Guest Feature: Better communication vital for Motor Neurone Disease

By Carol Birks

“To be disabled without technology is unthinkable.” It’s a sentiment shared by many of the 1,500 people living with motor neurone disease (MND) in Australia.

Each day two Australian people die of this cruel disease and two people are diagnosed. Although MND was first described nearly 150 years ago there is still no known cause, no cure and no effective treatments.

People living with MND and their carers face a spiralling series of losses— loss of speech, swallowing, mobility and breathing—with severe impact on physical, emotional, psychosocial and financial well being.

Maintaining communication is key to maintaining quality of life for people living with MND and their families. Communication is impacted not only by difficulty with and, ultimately loss of speech, but also increasing upper limb weakness. This progressive loss of speech and function has led to the MND community striving to adapt and adopt emerging technologies to meet the communication needs of people living with MND in Australia.

Keeping connected across the country

The National Relay Service (NRS) has for decades allowed communication between text and voice over the telephone or internet using relay officers. Calls can now be made over the web, meaning the service is even more convenient now with the advent of smartphones and tablet devices.

Access to expert multi and interdisciplinary care is integral to maximising quality and length of life of people with MND. Many people with MND do not have access to expert health professionals and specialists, and travel can be very difficult as the disease progresses. Some specialist MND clinics based in the capital cities have already started e-consultations.

The introduction of the NBN, in partnership with appropriate Medicare reimbursement, offers further opportunities to improve access, coordination and quality of health care for people living with MND in regional, rural and remote communities.

Together with the NBN, the Personally Controlled Electronic Health Record (PCEHR) is beginning to assist in the streamlining access to health services and patient information across a person’s care journey. We are also keen to see Advance Care Directives added to the PCEHR, in part to help prompt people to have discussions with their loved ones about their wishes for end-of-life care.

Emerging technologies

Emerging technologies are revolutionising the way that we communicate and operate as a society. While this change is welcome by the MND community, it also presents several challenges.

Since MND is a rapidly progressive degenerative condition, we need to find ways of providing access to new technologies in a timely manner to patients and their carers.

Some of the emerging technologies with most benefit to people with MND are ones which help overcome loss of limb function and/or speech difficulties.

For instance, computer eye-tracking devices and scanning programs for word processing, text to speech, email, web browsing and social networking can make a massive difference to someone who cannot otherwise communicate freely. The use of voice recognition software and tailored tablet and smartphone apps are also becoming popular.

Along with the software and hardware, education is vital to ensuring equitable access to emerging technologies. Speech pathologists and occupational therapists are often the primary providers of information on communication technologies. MND associations as well as networks of private and government organisations can also assist with access and education.

It’s encouraging to see how life for someone with MND is being made brighter and fuller by improvements in these technologies and system wide programs. This important work needs to continue.

Carol Birks is the National Executive Director of MND Australia: www.mndaust.asn.au. MND Australia and the six state association members work together to advance, promote and influence local, state and national efforts to achieve the vision of ‘a world free from MND’.