Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Link to this | Hansard source

On behalf of the Standing Committee on Health and Ageing I present the committee's discussion paper on late effects of polio and post-polio syndrome, together with the minutes of proceedings. This is our report on a roundtable we held earlier this year.

Polio is a crippling and potentially fatal infectious disease. Between the 1930s and 1960s many thousands of Australians contracted polio. Some experienced mild flu-like symptoms, perhaps not even realising that they had contracted polio, but others were permanently paralysed. The good news is that the development of effective vaccines in the 1950s and 1960s coupled with a global effort has all but eradicated polio. Australia was officially declared polio free by the World Health Organization in 2000.

The bad news is that polio has left a legacy. Even though people seemed to recover from the initial infection, years late many polio survivors started developing new symptoms. The most common complaints include fatigue, muscle weakness and pain. These are collectively known as late effects of polio or LEOP for short. LEOP can be a very severe condition. Its impact on sufferers and their families is very significant. It is unclear how many Australians are affected by LEOP and how many more are at risk of developing the condition. It is likely that there are thousands of Australians affected or at risk. Even so, the late effects of polio appear to have gone largely unrecognised in Australia.

To learn more about this issue and raise awareness of this issue, the health and ageing committee decided to hold a roundtable discussion. This took place in Melbourne in March this year. I also note the presence of the Deputy Speaker, who was at the roundtable. It was attended by polio advocates, doctors and people involved in research. There were also some patients who came along to share their firsthand experiences of living with the late effects of polio. They told us about all the physical, social, emotional and financial impacts of late effects of polio, of which there are many.

People with LEOP have restricted mobility and they get tired easily, which makes it hard for them to attend social functions and get involved in their communities. It is also expensive to have the late effects of polio. You need to pay for medication, doctor's appointments, special equipment and modifications to your car and home. After hearing all this, we were not surprised to hear that people with the late effects of polio are often socially isolated and financially disadvantaged. It was interesting to hear that it can be hard to even get the right diagnosis to begin with, which is a big factor in treating the illness. There are a lot of reasons for this, but one of them is that there is no particular test for the late effects of polio. So, unless your doctor knows about it, you might not even get diagnosed. In fact, the committee heard that it takes, on average, six years for a patient to receive the correct diagnosis for the late effects of polio. In the meantime, you might be misdiagnosed and given treatment that makes it worse.

Once people have been correctly diagnosed, it is really important that people have access to proper support services. However, Polio Services Victoria is Australia's only publicly funded specialist service. But it is not all bad news. The committee found that several current government policies are likely to help people with the late effects of polio. The GP superclinics and Medicare Locals that the government is rolling out will fill some of the current gaps in services and improve delivery of multidisciplinary care. Having a personally controlled electronic health record will mean that people with LEOP will not need to drag their medical records from doctor to doctor.

The committee made some recommendations which are contained in this report, including information about how important it is. We were surprised to hear that no-one really knows how many people have LEOP, so we have recommended that the Australian Bureau of Statistics or the Australian Institute of Health and Welfare establish mechanisms to collect that information and report on this data. We also have two recommendations about awareness. The first is that information on LEOP should be included in relevant undergraduate health degrees such as medicine. The second is for Medicare Locals to help increase the awareness of LEOP among health professionals already in practice and among the wider community. We now eagerly await the response of the health minister to these recommendations, and I sincerely thank everyone involved in the inquiry. I commend this paper to the House.

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on the discussion paper on the late effects of polio and post-polio syndrome and also to support the comments the chair just made in the chamber. It is also good to see that we have a quorum of the committee sitting here in the chamber, including you, Mr Deputy Speaker. Poliomyelitis, commonly referred to as polio, is a viral infection that was widespread in the Western world until the early 1960s. Polio is a crippling and potentially fatal disease. Between the 1930s and 1960s there were more than 40,000 cases recorded as Australia experienced a number of epidemics. International efforts led to the rollout of vaccine programs, beginning in the late 1950s, and have prevented new infections in Australia whilst resulting in a 99 per cent decrease in the number of polio cases worldwide between 1998 and 2010. Australia was officially declared polio free by the World Health Organization in 2000.

