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Polio Australia’s briefing paper, which was submitted to the Standing Committee prior to the Roundtable, gave background information on:
- What are the late effects of polio?
- How many polio survivors live in Australia?
- Why are specialist services required for polio survivors?
- Diagnosis of the late effects of polio
- Management of the late effects of polio
- Support available to polio survivors from current initiatives
Developing from this background, Polio Australia drafted eighteen recommendations for consideration by the Committee. The recommendations addressed diagnosis, management and support. The primary recommendation was:
That Polio Australia be resourced to develop, in conjunction with all stakeholders, a National Polio Strategy to establish as a national health priority the diagnosis and management of the late effects of polio and the ongoing support of polio survivors and their families.
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Polio survivors and health professionals participating in the Roundtable brought to the Committee considerable expertise in the diagnosis, management and self-management of, and living with, the late effects of polio. The participants giving evidence on behalf of the polio community and their treating health professionals were:
- Dr Stephen de Graaff (Rehabilitation Specialist)
- Mr Arthur Dobson (Secretary, Post Polio Network – Tasmania Inc)
- Mr Blaise Doran (Physiotherapist and Coordinator, Polio Services Victoria)
- Mr Brett Howard (President, Polio SA Inc)
- Ms Mary-ann Liethof (National Program Manager, Polio Australia Inc)
- Dr Margaret Peel (on behalf of Spinal Injuries Association, Queensland)
- Ms Elizabeth Telford (President, Post Polio Victoria Inc)
- Ms Gillian Thomas (President, Polio Australia Inc)
- Dr John Tierney OAM (National Patron, Polio Australia Inc)
Together with input from Mr Mark Booth (First Assistant Secretary, Primary Care Division, Australian Government Department of Health and Ageing), the following topics were discussed with the Committee during the day’s proceedings:
- Definition, prevalence and diagnosis of LEOP/PPS
- Management of LEOP/PPS
- Supports and services for LEOP/PPS
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Gillian Thomas, President of Polio Australia, gave an opening presentation at the Roundtable which provided the background for the topic areas to be explored.
She concluded her presentation with Polio Australia’s vision for the outcome of the Roundtable:
Roundtable Forum 30 March 2012 takes evidence from a range of polio and post-polio experts.
Evidence, submissions and recommendations considered and Committee report released.
Late Effects of Polio recognised as a substantial and urgent national health concern with diagnosis, management and support readily available across Australia for the nation’s polio survivors, both young and old.
Together with the verbal evidence given by participants at the Roundtable, written material provided to the Committee by Polio Australia included:
- Australian Polio Register Comments (File size: 17.0 KB)
- NSW Case Studies (File size: 65.4 KB)
- Queensland Case Studies (File size: 31.5 KB)
- Tasmanian Case Studies (File size: 43.8 KB)
- Victorian Case Studies (File size: 89.0 KB)
- Younger Polio Survivor Case Study (File size: 34.5 KB)
- Polio: Ten Years On - The Living Legacy (Executive Summary) (File size: 74.8 KB)
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The proceedings at the Roundtable on 30 March 2012 resulted in 42 pages of Hansard evidence.
The witnesses presented cogent arguments on the urgent need for comprehensive, consistent, adequately funded health, disability and peer support services for all Australian polio survivors.
Dr John Tierney (National Patron, Polio Australia) summed up the viewpoint of Polio Australia and the polio community in his evidence at page 32.
I think we have got to perhaps step back from this and have a look at the scale of this particular health issue on a number of levels. We know that there are hundreds of thousands of people in Australia who have the late effects of polio. We know what is going to happen as they progress through life, but most of them do not. They are not aware of the late effects of polio. That is why it is incredibly important that there is a community education program to let these people know the nature of the condition and the possible options they have.
At the next level we have groups in Australia that are organised to assist people with the late effects of polio. But as my colleagues here would tell you, the scale of what we are currently doing and the level of resourcing we currently have mean that if those hundreds of thousands of people suddenly discovered they did have the late effects of polio and came to us to seek assistance, we would be totally overwhelmed. The scaling of our resources to assist this group has got to go up dramatically.
