Stephanie van Hilten has been a respiratory physiotherapist for 34 years, working in many areas of the cardiothoracic specialty - intensive care, surgical, cardiac, rehabilitation, sleep and neuromuscular disorders. In 2021 she moved solely into the community space where she sees patients in her clinic and in their homes - many of those home visits are to people living with motor neurone disease.
Stephanie has seen first-hand the difference that a cough assistance machine can make to people living with MND.
"I asked one of my ladies living with MND how her access to a cough assist device has impacted her. She told me she felt if she hadn't been using a cough assist device for the past year, that she would not still be alive today. She is a single parent with four daughters, so every day with her beautiful children is precious. She has NDIS funding which has assisted in the cost involved in hiring this device, without that funding, her access to the device would be difficult and this may well have affected her longevity,” Stephanie said.
“A cough assist device is life-changing for those with MND who struggle with secretions. Imagine having secretions and not being able to clear them. A constant feeling of choking,” she said.
“To have access to a cough assist device can be life-changing and life extending. Some people using a cough assist device may need to use this device 6 or more times a day to clear retained secretions. Just one day without clearing those secretions can lead to a life threatening lung infection.”
Unfortunately, these life-changing devices are not readily available to people living with MND.
“Cough assist devices are not easily accessible for anyone at the moment. Currently the supply of devices into Australia is limited, and each device costs $10-11,000.00 and often there is a wait time on ordering. There is some limited access to rental devices and these can cost up to $600 a month to rent, which is prohibitive for those without NDIS support,” Stephanie said.
“Those with NDIS may have access to funding to pay for these devices, while those over 65 and without adequate funding have no support. People who are over 65 and ineligible for NDIS are provided very limited funds with no avenue for appeal. This funding is not sufficient to support their carer and equipment needs, let alone the costs of cough assist or ventilation. Currently, there is extremely limited access to free cough assist rental devices.”
Whilst many people experience significant changes to their breathing in the course of their disease, some will find issues with their breathing is one of their first MND symptoms, leading to their diagnosis.
“People with MND who have excess secretions and a weakened cough are at risk of choking, chest infections and an earlier death. If there is generally limited availability of devices, and the devices that are available are expensive and out of reach of those without NDIS funding, then clearly, if more devices are made available it can only be a win for all. These devices are life changing and life extending, everyone should have equal access to them,” Stephanie said.
This winter, we are raising funds to purchase these devices vital for the care of many of the people we assist each and every day.
“A cough assist device is expensive to purchase, and indeed the ongoing cost of rental is also quite high considering this is only one piece of equipment a person living with MND will need to assist them to manage their day to day needs," Stephanie said.
“Supporting this appeal will help to provide access to vital equipment that can help improve the quality and duration of a person living with MND. This disease is cruel and those affected struggle on a daily basis. Anything that helps to improve their function, extend their life and ease that struggle in any way should be accessible to all regardless of age and funding.”
Your support means we can give people living with MND, their carers and families, a Breath of Hope as they face motor neurone disease - click here to donate to our 2024 Winter Appeal
(All donations $2 and over are tax deductible)