Advocacy

Update on Quarterly Meetings with Polio Services Victoria

Our quarterly meetings, convened by PPV, involve Polio Services Victoria, Polio Australia, and PPV.  The aims of these meetings are to improve communication and support between these groups which in turn benefits the polio community. We use this meeting to advocate to PSV, which is the key service provider in Victoria for people with polio, on behalf users and potential users of the services. It also is a way for PSV to consult with representative groups about its services, initiatives and communication. We generally meet four times a year.

Our last meeting was on 5 June. Currently PSV is reviewing its physical layout in the Bolte wing at St Vincent’s to create a more client friendly, efficient and pleasant environment for those people who are using their services. The changes being made so far are to seating and signage. More substantial changes involving the reception area and access doors will depend on future capital budgets. If you have any feedback about the physical layout and/or PSV services, they would be very pleased to hear from you.

We are also working towards all Victorian hospitals having a polio alert as part of their admission procedures. This is very important for people with polio, particularly with regard to anaesthesia. Anaesthetists need to know when patients have had polio. St.Vincent’s has a Polio Alert that is activated when an in patient informs the hospital that they have had polio. We know that some hospitals have a type of polio alert as an automatic part of their admission procedures (i.e with a question about polio history on the in-take form) and we are looking to identify these and use them as a basis for approaching other hospitals.

Polio Australia is trying to get a polio alert included in the My Health Records system. Remember that if you are admitted to hospital for any reason, always tell them you have had polio.  PSV has recieved further funding to review long standing open client’s cases. Please contact them directly on Tel: (0 3) 92 31 3900 or 1800 030 324

Submission to the Aged Care Royal Commission – we want to hear from you

We plan to make a submission to the Royal Commission into Aged Care Services. There are many issues of concern about the Aged Care system for people with disabilities and we want to particularly draw attention to the special needs of people who have had polio.

We know that people with disabilities do not receive the same level of support in the Aged Care system as under the NDIS.

We also know that people with polio in Aged Care facilities require additional supports and there have been some reports of difficulties accessing these.

We’d like to hear from you about your experiences of aged care services, either in home care or aged care facility.

What do you think are the issues and how do you think the aged care system, or a particular provider, can be improved to better meet your needs?

If you would like to look up the Guidelines for making a submission to the Royal Commission, you can go to this link:

https://agedcare.royalcommission.gov.au/submissions/Pages/Guidance-on-making-a-submission.aspx

Please get back to us by the end of March.
Looking forward to hearing from you,

Best Wishes,

Ron Bell
President
Post Polio Victoria Inc.

Download and Share this letter as a PDF

 

Response to Australian Building Codes Board’s Accessible Housing Options Paper

At the public forum, Australian Building Codes Board’s (ABCB’s) Senior Project Officer, Kieran O’Donnell, stated that there had to be an identified, rational, quantifiable, rigorously demonstrated need in order for the National Construction Code to be revised:

And we are trying to figure out what that need is…(and) how that unmet need is quantified… We need further evidence and information if we’re going to be able to justify advising a regulatory change to the National Construction Code. (Hunter, quoted in Polio Oz News, Dec 2018).

He stated that there was not much evidence available to support a case for revising the National Construction Code to include accessibility for ageing people; people living with disabilities; young families; people facing injury; or people living with illness. It seemed very obvious, to the people attending the consultation, that the ABCB would give a heavier weighting to quantitative evidence – of the sort provided by randomised clinical control studies and multiple regressions and accounting-based computations – than to the actual quality of the lived experience of all of the people whose lives would be affected by the decision on the m-i-n-i-m-u-m  standards of housing design. Why not the ‘optimum’ standards of design to benefit the whole of society?

This approach immediately put ordinary taxpayers and citizens and polio survivors at a disadvantage, placing the onus of proof onto us to prove that we need a particular universal design level for housing. Rather than challenging the ABCB to prove why a particular standard of design that is appropriate to the needs of the abovementioned populations should not be incorporated into the National Construction Code.

In this Response to the ABCB’s Options Paper PPV presents polio survivors’ perspectives and lived experiences to inform the proposed revision of the National Construction Code. Evidence is provided of the size of the post-polio population, our needs, and Case Studies of how polio survivors have – or have not – attained appropriately accessible housing to match their needs, which can inform the Regulation Impact Statement (RIS).

Download this submission as a PDF

Continue reading Response to Australian Building Codes Board’s Accessible Housing Options Paper

Shared Brochure with Polio Australia and Polio Network Victoria

Post Polio Victoria and Polio Australia have collaborated to produce this new brochure to introduce the three organisations for people with polio working in Victoria. The brochures will be distributed to medical and community centers to reach out to people with polio who may not have heard of our work.

You can download a copy here, or contact us if you’d like us to post you some printed copies.

Joint communique on equal access to assistive technology for older people with disability

Assistive technology is a powerful tool that facilitates social inclusion, economic
participation and autonomy while creating cost benefits to health and social services. If a drug was discovered with a similar cost-profile it would be hailed as the wonder-drug of the age. While the National Disability Insurance Scheme provides a funding pathway to meet the assistive technology needs of younger Victorians with disability, the current policy context does not provide equitable access for older people with disability who do not meet the age eligibility requirements for the scheme.

The Assistive Technology for Older People Alliance (ATOP) formed in mid-2017 amidst mounting concern over the barriers experienced by people aged over 65 years in accessing affordable and timely assistive technology (AT). Increasing service gaps, inadequate AT assessment and compromises on care and safety in order to purchase Assistive Technology brought together peak disability advocacy and ageing organisations alongside consumer advocates.

Read ATOP’s Joint Communique here

 

National Aids and Equipment Strategy

Replacement of aids and equipment like calipers, walking frames and power chairs happens all too often. Then there is the need to modify our homes to accommodate increasing physical problems. The maze of documents put out by NDIS, My Aged Care and all the government departments which appear to be involved in our lives, is difficult to get through. We need to know who can assist us financially with what we need as these aids and equipment are quite expensive.

Continue reading National Aids and Equipment Strategy

Update on our meetings with Polio Services Victoria

April 2017

Two meetings between PSV, represented by Manager Allied Health and Community Programs, Kathryn Bailey and Coordinator Claire Formby, and polio community representatives from Bayside Support Group, PPV and PNV – Liz Telford, Margaret Cooper, Ron Exiner, Peter Willcocks, Bev Watson and Mary-Ann Leithoff from Polio Australia have taken place. This is the key consultation for PSV.

Continue reading Update on our meetings with Polio Services Victoria

Quality patient care-the polio survivor’s perspective

Abstract of PPV’s conference paper presented at the Australasian Pacific Post Polio Conference September 2016

Polio requires the person to spend considerable time and effort to obtain the information they require enabling them to adapt to the challenges of living with the condition of post polio. However, this knowledge and expertise is rarely used for the planning and provision of polio healthcare.

Continue reading Quality patient care-the polio survivor’s perspective

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.

Continue reading It shouldn’t all be up to us to educate and inform: Improving Hospital Risks for Post polio patients.

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.

Read the full article here

‘Breathe Safely, Live Well’ Pilot Project Proposal

The proposed project involves taking the early work done by St Vincent’s Hospital Melbourne, developing it further, disseminating it throughout the Victorian health system before its introduction into the Australian health system. The project involves working with the relevant professional associations and education authorities to help ensure that health providers are aware of and trained in dealing with the approximately 150,000 people with polio, post polio syndrome or late effects of polio in Australia.

Download the Breathe Safely Live Well Pilot Project Outline

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.