotherapy
- dietetics
- neuropsychology
- neuropsychiatry
- consumer presentation by FND Support Services Australia.
-
Assessments
Assessments after the six sessions and a three-month follow up.
Key enablers
- Consumers and carers
- Neurology and neuropsychiatry, Wollongong Hospital
- Allied health services, Port Kembla Hospital
- Mindgardens Functional Neurological Disorders Clinic, The Prince of Wales Hospital
- FND Support Services Australia
- Functional Neurological Disorders Clinic, Mater Hospital, Brisbane
- easy management and functionality to support group sessions, privacy needs (lock the room) and large tile display to see faces of consumers and clinicians
- web-based platform removes need for consumers to download an application
- single link for all sessions enables participants to bookmark it for easy access.
Impacts and outcomes
Consumer benefits
- Removes barriers to treatment, e.g. mobility, travel
- Consumer can participate from home
- Improves symptom management by enabling real-life experience to be mimicked, strengthening self-management skills and increasing positive outcomes
- Improves consumer experience
Clinician benefits
- Virtual setting delivers a more appropriate response to FND symptoms. When a consumer displays symptoms during a session, the other attendees continue the session while a clinician supports the consumer to self-manage
- Enables flexible scheduling
- Can involve multidisciplinary team members from multiple locations
- Increases awareness of FND among health staff
System benefits
- Improved self-management strategies reduces emergency department presentations
- Significantly reduces treatment wait times
Risk mitigation during sessions
If a consumer experiences symptoms during the session, there is a risk mitigation protocol to ensure appropriate action.
- Participants are required to update contact details, including phone numbers and addresses, to ensure timely contact, if needed.
- A symptom management plan is developed with each consumer at their clinical interview, before they attend a group session. This enables clinicians to understand the person’s symptoms and agree on how to manage those symptoms.
- Clear instructions are provided at the first group session, advising each participant has an individualised symptom management plan to follow if they experience symptoms.
- Two clinical psychologists are always present. This enables one to support a consumer experiencing symptoms while the other continues to facilitate the group.
- Symptom management plans support consumer self-management and escalation if required. Some examples include:
- practicing grounding strategies
- taking a break from the screen
- consumer and clinical psychologist communicating directly via predetermined mobile phone
- clinical psychologist notifying carer or next of kin.
Research initiatives
A randomised controlled trial is evaluating the multidisciplinary and cognitive behavioural therapy approach on consumer outcomes. Meanwhile, Royal Perth Hospital is trialling the program.
Future direction
- Complete the randomised control trial and publications.
- Further research to explore predictors of outcomes.
- Apply for specific funding to increase frequency of groups and expand into other local health districts.
Acknowledgement
We acknowledge the following people for their support and information provided for this Spotlight.
- Dr Danielle Feros, Clinical Psychologist, Illawarra Shoalhaven Local Health District
- Dr Samantha Broyd, Clinical Psychologist, Illawarra Shoalhaven Local Health District
- Dr Matthew Macfarlane, Neuropsychiatrist, Wollongong Hospital
- People living with FND in the Illawarra Shoalhaven and Southern NSW Local Health Districts