Ms Anna Burke (Chisholm, Deputy-Speaker) Share this | Link to this | Hansard source

I moved this motion to mark World Multiple Sclerosis Day on 26 May 2011. I am extremely familiar with and very supportive of the work of MS Australia, whose offices have been located in close proximity to my electorate and now fall within my electorate boundaries. In particular, I have developed a long association with the staff of MS Australia, particularly Robert Pask and Alan Blackwood, and I thanked them for their dedication to the sufferers of MS when I had the opportunity to present at their annual conference. My support for MS Australia has prompted me to become involved in their work, much of which addresses the employment issues facing people with multiple sclerosis and their families. Multiple sclerosis is rarely fatal and most sufferers live with this episodic illness for years. The global theme for World Multiple Sclerosis Day 2011 is employment. Staying at work is a key concern for people diagnosed with MS as the disease is most frequently diagnosed in people aged between 20 and 40, a time when they are building careers and families. This fits in line very much with the federal budget's theme: work brings dignity.

Australian research shows that people with the disease have less chance of being in paid employment than those with other chronic illnesses. More than 80 per cent of people living with disease lose their jobs within 10 years of diagnosis. This is despite the fact that most people with MS are diagnosed in their 20s and 30s. The experience of people with MS in employment is shared by many people with a chronic illness in Australia. The Australian Institute of Health and Welfare in 2009 reported that people with chronic disease are 60 per cent more likely to not be in the labour force than people without chronic disease. This report also found that of approximately 10.5 million Australians aged between 25 and 64, 33 per cent reported at least one of the following chronic diseases: arthritis, asthma, heart disease, chronic obstructive pulmonary disease, depression, diabetes and osteoporosis. It found the Australian economy loses nearly 540,000 full-time workers associated with the presence of chronic disease each year—10 per cent of the workforce in 2004-05.

Staying at work provides MS sufferers with numerous benefits, as well as, the economy overall. By staying in work MS sufferers have the opportunity, despite their condition, to contribute meaningfully to a workplace. This builds self-confidence as well as vocational skills and experience and it provides a significant avenue for human interaction. Most people are diagnosed in their 20s and 30s, so can you understand the social implications if they are not in the workforce at this time.

Like many chronic diseases, MS is a costly disease. The Victorian Chronic Illness Alliance found in 2006 that some people with MS can spend up to 20 per cent of their income on health costs. Therefore, a further significant benefit of employment is that through work MS sufferers can earn an income that enables them to meet the costs that come with managing a lifelong illness. In the 2005 report on the cost of MS in Australia, Access Economics found that people with MS tend to work more frequently part time, at three times the rate of part-time employment of Australian workers. Many people find this is a way of managing their illness and do best when there is good workforce flexibility. This is a group of Australians with work skills and experience who can remain employed with the right support.

With the ageing of the population, chronic disease will be a growing feature in the workplace and MS sufferers will need to be supported through employment. The recent measures in the federal budget to boost employment of people with disabilities will assist people with MS. New rules allow people on the disability support pension to work up to 30 hours per week for two years without affecting their eligibility for this pension. This is a significant incentive and an important support for people with MS who are determined to stay in the workforce.

A real-life example shows how people with MS have been supported by the federal government through this change. Simone Rutherford of Melbourne has lived with MS for five years and thanks to a supportive employer has been able to continue working part time as the manager of the accounting division of a national clothing company. Simone already works part time but has not been eligible to receive a healthcare card or the disability support pension. If she needs to further reduce her work hours due to her condition, she will meet the new criteria announced in the federal budget and still be able to afford to live with the cost of the disease, maintaining her employment which is what most people want to do. In addition, the provision of high wage subsidies to reward employers who hire people with a disability for at least 15 hours a week will make people with MS more attractive to potential employers. Changes to Jobs Service Australia ensured that MS Australia could operate a special neurological employment service in Victoria, and they currently support over 100 people with MS through this scheme.

We also need employers, unions and the health sector to play their part. Businesses must be willing to not only acknowledge that MS sufferers and their carers represent an important source of skills and experience and that they need to be retained but also incorporate a greater workplace flexibility to enable MS suffers and their carers to fulfil their productive capabilities. The work of local organisations provides more than helpful examples. BrainLink, which is also housed with MS Australia at the Nerve Centre in Blackburn, is an organisation working with MS Australia in Victoria and provides support for carers and families of people with neurological disease, and has been very active in promoting good employment practices. Whilst good support for MS sufferers is essential, research into the cause and eventually a cure is also vital to ensure that we not only support people with MS but also one day find a cure for this insidious disease. I am proud to report that in my electorate there is a great deal of research going on in this area and I commend the MS Australia.

