Basic needs left wanting for 20% people with MS

Prof Marita McCabe at Deakin University conducted the Needs Analysis

Nearly one in five Australians with multiple sclerosis (MS) struggle to have basic home modifications and equipment, including air conditioning, which is needed for them to manage their symptoms. For nearly half of them, it is due to their lack of funds to purchase and install. This is one of the key findings in the National MS Needs Analysis 2012 which surveyed nearly 2,900 people with MS; some 12% of the total group of people with MS in Australia. The next most prominent needs were assistance to manage MS in the workplace (allowing people to stay in employment) and advice on financial planning and benefits. Counseling and peer support also featured as areas of great need, particularly for the newly diagnosed.
The report, perhaps one of the most comprehensive studies of its kind, was launched (today) on the International Day of People with a Disability, Monday December 3. MS Australia, the organisation that represents people with MS across the country, says the report reinforces the desperate need for funding of the NDIS to be confirmed in order to meet the daily, basic needs of people living with disabilities like MS.
The research was undertaken by Dr Marita McCabe and colleagues at Deakin University on behalf of Multiple Sclerosis Research Australia (MSRA) and MS Australia.
It is a detailed analysis of the needs of people with MS in the categories of information, employment, transport, psychological services, peer support, equipment, other support services and respite care.
One of the Report’s recommendations included help with navigating the complex web of disability benefits and financial management needed for people with MS. Their disease-related expenses are high and their ability to work is often greatly reduced as a result of their condition. Access and reliability of transport were also highlighted as a significant issue.
“We found that when people are first diagnosed, they overwhelmingly nominated counseling and peer group support as their most important needs,” said Dr McCabe. “Even if they feel well cared for, sometimes they felt a need for a broader variety of peer support,” she said.
“I congratulate the authors of this thorough report,” said Trevor Farrell, Acting CEO of MS Australia. “People with MS & their families have helped identify the areas to address their progressive and changing needs in an environment with a growing number of MS therapies and the expectations of the National Disability Insurance Scheme. This report will provide a roadmap for MS Societies around the country to focus their efforts to ensure that government and health providers understand those needs”.
The survey, designed by Prof McCabe, was implemented through the long-running MSRA research platform, the Australian MS Longitudinal Study (AMSLS ), managed by Dr Rex Simmons at Canberra Hospital. A previous study has validated the demographic spread of the AMSLS participants as an accurate representation of MS in Australia.
‘We are grateful to everyone who took the time to participate in this study and who helped to make it such a comprehensive report that will inform the provision of services and target research into the future,’ said Jeremy Wright, CEO of MSRA.
To view the National MS Needs Analysis 2012 Report please click here