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.

The post NDIS: Inequality for the aged appeared first on Post Polio Victoria.

He talks about the Orthotic and how it works in this video

The post Ron Bell’s Stance Control KAFO Orthotics appeared first on Post Polio Victoria.

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.

The post Living well with breast cancer and a disability appeared first on Post Polio Victoria.

Dr Margaret Cooper

Nominated by Frances Henke

For over fifty years, Margaret Maxine Cooper has played a leading role in advocating on behalf of people with disability. Recently, she set up Post Polio Victoria, providing research to and communication with the government to get the needs of polio survivors recognised. She is also an active member of the South Eastern Polio Support Group, supports migrant polio survivors, and has taken an upfront part in the launch of the State Government’s vaccination program to ensure others do not suffer as she has.

Margaret began her journey into advocacy at age 10 by getting a good education, despite the obstacles that confronted children with disabilities at the time. She fought hard against authorities who planned to turn her school (Yooralla) into a primary only institution, and undertook tertiary training as a Social Worker at the University of Melbourne.

Watching the mistreatment of other patients gave Margaret the courage to speak out and change things. She began moving in activist circles in the 1970s, participating in planning the International Year of the Disabled Person (IYDP), an event that made a huge difference to the lives of people with disabilities. Throughout the 1970s and 1980s, Margaret was identified as someone who could lead and be a strong role model. Margaret took on the role of Vice-President (Policy) with Disabled People’s International (DPI Australia).

Her experience as a social worker seeing domestic violence, and experience of gender equality, led to some interesting discoveries about the needs of women with disabilities, especially statistics showing that, while all people with disability suffered disadvantage, women wiht disabilities were particularly disadvantaged.

She attended the DPI Asia Pacific regional Assembly in 1984 and DPI World Assembly in 1985. Margaret was one of large group of women who refused to participate in the conference unless their issues were discussed at length. Her leadership placed women’s issues firmly on DPI Australia’s agenda.

Margaret was then involved in the early committees which led to the establishment of Women with Disabilities Victoria and Women with Disabilities Australia.

Frances Henke

Nomination endorsed by Mr. Peter Batey OAM and Mr. Michael Hast.

Fran has been a leader in polio groups for over 25 years as well as a celebrated writer and journalist. Confined to bed for many years, Fran developed a love of writing, and even before she left school she was looking after the school magazine, setting the groundwork for a 50 year career in journalism. A move to The Australian as theatre critic was accompanied by appointment to the Commonwealth Film Censorship Board where she served out her term before returning full-time to newspapers.

At this stage her medical problems started to increase and she discovered that the polio virus which had remained dormant for 45 years was again active. Research revealed that this phenomenon was worldwide but little recognised so she started to writhe about “post polio syndrome” as the condition has become known, the first piece appearing in The Independent Monthly. A flood of response showed that many others were suffering the same symptoms with little information available and little recognition by the medical profession. Gathering material from around the world she continued writing about the subject and over a period of 25 years she has become one of the leading communicators in the field.

In 2012, she compiled Iron Wills: Victorian Polio Survivors Stories, commended by the Royal Historical Society as a community history, then Polio Day Cookbook: fine food for the fatigued to help provide nutritional information for those too tired to cook properly. She has now written 20 books with two more on the way.

At 60 years of age she went back to college and completed a Diploma in Visual Arts with High Distinctions in nearly every subject. Her sculptures, paintings, and photographs and widely recognised and applauded.

The post PPV members nominated for Human Rights Commissioner’s Best Achievement in Human Rights appeared first on Post Polio Victoria.

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.

With the poliovirus now no longer seen, hospital staff are not trained in recognizing post polio or how to manage it. The medical profession has overlooked that people who have already contracted polio are now presenting with general medical issues. Medical training does not cover post polio implications and patients are often left to educate their doctors and nursing staff.

While some people report that they have simply provided their anesthetist or surgeon with a flyer about post polio and this has been accepted with good will and a positive outcome, many do not have that information to provide. Others have had doctors reject the information. This can cause anxiety and distress in the patient, and also place him or her at serious risk. It is well documented that people with post polio are likely to have increased sensitivity to opiates, muscle relaxants, sedative and anesthetic drugs leading to recommendations to start low and titrate carefully (Calmes, SH 2014, Lambert DA, Giannouli E, Schmidt BJ 2005, Bruno, RL, 2016). This information is widely available, yet not, apparently, read by doctors.

It is not as well known though that non- paralytic polio also has impacts on the patient’s general health. For people who contracted polio whether it was paralytic or non-paralytic, their rate of hospitalization is 1.5 times greater than the general population. (Kay, L. 2016). This suggests two important factors: hospitals are more likely to encounter people with polio than if they had not had polio, and many of these people will not themselves be aware that their polio history is relevant.

The difference in responses between doctors when provided with information by the patient and the lack of polio knowledge of both doctors and the patients are reasons we believe that it should be the responsibility of the hospital, and not the patient, to ensure that their history of polio is taken into account. The only way to do this is for there to be a standard question at in-take, in the same way that it is standard to ask about heart, diabetes and other conditions and for this to trigger a set of clinical protocols.