Luke Simpkins (Cowan, Liberal Party) Share this | Link to this | Hansard source

MS is reportedly the most common chronic neurological disease in young adults, with 70 per cent of all diagnoses occurring between the ages of 20 and 50. The disease mistakenly attacks normal tissue, primarily myelin cells. Myelin is an insulating matter which protects nerve fibres in the central nervous system. Scar tissue that subsequently forms along the myelin sheath causes nerve impulse problems, as it can result in the symptoms of the disease, including impairment of motor, sensory and cognitive functions. The most common symptoms include extreme fatigue; blurred or double vision; numbness or pins and needles; weakness in the arms or legs; loss of balance, coordination and mobility; and problems with or changes in memory and speech difficulties.

In our country as many as 22,000 people are affected. Three times as many women as men have MS. They are more often Caucasian and more likely to be living in a temperate zone. MS is less common in warmer areas. Although there is neither a cure nor a specific cause, it is suspected that environmental and genetic factors are behind it. I understand that the incidence of MS in Tasmania is six times higher than in Queensland.

I nevertheless rise to speak on this motion for several reasons. When I was younger I struggled with fatigue, connected with my sport of rowing. My doctor briefly thought I had MS. Having done some reading on the disease, at the time I was a little concerned and was somewhat relieved to be later cleared of the possibility of having it. Unfortunately, since those days, my mother-in-law in Perth and my sister-in-law in Sydney have both been diagnosed with MS. I am therefore acutely aware of the challenges that face those who suffer from MS. The fatigue, the weakness and the balance issues are those that I know of from my wider family experience. But, in addition to those realities, I still remember when my mother-in-law, who has an ACROD disability pass on her car, was harassed by a person who said that she obviously was not disabled and was using the pass illegally, because she did not appear to be disabled. That is an additional challenge that faces many MS sufferers. They do not have the obvious outward signs of being disabled or even debilitated by the disease but, nevertheless, still suffer the debilitating symptoms of the disease. I learnt many years ago that seeing everything in black or white terms was a reckless approach. So I hope that more people can acknowledge the range of disabilities of others rather than immediately reach an incorrect assumption.

On more positive matters, I am pleased that the Australian of the Year 2011 is the well-known director of MS Research Australia, Simon McKeon. He established that organisation in 2004 and it is now the lead research organisation for MS in Australia. I congratulate him and welcome to the fight against MS the profile that his long-term commitment and now his position have added to the fight.

Given the vagaries surrounding the cause of the disease and the factors that contribute, it has nevertheless been determined that there are rehabilitation therapies that can assist sufferers. Physical therapy can assist and include exercises to stretch and strengthen muscles, as well as improve the range of motion, thereby assisting with fatigue reduction and muscle tightness. Occupational therapy in the provision of advice on aids to help in the home and workplace are available. Vocational therapy can offer advice on managing in the workplace. It is also the case that a healthy diet is of assistance, including keeping up the water intake; avoiding coffee and caffeine; eating high-fibre foods and foods with good omega-3, with some doctors recommending as many as three fish meals a week to make it beneficial. But, in overall terms, sufferers need to address having a low-fat diet.

Another interesting response is to address the downside of body overheating. It has been said that body heating adds to reduced nerve functioning and that there is a need for the body to be returned to a normal temperature. Active cooling can help reduce fatigue and improve the balance of a person. Researchers are now looking at cooling suits and whether they can be effective. Obviously, my constituents and other Australians with MS are not likely to have access to cooling suits, but they can use air-conditioners if they have them and not heat the home as much in winter and obviously avoid spa baths and heated pools, although swimming in pools remains very good exercise.

MS sufferers are also at greater risk with their symptoms when they have colds or flu because their immune systems are more active. This therefore highlights the need for preventive health measures like having flu shots, but not the nasal spray version because it has a live virus in it and that will activate the immune system.

From my indirect experience I appreciate some of the issues that face those with MS. Once you have it, life will always have its challenges. But, as I have said, therapies do exist to improve the lives of those who live with MS each day. It is, however, through research that we must continue to look for a cure to stop this disease. And, to those who suffer from it and those who will, I can say that I will always remain committed to the strong allocation of funding for research that will one day see the demise and eventually the elimination of this disease.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I thank the member for Chisholm for bringing this motion about World MS Day to the House. I think it is an important motion. I also acknowledge the contribution made by the member for Cowan and thank him for sharing his personal and family experiences in relation to MS. To begin, I acknowledge the fine work being done by Robert Pask and the way he has communicated and worked really hard within this place to raise members' awareness of MS and the challenges that people with MS face on a daily basis.

