Chronic UTI recognition in UK will help Australian campaign

02 Feb Chronic UTI recognition in UK will help Australian campaign

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In 2023 England’s National Health Service (NHS) responded to public pressure by finally recognising chronic urinary tract infection (UTI) as a distinct condition requiring specialist diagnosis and treatment. The development could pave the way for patient advocates in Australia and other countries who are campaigning their own authorities for major improvements to UTI guidelines.

British patient campaigner, Leah Herridge became involved in lobbying the NHS after developing a UTI in 2019 that did not go away.  After several failed treatments, she turned to the NHS website for help but did not find it.

Despite having a well-established and busy NHS clinic specialising in complex chronic and recurrent UTI clinic based at the Whittington Hospital, there was no information on the NHS UTI webpages about persistent UTI or referral pathways for patients. Instead, Leah’s search led her to information about interstitial cystitis (IC) – a urinary syndrome with no known cause and no cure. This is when fear and anxiety set in.

Even after finding a urologist who diagnosed her chronic UTI, Leah could not shake the initial fear that was trigged when searching for answers to explain her persistent UTI symptoms.  She dreaded the possibility of having an incurable bladder condition and suffering painful UTI symptoms for the rest of her life.

Leah joined an online community and met countless women with chronic UTI who had been misdiagnosed with bladder syndromes (such as IC and ‘Painful Bladder Syndrome’) and left to endure years of inappropriate treatments and medical neglect. Hearing repeated stories of struggles in finding accurate, up-to-date information and access to specialists trained in diagnosing and treating chronic UTI, motivated Leah to lobby the NHS for change.

“I knew I needed to get more accurate and helpful information on the NHS website,” she said.  “NICE (National Institute for Health and Care Excellence) at the time hadn’t recognised chronic UTI—this followed the website changes.  At first there was lots of push back as the website leads only wanted information recognised by NICE. We persisted with providing details on the science and evidence which was available.”

 

Patient activism led to changes in the UK

Leah led the patient community in a campaign with hundreds of patients, clinicians and two leading UK advocacy groups writing to the NHS demanding they review their online information based on the most current scientific evidence base.

“They eventually updated the IC page, but it took another round of patient letters and sustained pressure to get the UTI pages updated. The webpages now flag the problems with the diagnostic tests and alerts patients to the possibility of chronic UTI.

“They have agreed to reference the UK-based NHS chronic UTI clinic (LUTS service). However, we are still waiting for the hospital to agree this. Their concern is that they already have very long waiting lists,” Leah said.

Leah says having chronic UTI properly recognised by the NHS is a major step forward in the UK and opens the doors for advocates in other countries to push their relevant authorities to provide accurate information about chronic UTI and the problems with ‘IC’ and similar diagnoses.

 

Recognition of chronic UTI in Australia

Chronic UTI Australia is leading the charge here in Australia. The organisation was established in 2018 to advocate for chronic UTI patients in Australia and campaign decision making authorities to recognise chronic UTI and provide improved guidelines for UTI diagnosis and treatment.

Chronic UTI Australia representative Andrea Sherwin says the NHS public recognition of chronic UTI is the first major sign of progress that could lead to wider acceptance of the limitations of UTI testing, and acceptance that chronic UTI requires specific diagnostic and treatment protocols not covered by existing guidelines for acute UTI.

“The NHS is held in high regard internationally. Many countries around the world source, reference and follow valuable health information from the NHS, including diagnostic and treatment guidelines.

“NHS-published information on chronic UTI will make campaigning for better UTI testing and treatment much easier in other countries,” she said.

 

More work is needed to bring UTI diagnosis and treatment into the 21st century

Leah says there is still much to do in the UK but right now she is focused on navigating some major life changes on the domestic front with twins due mid-year.

“We still need GPs and primary care to be updated on the recognition of chronic UTI and understand how they can support their patients. They need to be aware that IC is flawed and problematic diagnosis—with diagnosis based on exclusion using tests which are not fit for purpose.

“We need far greater NHS capacity to support the growing number of women with chronic UTI and more than one NHS clinic in the country.  We need pharmacies to properly understand the pitfalls with dipstick and cultures, particularly as they are now starting to prescribe for ‘noncomplex UTIs in women’. There is never an uncomplicated UTI, and they need to understand the ramifications of failing to treat UTIs properly and how this can destroy lives.

“We need better testing and treatment options, and we need NICE to accept the link between exceptionally short three-day antibiotic courses for UTI and the rapid rise in recurrent and chronic UTI.”

The issues Leah identifies are all pertinent to Australia, which currently has no specialist treatment clinic for chronic UTI.  Australian advocates are positive change will happen here too.

“In our advocacy work we are already noticing changes in attitude towards accepting chronic UTI as a legitimate condition that requires specialised treatment not covered by current guidelines for acute UTI,” Andrea said.

“In recent months we have met with medical researchers and representatives from quite a few organisations, and we think the tide might be finally turning.  We are excited about things to come.”

 

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