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

The question is that the motion be agreed to.

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

The World Health Organisation has identified that epilepsy is arguably the most misunderstood, most stigmatised and most underresourced health condition in the world today. There are an estimated 60-plus million people with epilepsy in the world, including at any one time around 200,000 Australian citizens. While Australia has a great deal to be proud about in its medical treatment of people with epilepsy, there are many for whom current medical treatments are woefully inadequate. As many as 10 per cent of Australians with epilepsy have poor control of their seizures, and for a smaller percentage there is so little control that life is almost unbearable for them and for those who love and care for them. I have experienced this at a personal level. My sister-in-law has suffered from uncontrollable epilepsy since she was 10 years of age, and I know the impact that it has had on her and her family’s lives.

In countries such as the Netherlands and England, for people with uncontrollable or refractory seizures, programs exist that enable them to spend the time needed to be safely taken off all their medications and then reassessed and remedicated in light of the new diagnostic assessments. In conjunction with medical makeover and some social and employment support, help with developing independent living skills and whatever else is needed to get the person back on their feet with a chance of a better life. It is a more comprehensive approach than is offered anywhere in Australia. Once again, I can speak from experience, having worked with people with disabilities and epilepsy prior to coming into parliament.

Even where seizures are fairly well controlled, the truth is there is often an accompanying sense of shame and fear attached to this condition. There are many burdens borne by people who live with epilepsy which make it particularly difficult to diagnose and to deal with. Epilepsy is a very complex condition and manifests itself in many ways. People living with uncontrolled or refractory epilepsy suffer enormous and unnecessary pain and hardship.

It is time for us in Australia to accept the challenge and take steps to make the lasting changes to the lives of people with epilepsy and their carers, whose lives are impacted on in various ways. The recent mental health initiatives are a good example of what governments can achieve. Despite significant medical research and treatment initiatives, there has been a failure to address many of the issues facing people living with epilepsy.

The Joint Epilepsy Council of Australia, which is the Australian chapter of the International Bureau for Epilepsy, is a key player in the World Health Organisation’s global campaign. The JECA has asked that a national epilepsy working group be established and resourced to oversee a national public education program, in tandem with an applied social research program to ensure that the right messages are being targeted to the right people, and to develop strategies to address many of the issues faced by people with epilepsy based upon credible, rigorous applied social research.

Areas requiring urgent attention include looking at the impact of epilepsy in Aboriginal and Torres Strait Islander communities; developing a better informed and more workable national response to the transport and driving difficulties faced by people living with epilepsy; ensuring appropriate, timely diagnosis and assessment is possible for all Australians who experience seizures, not just those living in selected capital cities; and making it possible for people whose seizures are totally uncontrollable to access longer term, up to nine months, reassessment and treatment centres. The critical role of trained epilepsy counsellors working throughout Australia with state and territory epilepsy associations needs to be recognised and given consistent support by the states, led by the Commonwealth. We need to listen to expert groups such as the Epilepsy Society of Australia and the American Academy for Neuroscience and put an immediate end to prescribing and dispensing practices that are high risk to people with epilepsy.

The Joint Epilepsy Council has asked the parliament to form a parliamentary friends of epilepsy group. I am pleased to advise that this will take place. In conjunction with Senator Humphries, I will convene this group. We hope to launch it on 27 May this year. I hope that those people who are speaking in the debate will become members of this group because I believe it is a way by which we can make real changes. We will work to ensure that people living with epilepsy are able to be included in the mainstream life of Australia and, as the World Health Organisation global campaign puts it, ‘come out of the shadows’.

Peter Slipper (Fisher, Liberal Party) Share this | Link to this | Hansard source

One of the more memorable experiences I had as a young child in primary school was when another child suffered an epileptic fit. As I had not heard of epilepsy, I was quite shocked by this particular fit and how this girl reacted. Therefore, I am ashamed to say, I and other students moved some distance from this person because we simply did not understand what epilepsy was. We did not understand then that so many Australians suffered from epilepsy. Today 200,000 Australians suffer from epilepsy on a regular basis.

