Australians with post polio syndrome invited to Adelaide meeting:
https://www.mandurahmail.com.au/story/7990945/polio-crusaders-set-sights-on-ndis/?cs=289
Photo above: PPV Vice President: Peter Freckleton
In the News
Recognition at Last
Inclusive Communities and Services for
People Ageing with Post-Polio Syndrome
On 22nd November 2022, The Australian Association of Gerontology (AAG) partnered with Post Polio Victoria and Celebrate Ageing Ltd to facilitate a workshop on the experiences and needs of people ageing with
Post Polio Syndrome (PPS). The workshop at the AAG annual conference in Adelaide explored:
• The experiences of polio survivors
• The perspectives of researchers and clinicians
• The views of aged care service providers.
The workshop included a paper on the unique experiences and needs of people ageing with PPS and suggestions for inclusive services and communities. The development of the paper, which will be led by AAG, is expected to influence change – Recognition at Last.
The voices of people ageing with PPS have not been heard. Planning for communities and services has not taken the needs of people ageing with PPS into account. This is the first national workshop calling for that to change – and we would value your support.
Please find below our shared stories:
PPV President: Shirley Glance OAM
https://www.youtube.com/watch?v=PXs434IAzwc&t=20s
PPV Vice President: Peter Freckleton
https://www.youtube.com/watch?v=jBlaVZT5m04&t=11s
PPV Secretary: Robyn Abrahams
https://www.youtube.com/watch?v=rHjm1uDGq10&t=66s
The Hon Kim Beazley AC
https://www.youtube.com/watch?v=TmvuX0fwF-M&t=22s
For more information
• Shirley Glance OAM President Post Polio Victoria: 0411 660 860
• Dr Catherine Barrett, Director Celebrate Ageing Ltd: 0429 582 237
Workshop Link: Polio (aagconference.asn.au)
Thousands of Vulnerable Australians denied ‘life-changing’ support IG News – PPV Committee Member Robyn Abrahams features on 9News.
Please click on the link below to access the report
News Updates – also located on the PPV FB Site
A class action has been launched against the NDIS to change the eligibility criteria so people over 65 can apply.
Wheelchair bound, former Wallabies coach John Connolly has thrown his support behind the move claiming the system is ‘broken’.
7NEWS at 6pm. More local news: 7news.com.au/news/qld
3/10/22 is international day for older Australians. It’s a day to reflect on ageism in our communities and celebrate the older people in our lives. In the disability community people 65+ being ineligible for the NDIS is beyond unacceptable. It needs to change!
PPV on Q&A – ABC with Stan Grant
On Thursday 4/8/2022 evening, PPV President Shirley Glance OAM joined the audience of Q&A with Stan Grant on the ABC. PPV committee member Robyn Abrahams was also in attendance.
If you were unable to watch it live last, please find below the recorded links and – Transcript
President Shirley spoken confidently asking the following question and making the following statement.
Why do people with a disability always have to explain their disability and justify their existence? Why is it that those with polio and other disabilities, that are over the age of 65 have been excluded from accessing the NDIS and are not receiving adequate care via the aged care system? Our parents were assured that we would be looked after, but what’s going to happen to us now?
https://twitter.com/i/status/1555153124075388933
ABC Website
https://www.abc.net.au/qanda/2022-08-04/13993030
Thank you and please reach out to PPV at postpoliovictoria@nullgmail.com if you have any questions, we would love to hear your thoughts or feedback.
Thank you
ABC News – US Reports first Polio case in nearly a decade!
Please click on the link below to access the full article
https://www.abc.net.au/news/2022-07-22/us-reports-first-polio-case-in-nearly-a-decade/101262580
How Melbourne’s former infectious diseases hospital helped prepare us for COVID-19
President Shirley Glance OAM and Secretary Robyn Abrahams were interviewed by SBS – article link below.
Both Shirley and Robyn also appeared on SBS News evening of the 30/1/2022 – video on the PPV FB site.
Esther missed out on the polio vaccine. Her children won’t miss their COVID jabs
30 January 2022
SBS
Polio survivors in Australia share their views on the importance of getting vaccinated against COVID-19, particularly as schools prepare to welcome children back.
