A new national study has helped paint the picture of life with multiple sclerosis (MS), including the supports, services and needs of people living with the condition, their families and carers.
The report Living with Multiple Sclerosis in 2019 has illustrated the significant changes of the MS journey over the last decade, including diagnosis, treatment and management options and cost of the disease.
MS Australia engaged with audit and advisory company KPMG Australia, on behalf of its four State and Territory member organisations, to conduct independent research with people living with MS, and their families and carers, to get a better understanding.
The study fielded over 2,000 responses from the Australian MS community.
Among the findings, 64 percent of responders reported an effect on employment and ability to earn an income, while 69 percent of carers reported that caring for someone with MS has had an impact on family and relationships.
In regards to meeting the needs of people living with MS, one in four people reported having unmet service needs.
The report also revealed 79 percent of people diagnosed with the condition were taking a disease-modifying therapy, a medication that modifies the activity of the immune system to slow the frequency and severity of attacks to the central nervous system.
Chief Executive Officer (CEO) of MS Western Australia, Marcus Stafford, says the time of diagnosis is often described as a ‘ground zero moment’ for people with MS.
“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,” Mr Stafford says.
CEO of MS Queensland, Gerald Menses says carers play a vital role in supporting people living with MS.
“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,” Mr Menses says.
Acting CEO of MS Society of South Australia/Northern Territory, Christine Hahn believes the report will help inform and expand on the use of technology in providing MS information, advice and support.
“The MS community, like the broader community, are increasingly using technology to access information and in many cases, to monitor their disease journey,” Ms Hahn explains.
“The report tells us that for those not already using it, there are strong levels of interest (61 percent) in using technology to increase connectivity with service advice and support and to connect with peers.”
CEO of MS Limited (Victoria, New South Wales, Australian Capital Territory and Tasmania), John Blewonski says the MS Employment Support Service, assisting workplace arrangements and fatigue management, will benefit from the findings.
Mr Blewonski explains, “We know that MS has a huge impact on employment and incomes, and the finding of a 36 percent 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 percent 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.”
CEO of MS Australia, Deidre Mackechnie thanks all who participated in the study.
“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,” Ms Mackechnie says.
“Their insights will help us shape how we meet their needs into the future.”