Chronic UTI Australia (Incorporated) is a volunteer-run national patient advocacy organisation advocating for:
Our mission, key messages, and information about our management committee are contained in our previous annual reports, available at https://www.chronicutiaustralia.org.au/annual-reports/.
This brief report outlines our activities and provides a financial statement for the 2021-22 financial year.
Information, support and resources for patients
Throughout 2021-22, Chronic UTI Australia continued to engage with our patient community, and families and carers.
We used our website and social media channels to share new information, media articles, research and patient stories, and sent a regular e-newsletter our subscribers in Australia and other countries across the world. We monitored and responded to email enquiries from patients, journalists, drug company representatives, pharmacies, and medical practitioners.
In January 2022, we added a detailed information page to the website about interstitial cystitis/painful bladder syndrome (IC/PBS).
In February 2022, we published a tribute to Professor Malone-Lee, a leading chronic UTI clinician and researcher, in response to his very sad and unexpected death.
We also acquired a custom URL for our Youtube channel, which will make it easier for people to remember and search for the content we share.
Throughout the year, we published a number of articles, interviews and patient stories on Chronic UTI Australia’s blog.
We try to support our patient community to advocate for themselves and others who are experiencing chronic UTI. In April 2022, we funded a patient volunteer to study an online public health advocacy course run by University of Canberra.
“Hearing patient voices” survey
Our ‘Hearing patient voices’ survey was launched online at the end of September 2021 and taken offline in early January 2022. The survey was open to people aged 16 and over anywhere in the world who have, or suspect they have, a chronic UTI and to carers of children under 16 with diagnosed or suspected chronic UTI. The survey examined that quality-of-life impacts of chronic UTI on sufferers and the potential impacts on the health system.
The survey was completed by 410 people. The analysis revealed that it yielded strong and compelling data, which we will use in 2022-23 to support our advocacy activities with policy makers, health professionals and researchers – the people with the power to improve UTI diagnostic testing and treatments.
Another major activity in 2021-22 was our work with a local animation company to develop an animated ‘explainer’ video on UTI and the current problems with diagnostic testing and treatment. The two-minute video is designed to dispel existing myths and share accurate and up-to-date information about UTI. The target audience is:
The video will be launched in 2022-23 on the Chronic UTI Australia website and shared on our YouTube channel and across social media platforms frequented by the target groups identified. It is hoped the explainer video will be watched and then on-shared to peers, online community groups and other digital outlets.
Engagement with professional organisations and researchers
In 2021-22, we continued to strengthen our relationships with medical and research professionals.
In March 2022, we wrote to relevant Australian professional bodies to share information on the newly published study from the United Kingdom showing the benefits of the over-the-counter medication, Hiprex (Methenamine Hippurate), in helping to prevent UTI. We received several positive responses, including an invitation by the Urogynaecological Society of Australia to take part in their November 2023 conference.
An abstract on our chronic UTI survey findings was accepted for the 4th Clinical and Scientific Advances in Urinary Tract Infection annual conference, which was held by UTI Global Alliance in July 2022.
Engagement with partner patient advocacy organisations
Chronic UTI Australia also fosters connections to other patient advocacy organisations that have interests in common with us. One of our key partnerships is with Painaustralia, Australia’s leading pain advocacy body working to improve the quality-of-life of people living with all forms of pain.
A member of our management committee, Deirdre Pinto, was was appointed to the consumer advisory group of Painaustralia in November 2021 and has since contributed to several submissions and research processes.
In June 2022, a member of a management committee and a representative of our patient community were interviewed by a New Zealand journalist for an article in the Sunday Star-Times.
In 2021-22, we submitted two grant applications (to the Kirby Foundation and 100 Women). Unfortunately, neither application was successful.
Despite this, and as shown in Section 3 below, our financial position continued to improve due to an increase in the generous support from our corporate sponsor (via a share of the profits from the Feel Better Box and Joode businesses) and donations from our patient community.
Our full 2021/22 report can be accessed on the ACNC website
In presenting Chronic UTI Australia’s second annual report, I’m pleased to report on another year of achievement for our small organisation.
Throughout 2021, we engaged strongly with our patient community and strengthened our relationships with medical and research professionals.
A highlight of the year was our ‘Books for Doctors’ project, in which we asked members of our community to donate a copy of ‘Cystitis Unmasked’ – a new book from the United Kingdom’s leading UTI expert, Emeritus Professor James Malone-Lee – to health practitioners and professional organisations of their choice. As we report on page 14, this led to positive engagements and meetings with several health professional groups that were open to hearing more about our mission and activities.