It is very clear that this is a disease that really needs more research. Obviously, it is a disease about which most people in the community have insufficient knowledge. While I and others in primary school saw what occurred to this particular child, I suspect that in 2008, were a similar event to occur in a school anywhere in Australia, students would react in much the same way as we did at that time. That means that, during the ensuing years, we as a country simply have not done enough to improve our community store of knowledge of this insidious disease. We simply have not spent the money we need to spend to ensure that research is undertaken to try to do whatever we can to both find a cure for this disease and make sure that those living with this disease are able to do so in the best possible manner.

Thirty per cent of epilepsy cases have an identifiable cause ranging from head trauma, viral infection and substance abuse to brain tumours or stroke. But 70 per cent of epilepsy cases have no known cause. I imagine that when an epileptic situation occurs in a family, particularly a family which has not had any prior history of epilepsy, there must be a great lack of understanding and, I suppose, a failure of a willingness to accept the particular diagnosis. While the types of seizures experienced by sufferers vary quite dramatically, from simple moments of inattention lasting only seconds to complete loss of muscular control for several minutes, it is not difficult to understand that, regardless of the degree of severity of an epileptic seizure, one ought to sympathise with those who suffer from this disease given the obvious concern they must harbour as they go through their daily lives.

As we all know, significant injuries can arise as a result of a seizure. They range from head injuries as a result of falls, through to those injuries from other accidents that occur as a result of a sudden epileptic seizure. For those diagnosed with epilepsy and their families, such a concern is never far away. The unease such people carry as a result of not knowing when or where an episode could occur is clearly a matter that must be a constant worry. It is also a real concern for sufferers that their seizure might impact on others, and it is true to say that those who have been unable to satisfactorily manage their condition have been forced to give up pursuits such as swimming or driving a car, which of course puts further demands on their loved ones.

I suspect that those people who suffer from epilepsy, were a seizure to occur in the workplace, would be concerned about the impact on their job prospects. Even though the person concerned could well have the same capacity as anyone else to carry out a particular role, if there were a collapse at work, particularly a dramatic collapse, that would work to their disadvantage. It would seem that in such cases many sufferers would sustain a loss of job opportunity and prospects. They would certainly suffer a loss of promotion and in some cases a loss of job. It is, I understand, possible for anyone under certain circumstances to succumb to an epileptic seizure and it is only when someone suffers a series of those seizures that epilepsy is ultimately diagnosed.

I could talk at length about epilepsy and go into many more details but regrettably time is short. I believe, while we have made enormous medical advances in so many areas and while, as a country, we have much to be proud of with our health system, that does not mean we ought to be complacent. There is a group of people who suffer from epilepsy in their families and who do warrant, in my view, additional research to make sure that we are able to get more positive outcomes to let those living with epilepsy have a very much higher quality of life.

Shayne Neumann (Blair, Australian Labor Party) Share this | Link to this | Hansard source

Epilepsy affects approximately 50 million people across the globe. It accounts for one per cent of the burden of disease worldwide. Nearly 80 per cent of the burden of epilepsy is in the developing world. More than 80 per cent of the people in some developing countries receive no treatment at all.

Epilepsy is a very common but serious disorder of the brain. It is up there with depression, Alzheimer’s, dementia and other brain disorders in commonality. According to the World Health Organisation’s Global Campaign against Epilepsy report in 2005, it ranks with breast cancer in women and lung cancer in men in terms of commonality. This report makes it very clear that those people suffering from epilepsy are ‘forced into the shadows’. They suffer far more than seizures; they suffer from ‘fear, misunderstanding and the resulting social stigma and discrimination’.

The seizures are unpredictable but still many people do not understand that the disorder is noncommunicable. In ancient times those suffering from this disorder were considered to be suffering from demonic influence or possession and treated as outcasts—lepers, indeed. Many myths and superstitions abounded. One wonders whether reports in the Bible were really of epileptic fits rather than the casting out of demons et cetera.

