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Meeting the needs of people living with MS, their families and carers

Photo of lady at desk on laptop
19 August 2019

Released today (Monday 19/8/19) a Report of the key results of a study into the needs of people living with MS, their families and carers.

A big thank you to all those who participated in this important project!

MS Australia releases findings of national research study: Living with Multiple Sclerosis in 2019.

The multiple sclerosis (MS) journey has changed significantly over the past decade with regard to diagnosis, treatment and management options and cost of the disease.  These changes, coupled with the social, technological, policy and economic trends in Australia and overseas, have had a dramatic impact on the service landscape.

In some cases these changes and trends present challenges for the sustainability of existing business models and also provide the opportunity to redesign services to ensure people with MS, their families and carers receive the right support at the right time in the right place.

The MS family of organisations recognises the need to respond to these challenges using evidence about the specific and emerging needs of people affected by MS to support decisions about what, when and how to offer services.

To this end, MS Australia on behalf of its four State/territory member organisations (MSWA, MS Queensland, MS Limited [ACT/NSW/TAS/VIC] and MS Society of SA/NT) engaged KPMG to conduct independent research with people living with MS, their families and carers to better understand:

  • The experience of people living with MS, their families and carers,
  • The extent to which they are satisfied with current supports, services and information and any unmet demand, and
  • The emerging services that are likely to meet their needs into the future.

The Report of these research findings has now been released.  Incorporating well over 2,000 responses from a broad cross-section of the MS community across the nation, the Report provides a rich source of insight into the lives of people with MS, their families and carers and their needs at the various stages of their MS journey.

Among the key findings:

  • 64% reported an effect on employment and ability to earn an income
  • 27% (1 in 4 people) had an unmet service need
  • 79% of people diagnosed with MS were taking a disease-modifying therapy (medication that modifies the activity of the immune system to slow the frequency and severity of attacks to the central nervous system)
  • 69% of carers reported that caring has an impact on family and relationships

Marcus Stafford, CEO, MSWA said, “We’ve always known that the time of diagnosis is a ‘ground zero’ moment for people with MS and other neurological conditions.  Knowing the specific information that newly diagnosed people are seeking at this incredibly emotional stage of their journey, helps ensure we provide the right services and support at the right level at the right time”.

“Carers play a vital role in supporting people living with MS”, said Gerard Menses, CEO, MS Qld, “The research will help us provide better assistance to the thousands of unpaid carers who require the same first-hand advice, information and connection to supports, as people living with MS”.

Christine Hahn, Acting CEO, MS Society of SA/NT said, “The MS community, like the broader community, are increasingly using technology to access information and in many cases, to monitor their disease journey.  The Report tells us that for those not already using it, there are strong levels of interest (61%) in using technology to increase connectivity with service advice and support and to connect with peers. This helps us to build and expand these channels”.

John Blewonski, CEO, MS Limited (Vic, NSW, ACT and Tas) said, “We know that MS has a huge impact on employment and incomes, and the finding of a 36% drop in full time employment for those still of working age (under 55 years) is significant.  The impact on carer’s capacity for employment (a drop of 30% in carers employed full time) is also significant.  That’s why we are committed to keep expanding our MS Employment Support Service, so people with MS can stay employed longer. Our team provides a range of support especially assisting with workplace arrangements and fatigue management.”

Deidre Mackechnie, CEO, MS Australia said, “The Report will provide MS Australia with valuable evidence for its ongoing advocacy at the national level, with a particular focus on advocating for systemic improvements in the health, aged care and disability sectors.  I would like to take this opportunity to thank all those people living with MS and carers who participated in this study – their insights will help us shape how we meet their needs into the future.”

Prevalence of multiple sclerosis in Australia

Prevalence of multiple sclerosis in Australia map

Source: The Health Economic Impact of Multiple Sclerosis in Australia 2017 report, commissioned by MS Research Australia and prepared by the Menzies Institute for Medical Research, University of Tasmania, August 2018

To see the Report visit: https://www.msaustralia.org.au/about-ms/information-sheets