Miss Emily Brown1,2
1Queensland Health, 2Dietitians Association of Australia,
Motor neurone disease (MND) is a complex and progressive neurological disorder, requiring extensive multidisciplinary team input. Consumers living with MND in rural and regional communities often experience difficulties accessing specialist health care as a result of geographical isolation. Due to the nature of the condition, people with MND are at increased risk of social withdrawal, depression and a reported low quality of life (QOL). Additionally, carers and family members also commonly experience emotional, physical and psychosocial burden throughout the disease progression.
To increase consumer and family/caregiver knowledge of motor neurone disease and the treatment and support options available, decrease the feeling of social isolation, and improve overall QOL, the Community Health and Therapy Services (CHATS) team in Mackay developed a community group for consumers and family/caregivers. CHATS consumers with a diagnosis of MND were invited to attend the ‘Moving Forward with Motor Neurone Disease’ group, consisting of monthly sessions delivered by allied health (dietitian, speech pathologist, psychologist, physiotherapist and occupational therapist) and nursing clinicians. The group combines education and opportunities to speak directly to each health professional regarding any concerns outside of individual clinic appointments. Education sessions included information on symptoms associated with the progression of the disease and treatment and support options available, with the aim to provide consumers and family/caregivers the knowledge and confidence to be proactive and better prepared for their journey.
To evaluate the impact of the MND community group, experience and outcome measures from both consumers and family/caregivers will be reported to assess the impact of the group on quality of life and psychosocial parameters. The findings will inform future activities and interventions for consumers living with MND.
Emily Brown is an Accredited Practicing Dietitian, currently working in the Community Health and Therapy Services team in Mackay. Emily graduated from the University of Queensland in 2016 with a Master of Dietetic Studies, and has a strong interest and passion for providing nutrition support for people living with motor neurone disease. Since graduating from University, Emily has worked in multidisciplinary community health teams in both Brisbane and Mackay.