There are over 16,000 people in Australia who have MS—75 per cent of those are women, 87 per cent are of working age and the average age at diagnosis is 30 years. It is a disease that tends to affect people between the ages of 20 and 30—that is the time when they are usually diagnosed. Its prevalence in Tasmania is eight to 10 times greater than in North Queensland—I note the member for Lyons has just left the House and that, as he did, he nodded in acknowledgement of that fact.

The symptoms of MS are extreme fatigue, chronic pain, impaired mobility and vision, and high co-morbidity with depression. It leads to relationship and employment problems and to the high costs of chronic illness—as much as 20 per cent of a person's income can be spent on health related needs. MS costs Australia something like $2 billion a year. This includes loss-of-productivity costs of around $160 million a year, the replacement cost of informal care provided to Australians with MS of somewhere in the vicinity of $250 million and direct out-of-pocket healthcare costs for Australians with MS of $160 million per year—that is not each; it is across the board.

The rate of full-time employment for people with MS is lower than for the Australian population and 80 per cent of people with MS lose their jobs within 10 years of diagnosis. Their representation in part-time work is 30 per cent higher. People with MS have higher occupational skills levels than the Australian population, but 48 per cent of people with MS earn less than $300 per week. That compares with 39 per cent of the wider population. The annual productivity cost is, as I mentioned, somewhere in the vicinity of $160 million.

The Gillard government recognises these problems and the Parliamentary Secretary for Disability Services is particularly keen to help—to increase employment in our community for people with MS and to give them the support they need. Jobs in Jeopardy assistance is available through the Disability Employment Services program to help people stay in the workforce. There is also initial support of up to $500 per week for employing a worker with normal hours of work for six months. If ongoing support is then required, an independent assessment is made. Annual funding for such support can be up to $13,200 and is available as long as required.

MS can advance in many ways. When it does, it can result in impairment to mobility and other functions. The government is committed to ensuring that people with MS get the maximum support they need. I would also like to acknowledge Nicole Mundy, one of my constituents, who has come and spoken to me about the issues and needs that she has. She is a young woman, a professional woman, who is managing to maintain her job, but she is constantly faced with challenges. She has shared those challenges with me and emphasised the importance of government support for people suffering from MS. I would like to conclude by once again thanking the member for Chisholm for bringing to the attention of the House that 26 May was World MS Day.

Kelly O'Dwyer (Higgins, Liberal Party) Share this | Link to 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.

Janelle Saffin (Page, Australian Labor Party) Share this | Link to this | Hansard source

I would like to thank the honourable member for Chisholm for affording us the opportunity to talk about MS tonight, particularly as World Multiple Sclerosis Day was on 26 May. I want to talk about two things. Firstly, in my area there is a local group, the Australian Multiple Sclerosis Network of Care, whose members are very active in providing support to each other and in advocacy to the medical profession and to me. The group has been promoting chronic cerebrospinal venous insufficiency, CCSVI. I will talk a bit about that and then about MS Australia and the good work that they do.

Peter Sullivan, the coordinator of the Multiple Sclerosis Network of Care, has prepared a discussion draft entitled CCSVI in Australia—a strategic overviewfrom the perspective of those with MS, dated May 2011. It is really well written and it sets out what the issues are. I cannot pretend to understand all the medical issues, but I can see that a group of people who are suffering from MS are saying, 'We benefit from this particular treatment in this particular area,' and there are some issues of contestability around that, which there often are in terms of making advances in medical treatments.

Peter Sullivan has said that he would like to see formal recognition of CCSVI as a vascular disorder in its own right. He would like to see participation in the introduction of programs to bring the medical profession up to speed. But I have to say that often the medical profession have to bring us up to speed; it is not just one leading the other. Peter Sullivan calls for funding programs to monitor the long-term effectiveness of treatment procedures, including but not restricted to clinical trials recommended by vascular specialists. He would like to see funding and promotion of a national CCSVI screening program. Currently, 25,000 people are involved in screening. In some situations Medicare rebates are available, but it is a confused area. He believes that there should be assistance for those without private insurance to gain access to appropriate treatment and care. I am not sure what the implications of those requests would be, but Peter asked me to put that forward and I said that I would be happy to do so as a representative and advocate. I note that the MS Australia website has a page on CCSVI headed 'Your questions answered' and that there are differences between what MS Australia says and what the MS Network of Care says. But this is certainly an emerging issue that we will have to turn our minds to.