Fortunately, we have moved on since then, but not far enough. In 1997 the Global Campaign against Epilepsy was launched by the World Health Organisation, in consultation with other bodies, ‘to improve acceptability, treatment, services and prevention of epilepsy worldwide’. In Australia, we need to acknowledge that one in 120 people suffer from epilepsy and that up to five per cent of people in our society may have a seizure at some time in their lives. Unfortunately, it is usually only when seizures are recurrent that diagnosis occurs. Often epileptic seizures are put down to febrile convulsions or some other cause. Many people outgrow epilepsy or go into long-term remission, suffering no further seizures. In other words, epilepsy is not always a lifetime condition. That is a fact not always understood.

In my family we have had our own experience. In Maryborough on 26 December 1990, my eldest daughter, Alex, had seizures. After fitting for some time she lay motionless in my arms, lifeless, as I took her to the Maryborough Base Hospital. She was hospitalised for many days. My wife was pregnant with our second daughter. I did the night shifts and Carolyn, my wife, did the day shifts. Subsequently, Alex had further seizures in Ipswich, our home town, and was hospitalised yet again. I worked out then that medical diagnosis was problematic, confused and often difficult.

Alex was put on Epilim and she was on it for a long time. Her prognosis was uncertain, and we lived with the memory and with fear and anxiety about what might happen in the future. Fortunately for Carolyn and me, Alex has become seizure free and she no longer requires medication. She is now a very happy, healthy and opinionated young woman of nearly 19 years of age. But the experience for me is seared into my brain and, as a parent, I will not forget it as long as I live. It is one of those memories I will take to my grave. I can barely imagine what life must be like for those parents and children who suffer and for sufferers generally. I only suffered it vicariously.

We must help. We must do more. We must lift the veil of ignorance. We must fund more research. We must engage in education programs to improve community awareness. We must encourage philanthropic donations and support families and individuals better with confidence-building assistance and practical help. High-profile sufferers such as Wally Lewis, the Australian test rugby league great, have brought home the message that epilepsy can strike anyone.

It is not just specialist surgical cases which must be the focus. We need programs in Australia to enable us to spend time getting people off medication and then reassessing them and remedicating them when necessary after a new diagnosis has been undertaken. They have these programs in western Europe but not here. I urge the federal government to heed the voice of the Joint Epilepsy Council of Australia in this regard. Community health centres are an ideal way to assist people. I think that the government’s super GP clinics can play a role in promotion, education and medical service delivery and I call on the government to place a greater emphasis on dealing with this very important issue accordingly.

Nola Marino (Forrest, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on the motion moved by the member for Shortland. Approximately one in 120 people have epilepsy and approximately 17,000 people in Western Australia suffer from epilepsy. Anyone can be affected by seizures at any age but epilepsy is most frequently diagnosed in infancy, childhood, adolescence and old age. Epilepsy is more than three times as common as multiple sclerosis, Parkinson’s disease and cerebral palsy. Epilepsy is a condition of the brain and is not a mental illness.

It is commonly thought that epilepsy always involves convulsions or grand mal seizures. In fact, there are around 40 different types of seizures. Many people outgrow or have a long-term remission from seizures. Epilepsy is not necessarily a lifelong disorder, but it can have profound social, physical and psychological consequences. People who have epilepsy continually face social stigma and exclusion. A fundamental part of reducing the stigma is raising public and professional awareness. There is the Epilepsy Association of Western Australia, which has been in operation since 1963 and is run by a committee of volunteers. It aims to raise the profile of epilepsy in the community, act as an advocate for persons with epilepsy and their families, provide education to those living with epilepsy, provide education to the community, provide support services to those touched by epilepsy and improve the quality of life of persons with epilepsy to enable them to integrate successfully in the community and enjoy a full and productive lifestyle.

