Motor neurone disease (MND) is a condition that affects the nerves known as motor neurones. People living with MND and clinicians acknowledge that patient information about symptom management can be improved. This project developed a suite of resources to support MND patients attending Royal Brisbane and Women's Hospital (RBWH). 

MND affects nerves in the brain and spinal cord that help to tell the muscles what to do. People living with MND can find it difficult to swallow saliva, which can spill from the mouth or cause choking. 

Patients attend the RBWH MND Clinic regularly and see a large team of doctors and allied health professionals who give clinical advice to self-manage these symptoms at home. However, patients can find difficult to recall the information provided, which can result in emergency trips to hospital to manage saliva-related symptoms including excessive coughing, choking or difficulty breathing. 

This project aimed to provide practical accessible information to MND patients, providing better information about self-managing symptoms at home to prevent complications between clinic visits.

The research team collaborated with MND patients, their carers and community speech pathologists to create handouts and videos accessible through the RBWH MND Clinic internet page, providing resources to support these patients and their families at home. 

Thirty patients trialed the handouts and videos resources. Feedback from patients, carers and speech pathologists indicated that the resources were easy to access from the internet page and helped to troubleshoot saliva symptoms. However, it was acknowledged that symptoms continue to change as the disease progresses and additional advice on symptom management was often required from speech pathologists between clinics. 

Future research is required to investigate optimal ways of providing this help. 

Link to the MND resources - Managing saliva problems in Motor Neurone Disease (MND) - Royal Brisbane and Women's Hospital (health.qld.gov.au)