Atul Gawande, a professor of surgery at Harvard Medical School is concerned about the complexity of medicine in the modern world. He conducted a study in eight hospitals around the world instituting checklists in surgery situations. He reports complication improvement of 35% and that death rate fell 47%.

One of our compatriots had an unexpected death after surgery in hospital due to a series of inappropriate management events combined with a lack of listening to the patient and the patient’s concerned family member. An outcome following this situation has been the development of a Polio Clinical Alert, which that hospital now attaches to the file of any inpatient that identifies as having history of polio. This identifies some post polio complications and respiratory considerations for medical staff to be aware of and where to get more information.

Regrettably, the hospital does not go as far as taking the initiative and asking the question at intake “Have you ever had polio?” which would trigger the alert. It is still up to the patient or the family to recognize the need to mention that the person has a history of polio.

Unfortunately, many people are unaware that their polio history may be relevant, particularly when there has been no paralysis. As already highlighted, a history of polio, whether or not it resulted in obvious paralysis may be enough to have affected the patient neurologically and affected their muscle, tendon and spinal development in ways that are not externally apparent but may be important to be aware of in surgery.

In his book “The Checklist Manifesto” Gawande notes that the success of the checklist program depends on hospital culture and the implementation process of the checklists, including the ability to implement the checklists. This requires values such as humility and teamwork, as opposed to those of independence and self-sufficiency which are more commonly associated with medicine. He comments that there was sometimes deep resistance to checklists within hospitals. Interestingly, we were told by one hospital that they did not like protocols, as they preferred their doctors to “think for themselves”. We disagree with this view. On the contrary, we think that armed with clear factual information about post polio, doctors are able to think more specifically about what is required. Another said “We wouldn’t make mistakes like that”, perhaps highlighting again the difficulty medical staff have in recognizing the value in planned teamwork and all staff having information.

The “Alert” states for example “Patients who were ventilated with their initial illness (were in an iron lung), who have bulbar dysfunction or who have kyphoscoliosis are particularly at risk of respiratory complications. These patients are frequently very sensitive to sedatives and narcotics so that usual doses may result in respiratory failure and death”. This not only alerts staff to anesthesia and medication issues, but muscular skeletal issues, mobility issues, dysphagia, sleep disorderered breathing, reduced exercise tolerance, risk of heart failure or respiratory failure and other concerns.

These may indicate particular drug management, nursing care in theatre, and post surgery extra physiotherapy, respiratory specialist involvement, occupational therapy and extra nursing care. A home rehabilitation plan may need to be discussed. Teamwork is essential, as is listening to the patient. The question “Have you had polio” on the intake form with a positive response setting off a “Post-polio Protocol” is vital trigger to help staff with critical differences in a patient with a history of polio.

Individuals can help improve hospital systems too. If a hospitalization is known in advance, the patient can provide their hospital with the references below and can ask the staff whether they have systems in place for managing the different issues that may arise for people with post polio. If the answer is no, a follow up letter to the hospital director discussing how information at hand may improve the hospital experience for you. This feedback could encourage the hospital to consider their knowledge and capacity to respond to patients with a history of polio and may help to put a set of protocols into place.

References

Bruno RL. Preventing complications in polio survivors undergoing surgery. Post- Polio Sequelae Monograph Series. Volume 7(2). Hackensack; Harvest Press, 1997, Revised 2002. http://postpolioinfo.com/library/surg.pdf

Calmes, S. (2014) Anesthesia Specifics for PPS [html]. Retrieved from http://www.post-polio.org/edu/anesthesia-specifics.html.

Gawande Atul (2009) The Checklist Manifesto: How to Get Things Right Henry Holt and Company

Kay, L Long-term mortality and morbidity following poliomyelitis. A register case control study of a cohort of Danish poliomyelitis patients, Symposium lecture SL03 1st Australasia-Pacific Post-Polio Conference, Sydney September 2016, as presented in the Journal of Rehabilitation Medicine, Vol 48 No 8 September 2016 p741

Lambert DA, Giannouli E, Schmidt BJ (2005). Post polio Syndrome and Anesthesia. Anesthesiology.103 (3): 638-44.

The post It shouldn’t all be up to us to educate and inform: Improving Hospital Risks for Post polio patients. appeared first on Post Polio Victoria.

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.

Read the full article here

The post What is happening to patients who have had polio? The role of the patient in assessment and management appeared first on Post Polio Victoria.

Read the review in The Monthly

The post ‘The Golden Age’ by Joan London wins the Miles Franklin award appeared first on Post Polio Victoria.

The post ABC News: Australia’s forgotten disability – Post Polio Syndrome appeared first on Post Polio Victoria.

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.

The post Polio alert is critical appeared first on Post Polio Victoria.

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 post Polio Australia’s Gillian Thomas on ABC’s Q&A with Bill Gates appeared first on Post Polio Victoria.