The Epilepsy Association of Western Australia is able to provide support services to people living with epilepsy due to the generous continued support of many donors. Whether it is through donations, regular giving, support by the WA Lotteries Commission, people leaving a bequest in their will, workplace giving or marathon running, the public support assists the Epilepsy Association to continue to provide these much-needed services. Of course, the Epilepsy Association has had to be continually creative and innovative in thinking up ways to make it easy for the public to donate, and it has partnered with projects such as Everyday Hero and ‘action partner’ to make donating more convenient for loyal supporters to ensure continued health for people living with epilepsy and their families.

Even though there have been significant dollars contributed to this in the past, there is always a need for more. In fact, the Australian government, through the National Health and Medical Research Council, provided $8.3 million in funding. Professor Peter Gage and his team from Canberra’s Australian National University received $400,000 to undertake research that aimed to better understand the function of anti-epileptic drugs, anaesthetics and tranquillisers, which act by modulating specific protein receptors in the brain. Building on his earlier research, Professor Gage’s project studied mutations in receptors found to be associated with some forms of epilepsy. Professor Gage and his team believe that, if the properties and actions of anaesthetics, tranquillisers and anti-epileptic drugs are better understood, it is possible that new, more selective drugs could be discovered.

There is a strong need for these types of drugs, with the potential annual market estimated to be worth over $2.7 billion. This seriously equates to a genuine need in the community for all forms of resources to be devoted to this particular condition. Anybody who has lived with, worked with or been affected by those who have epilepsy could only support a greater level of funding for all forms of research and for that which assists people to integrate with their local communities and families.

Craig Thomson (Dobell, Australian Labor Party) Share this | Link to this | Hansard source

I rise tonight to speak in support of the motion brought to the House by the member for Shortland. The electorate of Shortland borders my electorate of Dobell, and I thank the member for Shortland for once again bringing a motion to the House that advocates fairness and justice. As the motion states, epilepsy is the most common serious brain disorder. Everyone in this room and everyone in this parliament will know someone who has suffered from epilepsy. Prior to the late 19th century, epilepsy was generally seen as a form of insanity or possession. It has always been a condition that has caused alarm to many people and it can still disturb people who witness convulsions. There are around 200,000 people diagnosed with epilepsy at any one time in Australia, with possibly another half a million family members involved in their care. There are somewhere between 360,000 and 540,000 Australians who will be diagnosed with epilepsy during their lifetimes, and over two million Australians will have a single non-epileptic seizure at some stage in their life.

There are many burdens placed on the men and women of Australia who live with epilepsy. The Joint Epilepsy Council lists some of the problems as: a lack of acceptance by people in many sporting clubs and other significant social activities; reduced opportunities for education; difficulties gaining employment and sometimes in keeping it; a host of safety concerns, both in the home and in the community; having to learn how to deal with rejection by peer groups, exclusion, marginalisation and loneliness; living with the fear of never really knowing when the next seizure event will take place or how bad it will be; being unable to drive for mandatory periods of time unless you have fully controlled seizures; knowing that most people are afraid of seizures when they see them happening and are ill-prepared to deal with them.

The new government, the Rudd government, has a vision for a more inclusive Australia. As ANZ’s Saul Eslake and the Business Council of Australia’s Michael Chaney have recently told us, reducing disadvantage is now both a moral and economic imperative for Australia. As people who suffer from epilepsy have reduced opportunities for education, difficulties in gaining employment and increased difficulty in retaining employment, it is essential that our government look to fund greater research into epilepsy.

In my electorate of Dobell there are tens of thousands of men and women who drive to Sydney every day for employment. Epilepsy can stop someone from being able to drive, and thus some epilepsy sufferers on the Central Coast would be given an added burden of not being able to gain meaningful employment in Sydney, where many of the people who live in the electorate find employment.

