Living with Multiple Sclerosis in 2019: The national research findings
Article from Autumn 2020 edition of Intouch Magazine

Living with MS in 2019With medicine and technology rapidly advancing, the MS landscape is changing, requiring responsiveness and adaptiveness from service providers. Considering all of this, it’s important to understand what it means to live with MS right now, and how this information can be used to better meet the needs of people living with MS and their families in 2020 and beyond. 

In 2019, Multiple Sclerosis Australia (MSA), together with MS state organisations, including MSL, commissioned professional services network KPMG to survey people living with MS, family members and carers across Australia. 

The survey aimed to determine the current and emerging needs of people living with MS, thereby informing our organisation on how best to serve these needs in 2020 and beyond.

KPMG surveyed 2,261 people living with MS and 135 family members and carers across Australia, between March and May 2019. 

The research brought into focus challenges people experience with access and affordability of services and revealed a keen interest in services beyond the medical, particularly in relation to those that support mental wellbeing and maintaining lifestyle.

Here are some key learnings of the research findings:

Newly diagnosed people need support with their mental wellbeing and maintaining their lifestyle.

It’s not surprising that the survey revealed that for many, the first few years following a diagnosis are filled with shock and turmoil and nearly all people seek medical information during this time. People between 16 and 34 years of age are more likely to also look for information that focuses on lifestyle and emotional support than those over 65.

In addition, 79% of people who were diagnosed in the last two years are on disease modifying therapies, indicating that there is an increasing number of people with MS who are living well, and likely to require fewer disability services in the future. 

People who are living well stated that they tend to rely on their informal network for support and are looking for wellbeing and lifestyle, as well as emotional support services.

Technology use is increasing, and people need accessible information about finding services.

Whilst the survey revealed that 60% of people who track their symptoms don’t use technology, it also revealed that technology use as a source of information, monitoring and connecting with others is increasing; people are now turning to cognitive brain training, symptom diary apps or wearable technology, particularly at diagnosis. 

Among those who self-monitor, 40% use technology and out of those not yet using technology, 61% said they’re open to the idea. 

45% of people use websites as a source of information at diagnosis, but only 56% reported finding them helpful, with the rest indicating that the content is not specific enough, does not relate to their life with MS and does not support them emotionally.

Despite the changes to the MS landscape in terms of treatment options and information, there are still many people with unmet needs.

In fact, one in four people reported an unmet service need that was often caused by affordability or accessibility.
People who are ineligible for the National Disability Insurance Scheme (NDIS) need to know what services are available to them. They stated that affordability and not knowing how to access services were the biggest hindrance, and 27% of respondents said they had an unmet need stemming from this. 

The people most likely to have unmet needs are younger people who are living well, and currently, the largest crucial unmet service needs are physiotherapy and massage therapy.

How do people feel about MS organisations?

Half of the respondents stated that MS organisations were their point of contact for further information about selection of new supports and services. 

41% of people with MS frequently use four or more services, including neurologists, GPs, physio and massage therapists, MS or continence nurses.

Whilst MS services were used less frequently than neurologists, those who did contact MS staff and MS nurses said that they were helpful. 

In summary…

The Living with MS in 2019 national research findings highlighted difficulties people experience with access and affordability of services and revealed a strong interest in those services that support mental wellbeing and maintaining lifestyle. It also informed MSL’s five-year Strategic Direction, which you can read about on page 8.

MSL is committed to making the necessary adjustments in order to keep helping people with MS live their best lives. We look forward to improving and expanding our services in 2020 and beyond.

To view the full report, visit ms.org.au/living-with-MS-in-2019, or call MS Connect on 1800 042 138 to request a free hardcopy.



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