29 October 2012
Polio Survivors Take Fight to Canberra – Wednesday 31st October 2012
29 July 2012
Polio Survivors Break through Medical Barriers
6 July 2012
Discussion Paper on polio’s legacy released
AFTER SPENDING decades in the political wilderness, Australia’s polio survivors are finally being recognised in a paper which has just been released by the House of Representatives Standing Committee on Health and Ageing following a public Roundtable Forum on the Late Effects of Polio (LEOP) and Post-Polio Syndrome (PPS) in March 2012.
The “Discussion paper on the late effects of polio/post-polio syndrome” was tabled out of session. An allocation of time will be sought to speak to the paper when the House resumes sitting in August, most likely scheduled for 20 August 2012.
As Australia’s population ages, a growing number of polio survivors, once fully active members of society, are now experiencing new and debilitating symptoms due to Late Effects of Polio (LEOP) and Post Polio Syndrome (PPS). For example, some who walked independently must now use braces, crutches or wheelchairs and make changes to their work and home lives. Adding further weight to the needs of this still largely invisible community are the unrecorded numbers of new survivors who have migrated from developing countries where polio is either still endemic, or has only just recently been eradicated.
At the March Roundtable Forum, Polio Australia, a not-for-profit support organisation for polio survivors throughout the country, called for major investments into training the medical and allied health professions so they can effectively identify and treat LEOP and PPS.
Polio Australia President, Gillian Thomas, herself a survivor, said: “We are very impressed with the depth of understanding that comes through the Discussion Paper and believe the three specific Recommendations made by the Committee are fully in accordance with Polio Australia’s goal to alleviate the barriers faced by Australia’s post polio community.”
The recommendations outlined in the Discussion paper are:
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.
Ms Thomas said, “Whilst we are delighted that this Discussion paper highlights the issues faced by our post polio community, it is self evident that Polio Australia requires dedicated funding if we are to advance the strategies outlined in the Discussion Paper and to redress the problems faced by the tens of thousands of polio survivors living in Australia today.”
Ms Thomas continued, “In the meantime, Polio Australia and the State Polio Networks will continue to do what we can within our limited human and financial resources for the health and wellbeing of Australia’s significant post polio community.”
The “Discussion paper on the late effects of polio/post-polio syndrome” can be viewed and downloaded from the House of Representatives Committee website.
Further information on Polio Australia’s views can be viewed online here.
29 March 2012
Polio back on the political agenda
A NATIONAL Polio Strategy to address the escalating health concerns of Australia’s many tens of thousands of polio survivors will be the key recommendation put to a specially-assembled Federal Government Standing Committee meeting in Melbourne tomorrow.
In what will equate to the most concerted, high-level government focus into the effects of the disease since Australia was declared “polio free” in 2000, the House of Representatives Standing Committee on Health and Ageing will tomorrow conduct a public Roundtable Forum on the Late Effects of Polio (LEOP) and Post-Polio Syndrome (PPS) at Parliament House, East Melbourne.
As Australia’s population ages, a growing number of polio survivors, once fully active members of society, are now experiencing new and debilitating symptoms due to LEOP and PPS. For example, some who walked independently must now use braces, crutches or wheelchairs and make changes to their work and home lives. Adding further weight to the needs of this still largely invisible community are the unrecorded numbers of new survivors who have migrated from developing countries where polio is either still endemic, or has only just recently been eradicated.
Although polio is often merely thought of as a distant reminder of Australia’s pre-vaccination era, in recent years the lack of investment into addressing LEOP and PPS has led to the development of significant health and social burdens for survivors and their families, as well spiralling costs to Australia’s health system.
Polio Australia, a not-for-profit support organisation for polio survivors throughout the country, will submit a list of recommendations to the Committee, central of which is the prioritisation of LEOP and PPS diagnosis and management on the national health agenda.
Polio Australia’s recommendations call for major investments into training the medical and allied health professions so they can effectively identify and treat LEOP and PPS.
Polio Australia President, Gillian Thomas, herself a survivor, said: “Polio survivors are to a large extent invisible in the community and the late effects are rarely recognised by health professionals as a ‘condition’ which is capable of immense impact.
“Without the knowledge of what to look for when presented with disparate LEOP symptoms, GPs are unable to make an accurate diagnosis. Instead, the focus is on the most prevalent manifestation – usually muscle weakness and/or joint pain – and the diagnosis of ‘arthritis’ and/or the ‘general effects of ageing’ results. The patient is then referred to an equally unaware physiotherapist to ‘build up muscle strength’ using inappropriate, rigorous exercise routines, which exacerbate damage to the already fragile motor neurons of a person experiencing LEOP.
“This continued lack of awareness causes avoidable acute care incidents and a spiralling cost to Australia’s health system.
“Survivors are increasingly forced to rely on family support, often ageing partners, to undertake daily living activities, risking additional medical issues for the very people they depend on.”
Ms Thomas continued: “Tomorrow will mark a significant day in the history of the disease in this country.