Yesterday, Today and Tomorrow: Plagues and Preventing Panic
Please see below YouTube video by Dr Elizabeth Finkel AM from June 2020 titled: Yesterday, Today and Tomorrow: Plagues and Preventing Panic
Article in Sydney Morning Herald & The Age – 17th July 2021
Article in The Sydney Morning Herald (SMH) and The Age.
‘Morally Wrong and Unfair'” Campaign to end NDIS’ age discrimination’
Post Polio Victoria Inc advocating for change!
The Age Article and PPV Response
Please see link to below article that was published in The Age newspaper on 3rd May 2021 – Falling off the ‘magical cliff’: Call for review of NDIS age limit:
As Polio survivors, we at Post Polio Victoria (PPV), thank you Bill Moss for raising this issue, we are acutely aware of the age discrimination against over 65’s in the NDIS. We call for immediate inclusion for fair and equal service for all PWD who are 65+. This would enable PWD and their families to live a full and happy productive, dignified life.
Please see below private Letters To The Editor that were published in The Age from:
Shirley Glance OAM – president of Post Polio Victoria
Dr Peter Freckleton – board member
Liz Telford OAM – past president of Post Polio Victoria
The Age Letters To The Editor May 2021
ABC Radio Interview – Peter Freckleton with Virginia Trioli – Friday 5th March 2021
If you missed the interview on Friday 5th March with Peter Freckleton on #ABC #VirginiaTrioli
Thank you Peter for sharing your story so publicly.
Here it is:
COVID-19 Vaccines Update – Accredited Vaccination Training Program
Please see below links for updates on the COVID-19 vaccines:
https://www.tga.gov.au/covid-19-vaccine-safety-monitoring-and-reporting
COVID-19 Vaccines Update
Please see below links for updates on the COVID-19 vaccine roll-out:
https://www.health.gov.au/resources/collections/covid-19-vaccine-aged-care-stakeholder-kit
https://www.health.gov.au/resources/collections/covid-19-vaccine-aged-care-stakeholder-kit
Red Cross RediPlan Program
Please read attached information from the Australian Red Cross about the Extreme Heat Response Program.
There are a limited number of registrations still available for HeatREDi this summer. If you or anyone you know may benefit from receiving calls from the HeatREDi program, please register here.
COVID-19 Vaccine Information for Polio Survivors
This information is provided from our Post Polio Health International. We are aware that the possibility of the COVID-19 vaccine coming to Australia in March 2021. This information has come from America but please click on the link for more information:
Patients with a polio history — what anaesthetists need to know
Liz Telford OAM prepared this article for the Australia and New Zealand College of Anaesthetists Spring 2020 edition
Polio survivors see in coronavirus era levels of fear not seen since poliomyelitis epidemics
Larissa Romensky, ABC News
Polio survivors have noted striking similarities between the series of 20th-century epidemics and today’s coronavirus — two very infectious diseases that changed the world…
With the elderly already more vulnerable to coronavirus, there is also an additional fear felt by many polio survivors.
“We’ve battled through this far, and we want to stay alive,” said PPV member Peter Freckleton.
In a letter to the Prime Minister and Federal and state health ministers on behalf of polio survivors from PPV, polio survivors insist on being given full treatment if infected with COVID-19, including the use of ventilators.
NDIS: Inequality for the aged
Letter to the Age Published May 11th 2019
The National Disability Insurance Scheme was a life-changing idea but before it got going, it was sullied by irrational ageism – the exclusion of the over-65s. A prima facie offence against the Age Discrimination Act so obvious that the act was hastily changed to outlaw complaints.
Particularly anomalous is the rejection of survivors of poliomyelitis. That was a childhood condition yet survivors are shunted onto aged care, which is illogical. Polio is not age-related, and aged care packages are a mirage. People die waiting for them. This discrimination was driven by penny-pinching, not reason, because polio as a medical condition logically falls within the NDIS. Requirements are clearly definable and modest, and the group involved is finite. The dreaded “floodgates” would not be opened by NDIS coverage.
Ron Bell’s Stance Control KAFO Orthotics
Our President, Ron Bell, was first Australian to be fitted with a Stance Control KAFO in 2005 by Doctor Darren Pereira. His remarkable improvement is documented in these Youtube videos.
