New research shows more Australians having their careers cut short by MS 

A new report shows that keeping your job when you have multiple sclerosis (MS) is difficult, with almost two thirds of people (64%) reporting a loss of full-time employment and income.

The findings of the Living with MS in 2019 – Customer Insights Report (with over 2,000 respondents) suggest that work capacity is significantly affected by the disease’s invisible symptoms before any physical disabilities set in.

Fatigue and cognitive impairment are the two main reasons why an employee with MS has to change their job, reduce hours, or retire early, a finding which is consistent with international studies.

John Blewonski, CEO, MS Limited said that the report’s findings are concerning, given that MS is most commonly diagnosed in people between the ages of 20 and 40 years, when they are on a career path trajectory and getting closer to the top of their earning potential. 

“With advanced options for therapy and care reducing the severity of disease progression and complications, people with MS are expected to live well for longer periods. The research shows people want more assistance to keep their employment,” said Mr Blewonski.

Most of the people who remained in employment had disclosed MS to their employer. Of note, 73% of people who had disclosed their MS to their employer were satisfied with their support, compared to the 24% who had not told their employer.

For people newly diagnosed with MS a key worry is that they will lose their job. Nina Dingey, who was first diagnosed about 20 years ago, was head of design for a leading clothing brand.

With a passion for fashion, always at the back of Nina’s mind was that her condition was going to make her lose her job. She revealed her condition to a supportive employer six years ago, and successfully now works as a garment technician measuring and assessing sample garments, as a full-time employee.

“MS affected the right side of my body, my right hand and my right leg. I got to the stage where I had to say something, and when I did it was a huge relief.  I’ve had a lot of support from my colleagues and the MS Employment Support Service (ESS) which set up a home office, where I work once a week. They also helped me with adaptations in my work environment and to set up a great NDIS plan.”

Nina now works with a roller mouse which means she doesn’t have to use her right hand and wears headphones to speak into a microphone for her computer to write for her. She also has a workstation at home.

With the report showing that one in four people (27%) have an unmet service need, Mr Blewonski said it’s crucial that services are accessible to the MS community.

“We are committed to keep expanding our MS Employment Support Service, so people living with MS can access the program and stay employed longer. Maintaining employment is an important part of helping people to live well with MS. Our team provides a range of support, especially assisting with workplace arrangements and comprehensive symptom management. We work with employers to implement strategies such as flexible work schedules, accessibility and making workspaces more efficient and comfortable,” said Mr Blewonski. 

Over half (53%) of the respondents rated information about lifestyle changes (including employment) as the most required information during diagnosis stage. For those who indicated their employment has been affected by their MS, the overall impact of MS is most frequently seen to be greatest. 

The impact on a carer’s capacity for employment (a drop of 30% in carers employed full time) was also significant, resulting in loss of income.  

The Living with MS – Consumer Insights report is available here. For the MS Employment Support Service please call 1800 042 138 or for more information visit the employment section of our website.

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