Reflections from 2024

20 Dec Reflections from 2024

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2024 has been a busy year for Chronic UTI Australia.  Our chairperson, Deirdre Pinto, recaps the progress and achievements so far, important work that still needs to be done to have chronic UTI formally recognised in Australia and reflected in the guideines, and how you can help.

A reflection on our progress and future challenges

Ten years ago, before I’d ever heard of chronic UTI, I wrote a master’s thesis on patient advocacy for rare disease research. I surveyed more than 100 Australian rare disease patient organisations and interviewed many of their leaders. I had cause to re-read my thesis the other day and was struck by how closely the challenges and contributions of those organisations mirror those of Chronic UTI Australia.

True, chronic urinary tract infection (UTI) is not a rare disease—far from it. It starts with an infection so common that it will affect at least half of all women in their lifetime, with about a quarter of those treated for an infection suffering a recurrence within a few months. People who develop chronic, embedded UTI often, but not always, do so after experiencing recurrent UTI for months, years or even decades.

Nonetheless, as advocates for people with chronic UTI, we face challenges that are familiar to many rare disease patient organisations. These include:

• Lack of awareness, recognition and understanding of the condition among many health professionals
• Diagnostic delays and misdiagnosis
• Unclear pathways to specialists who can help
• Lack of research into diagnosis and treatment, and poor translation of existing research evidence into clinical practice
• A perception that the condition, however distressing for those affected, is a ‘niche’ issue and not a public health priority
• The fact that patients have debilitating health issues and related to this, serious financial and emotional strains that deplete their time and energy for patient advocacy.

 

Creating Chronic UTI Australia

Chronic UTI Australia grew from the experiences of a small group of Australian women who met online. Through sharing stories about their difficulties getting appropriate diagnosis and treatment, they realised that the number of people suffering with undiagnosed chronic UTI was much greater than generally recognised.

From a modest start as a patient information website, several of us formally established Chronic UTI Australia in 2018–2019. While supporting patients with high quality, evidence-based information about UTI remains a core part of our mission, incorporation and registration as an official charity has allowed us to campaign for better UTI diagnosis and treatment in Australia. We also support Australian and international research aimed at identifying better diagnostic methods and quicker and safer treatments for chronic UTI.

Our work so far

Today, Chronic UTI Australia remains Australia’s only national patient organisation advocating for people affected by UTI. We have worked hard on behalf of the patient community and are proud of our achievements.

Throughout the last five years, we have engaged strongly with our patient community and established relationships with medical and research professionals, both in Australia and overseas. We continually monitor and share new research, information and media stories relevant to chronic UTI, and have created a range of educational resources for patients and their families.

We put a lot of effort into understanding the experiences and needs of people affected by chronic UTI.  Our ‘Hearing patient voices’ survey, launched in April 2023, was completed by more than 400 people with chronic UTI symptoms. The survey allowed us to better understand the quality-of-life impacts of chronic UTI and gave us a rich source of data to support our advocacy activities. Our appreciation of patient perspectives is also underpinned by our close relationship with the Recurrent and Chronic UTI Support Group (Australia and New Zealand), which includes having a support group representative on our management committee.

We believe we have been instrumental in raising awareness of chronic UTI, and the problems with current UTI testing and treatment. We have done this via proactive engagement—with the media, professional organisations, Australian and international patient and health advocacy groups, government bodies—and through attendance at conferences and meetings, and through making submissions to relevant reviews and enquiries.

In February this year, we had a major media breakthrough when chronic UTI was highlighted as a front-page news story in The Weekend Australian and as a feature article in The Weekend Australian Magazine. The articles featured several prominent health professionals—including the President of the Urological Society of Australia and New Zealand (USANZ) and the President of the Australia Medical Association (AMA)—calling for changes in UTI information, diagnostics and treatment, and better recognition and understanding of chronic, embedded infections. Since then, Chronic UTI Australia has participated in at least half a dozen other Australian news stories in television, radio and print media—our busiest media year yet!

Following their participation in a roundtable organised by Chronic UTI Australia in May this year, the USANZ President, the AMA President and a representative of the Royal Australian and New Zealand College of General Practitioners (RANZCGP) collaborated on an article for MJA (Medical Journal of Australia) Insight. The article calls for a paradigm shift by the medical profession when it comes to UTI and endorses our concerns about lack of recognition of chronic UTI, and problems with its diagnosis and treatment.

We were excited to see collaboration between UTI researchers, clinicians and patient groups at the inaugural Monash Bladder and Kidney Health Symposium in Melbourne on 15 November. This brought together many people passionate about improving the lives of people with bladder and kidney conditions. I was the first speaker of the day, followed by London-based Professor Jennifer Rohn (Chronic UTI Group, UCL), who gave an inspirational talk on advances in understanding UTI and potential new treatment approaches. Professor Rohn’s attendance at the event was supported by Chronic UTI Australia.

