House debates

Monday, 30 May 2011

Private Members' Business

World Multiple Sclerosis Day

7:05 pm

Photo of Kelly O'DwyerKelly O'Dwyer (Higgins, Liberal Party) Share this | Hansard source

Multiple sclerosis is a disease that has no known cure and no known cause. The symptoms of MS vary from sufferer to sufferer and are often unpredictable. It affects men and women alike regardless of their physical health. It is a frustrating and often highly debilitating disease that requires a great deal of care and management. Multiple sclerosis is the most common chronic disease of the central nervous system among young Australians. While scientists believe that genetic and environmental factors play a role, the cause of MS is not known. It is not a fatal disease, nor is it contagious or inheritable. But for those suffering from it, it can be a very debilitating illness.

Last Thursday we marked World Multiple Sclerosis Day. The purpose of World Multiple Sclerosis Day is to raise awareness but also to promote a culture of understanding. There is no known cure for MS. While therapy and disease-modifying treatments can make a difference, these are often expensive, intrusive and come with adverse side effects. They can reduce the speed at which the disease takes hold, but they cannot stop it. MS predominantly affects people between 20 and 40 years of age. This means that people diagnosed with MS are most often in the most productive stage of their life. Either they are beginning to set their own social and financial goals or they are embarking on a new stage in their career or consolidating the gains they have made throughout their life. They may be starting families, or putting their children through school or university. Diagnosis can mean that their ambitions and life goals are shattered or put on hold.

Those who are diagnosed with MS are uncertain about what it will mean for them in the short term and into the future. The unpredictable nature of the disease makes it even more difficult to live with. Symptoms can be varied, and it is never easy to predict which will occur and which will be more prevalent. Sufferers of MS can experience chronic pain, fatigue, speech difficulties, loss of coordination and loss of mobility. Some people with MS may become seriously disabled, while others may experience one or two attacks and remain symptom free for the rest of their lives. The frequency and severity of attacks cannot be predicted. Changes in condition and the ability and functions of the sufferer will occur over time, and this can be an incredibly frustrating process.

The most frustrating thing about MS is that simple activities that were once taken for granted are now made far more difficult and in some cases impossible. This means that those who are suffering from MS are forced to forgo many of the pleasurable things that normally they would not have thought twice about doing. But the worst thing about MS is the impact it has on gainful employment. The reduced ability to stay in work or find new work results in a reduction in wages, but just as importantly it can have a very negative impact on self-esteem. The figures are stark: we know that 80 per cent of people with multiple sclerosis lose their employment within 10 years of diagnosis. This loss of employment can mean a loss of identity and a loss of purpose. In many cases, a greater understanding of MS would allow them to stay. A flexible workplace would also allow them to stay.

The strain that MS places on the individual sufferer and their family is great. The disease affects family members and care givers as well, and this creates an additional burden. MS places not only a physical burden on the sufferer but a financial and emotional one. For families, the difficulties are compounded by the need to communicate to children the nature of the illness and what it means for the family. Management of the disease becomes more intensive as the disease takes hold and this can create continuing complications for family arrangements, and it is often necessary to renegotiate family roles.

Understanding and awareness play an important part in this process. The more knowledge that workplaces have of the disease, the better they will be able to accommodate MS sufferers. It is important that we continue to ensure that we continue to expand the opportunities that are available to everyone, and to ensure that employers are given the flexibility needed to incorporate those with illness or disability into their workforce. This is important not only for the individuals and their families but for the Australian economy as a whole. This not only creates benefits for those who have MS, but will enhance productivity in the workplace and throughout the economy. In my final moments standing here I would like to specifically refer to a very famous Australian who was diagnosed with MS 10 years ago: the current Australian of the Year, Simon McKeon. He has indeed made an incredible contribution to Australia and his example is a wonderful one for all.

Comments

No comments