He talks about the Orthotic and how it works in this video
Living well with breast cancer and a disability
In this video, Breast Cancer Network Australia members Niki, Angela and Sara Glance – Post Polio Victoria committee member – share their experience of being diagnosed with breast cancer while living with a disability. Health professionals also speak about the unique challenges for people with a disability diagnosed with breast cancer.
PPV members nominated for Human Rights Commissioner’s Best Achievement in Human Rights
PPV members Dr Margaret Cooper and Frances Henke have been nominated for the Australian Human Rights Commissioner’s Best Achievement in Human Rights.
It shouldn’t all be up to us to educate and inform: Improving Hospital Risks for Post polio patients.
Liz Telford and Fleur Rubens Polio Oz Summer Edition 2016
Since PPV was established five years ago, in response to people’s concerns about reduced services and lack of information, many stories have been shared about hospital and other medical experiences. These have included misdiagnoses, anesthesia issues, respiratory difficulties after surgery, inappropriate after surgery care, spinal injury following surgery and even unexpected deaths.
What is happening to patients who have had polio? The role of the patient in assessment and management
PPV’s Margaret Cooper’s Article was first published in Australian Family Physician Volume 45, No.7, July 2016 Pages 529-530.
Patients who have had polio in the past can present as a challenge to clinical assessment. The majority of these patients are older than 60 years of age and may report a range of symptoms that relate to impairment progression in the form of postpolio syndrome but could also be secondary health conditions, agerelated concerns or an unrelated health matter. Factors involved in the management of patients who have had polio include careful diagnosis, recognition of adaptive strategies and enhancement of the patient’s selfcare skills.
‘The Golden Age’ by Joan London wins the Miles Franklin award
The Golden Age, is about the love between two polio-stricken children at a rehabilitation facility in suburban Perth in the early 1950s
ABC News: Australia’s forgotten disability – Post Polio Syndrome
Published on Nov 1, 2015
POST POLIO SYNDROME: AUSTRALIA’S FORGOTTEN DISABILITY
The World Health Organisation declared Australia polio free in 2000. But the disease is still very much with us.
It’s estimated there are 400,000 Australian polio survivors. And for thousands, the disease is not finished. Decades after they contracted polio, symptoms can return in the form of Post Polio Syndrome (PPS).
Polio alert is critical
Liz Telford and Fleur Rubens letter to The Age was published on August 18, 2015
Julia Medew highlights errors in clinical management that have occurred in our hospitals with some devastating outcomes (“Hundreds of patients’ deaths preventable”, 15/8). A lack of medical knowledge is another cause. Here is a real example. In 2011, a man died unexpectedly in a major hospital a month after surgery. He had a history of polio. A surgical error considered minor (as it is for someone without post polio) combined with inappropriate post-surgery care (due to hospital ignorance of post-polio management) resulted in respiratory failure. The cause of death was given as “post polio”, although it was not the disease process but clinical management that caused this man’s preventable death.
Anyone who contracted polio, whether paralysed or not (an estimated 400,000 Australians) may develop post polio, a condition that may affect the central nervous and respiratory systems. One Victorian hospital now has a polio medical alert for patients known to have had polio. All hospitals need to do the same, and patients should alert staff if they ever contracted polio. Despite the successful global polio eradication campaign, post polio will be around for decades to come and hospital staff must be educated.
Polio Australia’s Gillian Thomas on ABC’s Q&A with Bill Gates
Polio Australia is delighted to advise that our Vice President, Gillian Thomas, has been invited to be in the audience of a “Special ABC TV Q&A Forum” being televised on Tuesday 28 May, 2013 with “Bill Gates.”
Gates will be speaking on the important issue of ‘Investment in Global Health and Development’ at the University of New South Wales in the Clancy Auditorium, UNSW Kensington campus.
We recommend you watch what is sure to be a very interesting episode of Q&A if you get the chance.
The Senior: Polio Back to Bite its Victims
PPV President and Our Issues in the October issue of “The Senior”
Gippsland Sentinel – Polio Advocacy Begins
The Age: Cruel syndrome brings return of polio symptoms
Ian Munro
IT MAY be the cruellest twist of a cruel disease: after you’ve recovered and built yourself a life polio can gift you a few decades of normalcy. Just long enough so the facts of how it shaped your childhood fades away. Then, in a different way it returns, to steal back that normal life.