“Despite polio survivors forming the largest single group of people with physical disabilities in Australia, this reality has not yet been recognised by policy makers. Now, after years of lobbying in Canberra, we are hopeful that this Roundtable Forum is the beginning of a very important turning point in having the many and complex health needs of Australia’s polio survivors brought out of the shadows and onto the national health agenda”.
The Roundtable Forum on Late Effects of Polio/Post-Polio Syndrome is open to the public.
Time: 10:00 am – 4:00 pm
Venue: Committee Room G.9; Parliament House of Victoria, 55 St Andrews Place, Melbourne, Victoria.
For information, interviews and photo opportunities, contact Mary-ann Liethof, National Program Manager, Polio Australia, Ph: 03 9016 7678 / or [email href=”[email protected]”]email Mary-ann[/email].
Australia’s Polio Community – forgotten and invisible
Australia has a forgotten community which is as vast as it is invisible – our polio survivors. October is National Polio Awareness Month and Polio Australia encourages people to “Wear Orange” between the 9th and 15th of the month to show support.“We’re Still Here!” is the catchcry of tens of thousands of Australians who contracted polio during epidemics between the 1920s and 1960s. There have also been a number of polio survivors who migrated to Australia from countries where polio was more recently eradicated, or is still active.
Unfortunately, establishing the exact number of Australia’s polio survivors is incredibly difficult. Although polio became a notifiable disease in 1922, contemporaneous evidence during the epidemics last century and more recent State Network records reveal that many cases of polio were not reported. Reasons include people being cared for at home, living in isolated areas, or the stigma attached to having contracted polio. In addition, many hospital records have since been destroyed due to practices at the time or as the result of hospital fires, moves, or closures.We also know there were a large number of ‘sub-clinical’ cases – including siblings of polio survivors who had polio – who only experienced ‘flu-like symptoms’ and were never actually diagnosed with polio. Added to that are the number of people who were misdiagnosed with, for example, encephalitis or influenza.Arguably, polio survivors form the largest single group of people with physical disabilities in Australia, yet this is unrecognised by policy makers, the community at large, and indeed the polio survivors themselves.
Polio survivors are to a large extent invisible in the community. However, many are now experiencing new symptoms known as the Late Effects of Polio which are having a significant and negative impact on people’s mobility and independence.The Late Effects of Polio can include:
- pain in muscles and/or joints;
- unaccustomed fatigue unrelated to activity;
- decreased strength and endurance;
- weakness and muscle atrophy;
- muscle spasms/twitching;
- respiratory and sleep problems; and
- swallowing or speaking difficulties.
Knowledge about the Late Effects of Polio and their impact upon the lives of polio survivors and their families is almost non existent amongst the medical profession and organisations such as Centrelink, for example.
According to Polio Australia’s President, Gillian Thomas, “Many polio survivors who have emerging symptoms tell me about the difficulty they have in obtaining correct diagnosis and treatment.”
She goes on to say, “As time passes, an increasing number of previously ‘stable’ persons with a history of polio infection experience new symptoms. The large number of survivors who are now reporting these symptoms has transformed the problem from an individual predicament to a social concern. Although there are thousands of us around, we are virtually ‘invisible’ in the community because we have been conditioned from an early age to blend in and ‘just get on with it,” Gillian says.
Polio Australia was established in 2008 to represent the needs of polio survivors through centralised information provision and in the development and delivery of comprehensive education programs to the polio community and their health professionals. It receives no government funding, relying totally on philanthropy and donations.
In order to capture important statistical data on Australia’s polio community, Polio Australia set up an Australian Polio Register and encourages everyone who contracted polio, either in Australia or overseas, to add their details. People can choose to have their information displayed on Polio Australia’s website, or it can be kept confidential and just added to aggregate data.
“Our strength lies in our numbers,” said Gillian, “so please help us to get you the services you need by signing up.”
The Australian Polio Register can be completed online here or a hard copy can be downloaded and posted to Polio Australia, PO Box 500, Kew East, 3102.
For information about interviews and photo opportunities: Mary-ann Liethof, National Program Manager, Polio Australia on Ph: 03 9016 7678 or Email: [email protected]
Click here for the 2010 Polio Awareness Month photo gallery and here for last year’s activities.
Check here for Polio Awareness Month activities being held around Australia.
Monday 18 October 2010
World Polio Day 2010: we can never be complacent about childhood vaccination
Polio Australia is marking World Polio Day, Sunday 24 October 2010, with a call to all Australians to make childhood vaccination a priority – and not to forget those for whom vaccination came too late.
According to Polio Australia President, Ms Gillian Thomas, “Vaccines came too late for us. We missed out. As polio survivors, we’ve made much of our lives but just think what we could have done if only we had received the vaccine …” she said.
Polio Australia would like to mark World Polio Day as significant for those people who were not able to avoid polio. Why not “Wear Orange on World Polio Day” and take a photo and upload the image to www.polioaustralia.org.au.
Despite the WHO declaration in 2000 that Australia was ‘polio free’ , Australia experienced a new case of acute polio infection imported from overseas in 2007.
“Australians can never be complacent about childhood vaccination,” Ms Thomas said. “Until polio is eradicated from the rest of the world, there is an ongoing risk of the disease being imported into Australia from other countries,” Ms Thomas said.
