‘Living with Multiple Sclerosis in 2019’ Report Released
Living with MS has changed significantly over the past decade with many changes in the diagnosis process, treatment and management options and the cost of the disease. These changes along with many other changes in Australia and internationally, have had an impact on services.
These changes allow organisations like MS Queensland to review their services to ensure people living with MS, their families and carers are receiving the right support at the right time and in the right place. MS Queensland along with other MS societies recognise the need to use evidence about the specific and emerging needs of our community to inform decisions about our services.
This is why, MS Australia along with MS Queensland and other MS societies across Australia, commissioned research to understand unmet demand and emerging needs of people living with MS, their families and carers. We sought 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 ‘Living with Multiple Sclerosis in 2019’ report was developed using the more than 2,000 responses from a range of people in the MS community. It provides insight into the lives of people living with MS, their families and carers and their needs at the various stages of the MS journey.
Some of the key findings include:
- 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
- 69% of carers reported that caring has an impact on family and relationships
MS Queensland will now use this research along with other research to inform its services and advocacy priorities.
Read the report here: Living with Multiple Sclerosis in 2019 Report