At the third level, if we did have a larger organisation, we have got to refer them to allied health professionals, doctors, to assist them with that. And of course, as has come out during this discussion, a lot of the professionals do not know the nature of this condition and what the appropriate therapies are. So there is a massive education task for professionals as well. My point is scale. Everything is at a tiny level at the moment but if this was all done properly in an ideal world, the whole scale of it should be a lot bigger.
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As already acknowledged, the impact of LEOP/PPS is significant, not only for sufferers but also for their families and carers. The peer support and advocacy provided by Polio Australia and the state-based polio networks assists those affected by LEOP/PPS by providing access to information and advice, and also importantly by providing social and emotional supports.
The Committee was impressed by the commitment and passion of roundtable participants and their supporters, some of whom came to observe the day’s proceedings. It was evident to the Committee that Polio Australia and the state-based polio networks are a cohesive and unified group dedicated to improving the lives of polio survivors, their families and carers.
Following the Roundtable, the Committee released a 66-page Discussion Paper in June 2012. The Committee concluded the Discussion Paper with the following:
To support its aim of raising the profile of LEOP/PPS further, the Committee undertook to produce this discussion paper for presentation in Parliament and to the Minister for Health for consideration. Importantly, this discussion paper not only outlines the key issues raised during discussion, but at various points the Committee has clearly expressed its views in Committee comment. However, and while acknowledging the limits of inquiry conducted by a single roundtable, on further consideration the Committee concluded that some key issues warrant specific recommendation. In particular, the Committee considered recommendations should address the need to determine the potential size of the population at risk of developing LEOP/PPS and options for raising awareness.
The Committee recommends that the Australian Bureau of Statistics and/or the Australian Institute of Health and Welfare establish mechanisms through inclusion of appropriate questions in existing health and/or disability surveys to estimate and report on the size of the population of polio survivors living in Australia, and the proportion of that population experiencing the late effects of polio/post-polio syndrome.
The Committee recommends that the relevant National Boards, in consultation with key stakeholders including peak professional bodies, medical/health educators and training providers, seek to ensure curricula for students includes information on the late effects of polio/post-polio syndrome, to raise awareness of the condition as a possible diagnostic outcome and of best practice for treatment and management.
The Committee recommends that Medicare Locals actively engage with Polio Australia and the state-based post-polio associations, with state and territory government departments of health, and with general practitioners to promote activities which will raise awareness of the late effects of polio/post-polio syndrome: among practicing health professionals through continuing professional development; and in the community through patient education, noting the need to tailor communication to enhance engagement with specific population groups taking into account demographic factors such as age and cultural background.
On 20 August 2012, Steve Georganas MP and Steve Lyons MP (Chair and Deputy Chair, respectively, of the House of Representatives Standing Committee on Health and Ageing) tabled the Committee’s Discussion Paper in the House.
Excerpts from their speeches in the House appear below, and the complete text can also be downloaded.
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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.
The committee made some recommendations which are contained in this report, including information about how important it is. … 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 Georganas, MP
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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. … 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 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.
Steve Irons, MP
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On 24 November 2014, almost thirty months after the House of Representatives Standing Committee on Health and Ageing‘s Report Discussion paper on the late effects of polio/post-polio syndrome was released in June 2012, the Australian Government responded to the Report’s three recommendations.
There are no surprises in the brief responses made on:
- the collection of Australian data about the number of polio survivors and the number experiencing the late effects of polio and/or post-polio syndrome (Recommendation 1);
- the education of health professionals (Recommendation 2); or
- the role that Medicare Locals, or its successor, might play (Recommendation).
While the Government agrees with Recommendation 1 and claims that relevant data is already being captured, they fail to appreciate the extent of the impact (as clearly evidenced in the Discussion Paper) of polio’s late effects on the Australian community.
In their response to Recommendation 2, they correctly point out that education is controlled by the states and the national professional bodies not the federal government.
Finally, with regard to Recommendation 3, since the Discussion Paper was released in 2012, Australia has moved on with Medicare Locals being transformed into Primary Health Networks. With the system being in a state of transition, the Government is not in a position to respond to a work in progress.
Overall, the Government is not opposed to anything that was proposed in the Health and Ageing Committee Report, but it has no plans to put any resources into progressing its recommendations.