Our path forward

We have been encouraged to hear from an increasing number of Australian chronic UTI sufferers who have found doctors, mostly GPs, willing to listen to the current research and provide necessary and effective treatment for their infections.

However, Chronic UTI Australia is still contacted, with depressing regularity, by women, men and parents of children whose doctors deny the existence of chronic UTI and the fallibility of standard UTI tests, or who have been misdiagnosed or told that nothing can be done about their painful symptoms. These people believe—probably correctly—that their embedded infections have been caused by inappropriate treatment of acute and recurrent UTI.

Despite the growing recognition of chronic UTI and medical leaders’ statements of support for the position of Chronic UTI Australia, there have been no tangible changes to ensure widespread recognition and understanding of chronic UTI. People who are suffering now cannot afford to wait years or decades for knowledge about prevention, diagnosis and treatment of the condition to trickle down to the general medical community.

Despite seemingly positive meetings with various health-related stakeholder organisations, apart from our own website, accurate information about chronic UTI is not available to Australians or most doctors. The various UTI guidelines that exist in Australia ignore the scientific evidence about the failures of dipstick and culture tests, fail to offer evidence-based advice for doctors treating recurrent UTI, and fail to mention chronic UTI at all. Nor are there any clear referral pathways to specialist treatment for the significant number of women who are failed by standard primary care diagnosis and treatment for UTI, and who go on to develop life-changing chronic infections. And, in the absence of formal recognition of chronic UTI, we lack the data we need to convince government and other authorities that chronic UTI is neither rare nor trivial and, in our opinion and that of others, is likely to be having a growing public health impact.

These hurdles are not insurmountable, but they do require action from healthcare professional bodies, researchers and research funders, and government agencies—all in collaboration with proactive patients and their representatives. We have heard from patients and their representatives that we must call on the relevant authorities to:

• Educate the public and medical professionals by publishing evidence-based, patient-centred and nationally consistent guidelines and information about UTI, including chronic UTI.
• Establish one or more specialist clinics dedicated to chronic and other forms of difficult-to-treat UTI. Currently, unlike the United Kingdom and some other countries, there are no such clinics in Australia.
• Increase funding for UTI research, especially applied and translational research aimed at bringing better diagnostic tests and therapeutics to market.
• Collect better information about UTI, including on chronic UTI, in Australia’s hospital and primary care data collections.

 

We need your help

Like the rare disease patient organisations that I mentioned at the start of this article, Chronic UTI Australia faces challenges to its sustainability. The people who volunteer for the organisation all have many other personal and professional commitments, as well as their own health issues. Burnout of key volunteers is a real threat, especially given the increasing workload arising from our success in attracting attention to the cause. Ensuring we have enough funds to run the organisation, including maintaining our excellent website and producing high-quality educational resources, is another ongoing challenge.

Chronic UTI Australia is run by a small group of volunteers. Our management committee comprises me as Chairperson, Andrea Sherwin (Public Officer and Secretary), Monica Kemp (Treasurer), Gaylene Weir, Susan Hawes, Grace Patterson and Jan Payne. We are assisted from time-to-time by other members of the patient community, and greatly value the time and skills they offer us. Those currently supporting us include Sally Murali, who works on our social media, Tabitha Laffernis, who is our newly appointed ambassador and sponsorship coordinator, and Imelda Wilde, who has a keen interest in working with our newly formed group of professional stakeholders.

We have also been fortunate to have received financial support, in the form of one-off and regular donations from people affected by chronic UTI, small grants from charitable organisations, and an ongoing and much appreciated business sponsorship arrangement with Sarah Willmott of Feel Better Box.

While we or our loved ones are now all at various stages of recovery—having found doctors who are willing to listen and provide effective treatment—we are aware that many thousands of Australians are not so lucky. It is imperative that we capitalise on the recent attention given to chronic UTI in the media, and by some high-profile medical professionals, to insist on and push for change.

The confronting reality is that without Chronic UTI Australia, there is no patient voice. But our future success depends heavily on funding and volunteer help from our patient community and others who realise the importance of achieving our goals.

We continue to look at funding opportunities to allow us to further the very important work of the organisation. We are always grateful for donations from the community, however small, but we cannot rely solely on the generosity of people whose own finances are impacted by having a chronic and poorly understood disease.

We are looking at ways to encourage more voluntary involvement from people in our community. Rather than simply asking for ‘help’ we have decided to advertise specific volunteer opportunities so that people know what they will be asked to do and can decide whether the role suits their skills and availability.  We will be advertising specific roles in coming months. Please look out for these on the Facebook page and here on the Chronic UTI Australia website.

We would welcome contact from anyone in our community who can assist financially with a donation or sponsorship, through volunteer involvement, or who can connect us with potential supporters of our cause. Please feel free to email us at contact@chronicutiaustralia.org.au.

Deirdre Pinto 
Co-founder / Chairperson
Chronic UTI Australia Inc.

 

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