This is an opportunity for the government to bring in policies of compassion that will make our community and our economy stronger. The Joint Epilepsy Council of Australia, which is the Australian chapter of the International Bureau for Epilepsy, a key player in the World Health Organisation’s global campaign, has asked parliament to work with it to develop a national strategy for epilepsy. A national epilepsy working party should be established—and the member for Shortland has already spoken on that. It would include representation from the Joint Epilepsy Council of Australia, which could act as a key advisory body. The Joint Epilepsy Council further asks that the working party be given the resources to oversee a national public education program in tandem with an applied social research program to ensure the right messages are being targeted to the right people.

Research reports that were sent to members of the last parliament by the Joint Epilepsy Council of Australia demonstrated how important it is to look beneath the surface when investigating issues like stigma, isolation, depression and any of the other burdens associated with epilepsy. Why does one football club allow a player with epilepsy to participate in the team when in another town a player with epilepsy may be left out of the team—and to all intents and purposes left out of the life of his peer group? Why do people who have seizures take the risks they do? Why do they keep standing up, going out in public, driving to the supermarket, taking part in sport, attempting to study and all the rest of it, when a seizure could put an end to what they are doing with unexpected and unpredicted ferocity? What are the relative risks for people living with epilepsy compared to those for people with other health conditions?

Social inclusion is at the very heart of this government. The motion moved by the member for Shortland is congruent with the values and spirit of social inclusion. I commend this motion to the House.

Mark Coulton (Parkes, National Party, Shadow Parliamentary Secretary for Ageing and the Voluntary Sector) Share this | Link to this | Hansard source

I rise tonight to speak in support of this motion as I believe that greater research into epilepsy should be a priority for the federal government. I would like to commend the member for Shortland for bringing this motion into the House. As the motion states, at any given time there are 200,000 people living with epilepsy in Australia and up to three times that many will suffer from epilepsy at some stage in their lives. It is estimated that around 50 million people, or one in 120, have epilepsy at any given time around the world. It is the most common serious brain disorder and one that needs further research. Epilepsy is an illness which greatly affects the lives of those dealing with the disease and their friends and families.

Epilepsy sufferers usually rely on regular medication to help control their illness. Other treatments include controlled diets, alternative therapies and, in some cases, surgery. These treatments are not only costly but can have a big impact on the lifestyles of epilepsy sufferers. Other lifestyle issues associated with epilepsy can include the loss of a driver’s licence, the effect that the disease can have on relationships and the effect that it can have on finding and maintaining a job. Dealing with epilepsy can also be that much harder for those living in rural areas such as my electorate. In country areas, it becomes much harder to access medical services. The lack of public transport makes it a lot more difficult for those epilepsy sufferers who can no longer drive. Also, a lack of support groups in rural areas can make it very much harder to cope. As an MP representing a large rural electorate, I support this motion, as it addresses some of the major issues faced by epilepsy sufferers within my electorate of Parkes.

Epilepsy can be a very frightening disease and there are over 40 types of seizures. Some seizures can often hit without any warning. My first personal experience with epilepsy came as a schoolboy footballer. One of the players in my team had a seizure in the middle of a game. He was the biggest, strongest, toughest and meanest player we had, and the seizure rendered him completely defenceless. At that stage I realised how absolutely debilitating this disease could be. It also frightened me and, I suspect, my team mates as well, because we did not know what to do. We did not know how to help him. There was talk—‘Be careful that he doesn’t swallow his tongue,’ and other such things that I now believe may or may not happen. But it was a great shock and a wake-up call to us about how prevalent this disease was in society.

From my personal experience, I fully support the motion that the Australian government establish a nationwide educational strategy. People need to understand what epilepsy is and how to deal with the situation if someone you know has a seizure. An educational campaign would also go a long way in addressing some of the social stigma attached to the disease. In conclusion, I would like to put on record my support for this motion and I urge the Labor government to seriously consider the items that are being proposed.

Sid Sidebottom (Braddon, Australian Labor Party) Share this | Link to this | Hansard source

I thank the member and all the members who contributed to the debate, and I thank the member for Shortland for moving the motion. 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.