Since 1912, more than 30,000 cases of paralytic poliomyelitis have been reported in Australia (largely through the epidemics of the ‘30s, ‘40s, ‘50s and ‘60s). However, according to the WHO, this figure represents less than 1% of the total number of people who contract the disease.
Polio specialist, and Director of Pain Services at the Epworth Hospital in Melbourne, Dr Steve de Graaff, describes how those who survived the ravages of the disease as children, and who probably went on to live very active lives, are now being diagnosed with what are known as ‘the late effects of polio’ (LEOP).
“For these dynamic individuals, who’ve taken all before them in life, this can be very distressing,” he said. “The symptoms commonly include new muscle weakness, muscle and joint pain, debilitating fatigue levels, swallowing and breathing problems, sleep disturbance, and an inability to regulate body temperature.”
According to Dr de Graaff, the management of the LEOP is largely non-medical. “It’s about recognising that things have changed and slowing down the pace of activity so as to be more efficient in your movements in light of the new limitations,” he said.
“Without a doubt, anyone who finds that they are failing physically without explanation should always consult their doctor to ensure that there’s nothing sinister going on and for advice as to how to manage what’s happening,” he said.
As Gillian Thomas explains, “There are no silver bullets with the LEOP but information and support can play a vital role. There are so many people out there that we still haven’t reached.”
“At the same time, we’re working with health care professionals to establish nationally consistent guidelines for the treatment of the LEOP and with governments to lobby for more polio-specific services,” she said.
Friday 1 October 2010
WE’RE STILL HERE!
What do you know about poliomyelitis? If you think it’s ‘gone’, then think again!
What do you know about life after polio? If you think everyone who had polio during Australia’s epidemics is ‘gone’, the fact is We’re Still Here!
Polio (poliomyelitis or infantile paralysis) is now a disease that has been virtually forgotten by the Australian community and health professionals. Although ongoing vaccination programs introduced in the late 1950s have been successful in eradicating polio in Australia, infections were still being reported well into the 1960s. As recently as 2007, Australia experienced a case of this debilitating disease when a 22 year old Melbourne-based student returned from a holiday in Pakistan. Polio is really just a plane ride away!
In 2009 the World Health Organisation (WHO) reported 1604 cases of paralytic polio in more than twenty countries. The fact that paralytic polio represents only 1% of all polio infections means the remaining 99% of those who only experience flu-like symptoms, or may even be asymptomatic, continue to spread the virus. There are four polio endemic countries – India, Pakistan, Afghanistan and Nigeria – but outbreaks continue to occur in neighbouring countries. Tajikistan, which had been polio-free since 1996, was reinfected with poliovirus from northern India in 2010. By mid June more than 200 children were paralysed and WHO reported a total number of 458 cases by the end of July. WHOs Polio Eradication website states “The Tajikistan experience reaffirms the imperative of completing polio eradication: until polio is eradicated, any country is at risk of an importation, and high population immunity is the only protection against a large outbreak.”
However, polio prevention and eradication is only one part of this story. Did you know that polio survivors today form the largest single disability group in the country? Yes, We’re Still Here! More than 40,000 Australians contracted paralytic polio between the 1930s and 1960s and as they head into their senior years, the development of new symptoms can occur, commonly known as the “Late Effects of Polio”. These symptoms are not infectious but can be physically debilitating, causing increased muscle weakness, pain and fatigue, to name a few. The late effects are even affecting a significant proportion of the 99% who had non-paralytic polio, swelling the number of sufferers considerably. Unfortunately, society’s short memory of recent history has resulted in many polio survivors who experience the late effects finding it difficult to obtain correct information, diagnosis and treatment from health professionals – their symptoms often dismissed as simply ‘ageing’.
Effective self-management of this chronic condition to minimise or stabilise the late effects is of paramount importance to polio survivors. Without strategic intervention, the Late Effects of Polio will become an increasing issue for communities around Australia as the population ages, and as the community diversifies through immigration. The large number of survivors who are now experiencing new symptoms has transformed the problem from an individual predicament to a social concern, and specific services will be required for at least the next 40-50 years.
Gillian Thomas, President of Polio Australia, and a survivor herself says, “The onset of the late effects is a cruel blow to polio survivors who fought hard to overcome their original disability. As we now increasingly lose mobility, function and independence, knowledgeable health care professionals who understand our unique issues are key to maintaining our quality of life and our ability to continue as valued, contributing members of society.” She adds, “This is why Polio Australia’s strategies for nationally consistent information and education programs are so essential.”
The need for Polio Australia’s intervention has been made clear to our politicians and the Federal Member for Ballarat, Catherine King, moved a motion on 17th August 2009 “That the House recognises that: the needs of polio survivors have been largely neglected since vaccination against the disease became a reality, and as they age with chronic disabilities this neglect must be addressed as a matter of urgency.”
October is Polio Awareness Month and to achieve this long overdue level of support for polio survivors, Polio Australia is seeking commitment for a combination of federal, corporate and philanthropic funding to progress strategies to ensure polio survivors get the services they so desperately need to maintain their quality of life.
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