Despite the eradication of polio in Australia, over the last 20 years much attention has been drawn to the development of new, previously unrecognised symptoms which occur in people who were thought to have reached a stable level of recovery after the acute disease. Many polio survivors who have emerging symptoms still report difficulty in obtaining correct diagnosis and treatment. These symptoms include muscle weakness and pain, fatigue, respiratory compromise and an inability to stay alert. These characterise the late effects of polio or post-polio syndrome.

The Standing Committee on Health and Ageing, of which I am the deputy chair, has been looking into the late effects of polio and post-polio syndrome—and this is the paper that came from the roundtable that was held in Melbourne. Although it is unclear how many polio survivors are in Australia, post-polio syndrome is a potentially debilitating condition. The time lag from the initial infection to the second phase varies but is usually around 30 years and the onset is usually slow and steady. Although there is no accurate data on the prevalence of post-polio syndrome in Australia, it is estimated that thousands of individuals are either affected or at risk of developing the condition. Many of those affected are over 50 years of age, which reflects the fact that polio was an uncommon infection in Australia by the early 1960s. However, there are cases amongst those who migrated to Australia from countries who did not eradicate polio as successfully or where it is still an epidemic. This younger group of survivors affected by post-polio syndrome means that the condition needs to be addressed now and for many years to come in Australia.

Despite the seriousness of the symptoms, awareness about post-polio syndrome amongst health professionals and the wider community in Australia is very low. The health and ageing committee decided to hear about post-polio syndrome and its impact on polio survivors, their families and carers. On 30 March 2012, the committee held a roundtable discussion in Melbourne. Participants at the roundtable included representatives of Polio Australia and associated state based polio networks, which between them provide support and advocacy for Australia's polio survivors.

The roundtable also included representation from health professionals involved in the treatment and clinical management of post-polio syndrome as well as representatives of the health and ageing department. The discussions held with these groups formed the basis of the committee's discussion paper. The aim of the roundtable was to provide a better understanding of the challenges facing those affected and to raise the profile of the condition through discussion in a public forum. Roundtable participants demonstrated strong knowledge of the area and there was strong consensus amongst participants on the main issues.

The committee concluded there are some key issues that warrant specific recommendations. The committee was particularly concerned about the lack of information on the prevalence of the late effects of post-polio syndrome and the size of the population at risk. The committee understands that basic research is needed to improve diagnostic capability, which will enable accurate determination of prevalence. However, there is still a need to establish a mechanism to gauge the possible extent of post-polio syndrome in Australia.

The committee recommends the Australian Bureau of Statistics compile data to estimate the number of polio survivors living in Australia and determine within that population the proportion currently experiencing the condition. A key benefit will be to raise awareness of the prevalence of post-polio syndrome to ensure GPs and other health professionals are aware of the condition and are better able to diagnose it and recommend appropriate treatment to patients. The committee also recommends that Medicare Locals actively engage with Polio Australia and state based post-polio associations, with state and territory departments of health and with general practitioners to provide activities which will raise awareness of the late effects of post-polio syndrome.

I commend the report to the House and thank the secretariat for all their work. I also thank the other committee members and all the post-polio syndrome sufferers who have since this discussion paper was released applauded the work of the committee.

Geoff Lyons (Bass, Australian Labor Party) Share this | Link to this | Hansard source

The time allotted for statements on this report has expired. Does the honourable member for Hindmarsh wish to move a motion in connection with the report to enable it to be debated on a later occasion?

Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Link to this | Hansard source

I move:

That the House take note of the report.

Geoff Lyons (Bass, Australian Labor Party) Share this | Link to this | Hansard source

In accordance with standing order 39(d), the debate is adjourned. The resumption of the debate will be made an order of the day for the next sitting.