As a follow-up to the ‘Books for Doctors’ project, I hosted an online interview in which Professor Malone- Lee answered questions from Australian patients and health practitioners. In a significant development for Chronic UTI Australia, a senior Australian urologist, Dr Anita Clarke, agreed to participate in the interview. Dr Clarke asked a series of insightful questions, focusing on challenging clinical scenarios.
Another highlight was the publication of an article on chronic UTI in Australia’s mainstream media. The article, titled ‘My daughter was one of thousands of Australians let down by inadequate UTI testing’, was written by our Secretary, Deirdre Pinto. It was initially published in the Australian online version of The Guardian, attracting 173 comments, and later selected for the print version of the Guardian Weekly in the last week of May 2021.
We also invested considerable effort in preparing for our ‘Hearing patient voices’ survey. We designed and pilot-tested a questionnaire and recruited participants for the survey. Using a grant awarded to us by Community Underwriting, we commissioned Websurvey to host the survey on a secure online portal. The survey was ongoing at the time of writing this annual report but is expected to be completed by close to 400 people. The findings of the survey will allow us to better understand our patient group and the quality-of-life impacts of chronic UTI and to gather data to support our future advocacy activities.
During the year, we have continued to communicate with patients, and their families and carers, through our website and social media channels, and have used these platforms to share new research, information, media articles and documentaries, and patient stories. We have been encouraged to hear from an increasing number of Australian chronic UTI sufferers who have found doctors willing to listen to the current research and provide necessary and effective treatment for their infections.
We are proud of our achievements this year, especially at a time when members of the Chronic UTI Australia management team – like everyone in the community – faced challenges associated with the COVID-19 pandemic. As volunteers with busy personal and professional lives, we have at times struggled with the workload associated with Chronic UTI Australia. However, we are fortunate to have had the support of a small but dedicated band of volunteers, who have helped us to manage our increasing email communications and social media presence. We are especially grateful to our volunteer Jan Payne who has been responding to email enquiries. Other members of our patient community have contributed financially to our organisations, and for this we are very grateful.
Our advocacy work is starting to take hold. We are being contacted by more people seeking information for themselves or a loved one, and professional organisations are starting to take notice. Despite our achievements, however, the fact that we hear almost daily from people suffering from untreated or poorly treated UTIs shows that we still have much work to do. We would welcome hearing from anyone who has an interest in being involved in our work and who shares our desire to constructively promote evidence-based messages about the inadequacies of current UTI testing and treatment.
Cofounder, Chair and Spokesperson
Click on the report cover page to read online
Download a printable copy here
UTI is a common bacterial infection that at least half of all women will experience at some point in their life. For around a third of these women, UTIs continue to be a problem and some develop into a debilitating chronic health condition that can negatively impact all aspects of life.
The cost of UTIs to the Australian health economy is $909 million each year. This is estimated to reach $1.6 billion within the next decade. As we witness common bacterial infections become increasingly deadly, it is imperative that we put UTIs on Australia’s public health agenda.
Chronic UTI Australia understands the urgency of addressing these issues and is working from a patient perspective to raise awareness and provide vital information to people suffering ongoing UTI problems (and their families and carers); to share relevant, up-to-date information with the medical community; and to connect with Australian and international UTI research groups.
Being a non-industry and non-government funded organisation, Chronic UTI Australia faces many challenges and relies totally on the generosity of volunteers who are passionate about changing the current trajectory of UTI. One of our greatest challenges to date is reluctance from medical authorities to accept the role outdated diagnostic and treatment guidelines play in this growing health problem.
Although these challenges may seem insurmountable for a newly established volunteer-run organisation, we look to successful advocacy organisations, such as Endometriosis Australia. This organisation has completely transformed the outlook for people who suffer from another debilitating and traditionally neglected health condition.
Chronic UTI Australia’s concerns, plans and early achievements are outlined in this report. Our future success depends heavily on funding and ongoing volunteer help from our immediate community and those who realise the importance of achieving our goals.
“Although it is disheartening to see the ever-expanding number of people seeking help and information about this condition, it reinforces just how necessary it is to have an advocacy organisation speaking on behalf of those affected.” Imelda Wilde, Chronic UTI Australia Chairperson
Download a printable copy here