The second matter I wish to raise is that the honourable member for New England wanted to speak in this debate tonight, particularly as this issue relates to health, but he is occupied elsewhere. Our electorates of Page and New England share a border. I know that the honourable member particularly wanted to put on record some comments and research provided by Robert Pask and Alan Blackwood from MS Australia. Figures provided by them show that around 10 per cent of the workforce is lost to chronic disease. Eighty per cent of people lose jobs in the first 10 years after being diagnosed. Eighty-seven per cent of people with MS are of working age. Early intervention may help keep people in the workforce and, presumably, keep some off the DSP. People eligible for DSP can now work up to 30 hours before being penalised. The previous threshold was 15 hours, and that is a welcome change. Fifty-eight per cent of carers of people with MS report having to change their work hours—that is a big loss—and 540,000 full-time workers are lost to our economy each year due to chronic disease.

Josh Frydenberg (Kooyong, Liberal Party) Share this | Link to this | Hansard source

I rise to support the member for Chisholm's motion acknowledging World Multiple Sclerosis Day on 26 May this year and recognising the impact of this progressive neurological disease on so many Australians and their families. Probably like many in this chamber, as a school student I was a keen participant in the MS Readathon—a wonderful national fundraising program now in existence for more than 30 years. This program not only introduced thousands of kids to the joys of reading books; importantly, it raised awareness in our community about the extent of MS. It helped demystify what for many families was a disease that simply affected someone else. Whether it is through activities like the readathon, the Freedom from MS Regatta, the MS Walk and Fun Run or the staunch advocacy of committed individuals like Australian of the Year and founding chair of MS Research Australia, Simon McKeon, the important cause of MS is front of mind.

In Australia, it is estimated that over 20,000 people have MS. Globally, the figure is more than 2½ million. Significantly, 70 per cent of sufferers are female and 98 per cent are Caucasian. While it is not unusual for people with MS to have a relative with the same condition, it is yet to be proven to be strictly hereditary. The onset of symptoms commonly occurs between the ages of 20 and 40, and can take a number of forms. Tremors, fatigue, impaired vision and partial or complete paralysis are typical. But, critically, while we can find references to MS in the medical literature dating back to the early 19th century, we still do not know its primary cause or its cure. What we do know is that for those with MS the body's immune system sends antibodies and white blood cells in an attack on the myelin sheath, which surrounds nerves in the brain and spinal cord. The subsequent damage to the central nervous system comes as nerve signals are prevented from controlling muscle coordination, vision, sensation and strength.

What can we as a society do to improve the lives of those who suffer from MS? The answer is multifaceted. We can drive efforts to improve the employment opportunities and workplace flexibility for those with MS. As is pointed out in this motion, the Australian MS longitudinal study reported that 80 per cent of people with MS lose their employment within 10 years of diagnosis. When one considers that the onset of symptoms can take place at the start or, as is often the case, in the prime of a working person's life, the issue of employment becomes even more acute. Losing one's income is devastating not only in an economic sense but also in a personal sense. A job can provide a sense of purpose and build self-esteem. The road to better health for those who lose their employment becomes that much harder and the burden on their families and carers that much greater. What we need are more job retention strategies and to consider seriously the recommendations of MS Australia around the further development of workplace flexibility, advisory services by employers for employers, the expansion of the workplace modification scheme to include non-capital items and an expansion in the number of specialist disability employment providers. MS Australia have also called on us to do more to provide aids and equipment to those in need. In their words, 'There is chronic underfunding of public aids and equipment.' Other important issues raised include providing high-quality alternative care so that young people with MS do not have to go to a nursing home and support for accessible and affordable housing, including for the cost of house modifications for those with MS.

Just as important as each of these initiatives is the significant public investment in medical research. Research is our only hope in finding what has proved to date to be an evasive cure. MS Research Australia plays a critical role allocating publicly raised funds and coordinating a national partnership with 20-plus Australian research institutes; so too the National Health and Medical Research Council plays its role delivering government funds. It is here that MS Australia are calling for progressive neurological diseases such as MS to be a greater research priority. MS affects thousands of Australians directly and many thousands more indirectly—families, friends and carers. While its cause and cure remain a mystery, its impact on the lives of our fellow citizens does not. As they face the challenges the disease brings, MS sufferers deserve our every support to make their lives better not just today in the workplace and in the home but also tomorrow, as it will hopefully not be long before medical research finds a cure.

Kirsten Livermore (Capricornia, Australian Labor Party) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.