Thousands of children across the UK, many of them neurodivergent, may be suffering from the debilitating effects of chronic urinary tract infections, a condition medical experts warn is notoriously difficult to diagnose and treat, leaving families in despair and risking long-term health complications.
‘Trapped in her own body’: The parental fight for recognition
For Louise from St Helens, the battle began when her severely autistic, non-verbal 14-year-old daughter, Holly, developed an acute UTI in the summer of 2024. After multiple courses of antibiotics failed to resolve her pain and incontinence, a harrowing cycle of referrals and invasive testing began. Holly underwent a urodynamics test at Alder Hey Children’s Hospital, a standard procedure to assess bladder function that her mother describes as “inhumane and horrific,” during which the distressed girl tried to rip out the tubes attached to her bladder.
Louise says her daughter’s symptoms are frequently “dismissed as behaviours,” with doctors suggesting incontinence could be due to autism regression. “It feels like she’s trapped in her own body,” she said. Despite paying for a private test that suggested infection-causing bacteria might be present, Louise says clinicians have told her they have “reached the limits of the testing we are able to do within the current NHS system.”
Her experience is far from unique. Laura Holland, who leads support for children at the charity Chronic Urinary Tract Campaign (Cutic), says many parents feel they are living “in a horror film,” blamed and disbelieved while watching their child’s health deteriorate. She runs a Facebook support group with over 700 parents but believes the true number of affected children is much higher.
Kelly Birchmore from Colchester says her 14-year-old daughter has used a catheter since age 11 to try to prevent lifelong kidney damage, after a decade of hospitals and missed education. “If they had been willing to investigate further… I think she’d be catheter-free,” she said, holding back tears. “I think they would have got to the source of the problem.”
A perfect storm of diagnostic uncertainty and therapeutic dead ends
The core of the crisis lies in a profound medical challenge. Chronic UTIs are defined by bacteria becoming embedded into the bladder lining, often requiring long-term treatment. However, as a spokesperson for Alder Hey Children’s Hospital stated, diagnostic criteria for adults are “not well-defined” and there is a “dearth of evidence for the condition in children.”
Professor Vik Khullar, a consultant urogynaecologist at St Mary’s Hospital in London and a National Institute for Health and Care Excellence (NICE) advisor, points to a “fundamental lack of investigation or investment” in the condition, which can leave children with long-term kidney disease if untreated.
Diagnosing children is uniquely difficult. Nav Johal, a consultant paediatric urologist at Great Ormond Street Hospital, explains that symptoms in younger children can be non-specific—including high temperature, irritability, sickness, or wetting—and obtaining a reliable urine sample is “not always straightforward, and results can be inconclusive.” This is compounded for non-verbal autistic children who cannot articulate their pain, and for whom, research indicates, Bladder and Bowel Dysfunction is common due to sensory issues and communication difficulties.
Compounding the diagnostic problem is a major treatment gap. While some adults with diagnosed chronic UTIs can access long-term antibiotics at specialist clinics, this is not available to children in the UK due to clinical and regulatory issues. Professor Khullar identifies “barriers to children getting proper services,” with few paediatricians willing to share care with urologists who treat adults. He argues GPs need to be “freed to actually carry out good, quality local care, rather than being told that they’re not supposed to do it.”
The hospital perspective, as explained by Alder Hey, is one of caution; using antibiotics without clear evidence of infection poses “significant risks” to gut and kidney health and fuels antimicrobial resistance—a serious concern given studies show high rates of antibiotic resistance in paediatric UTIs.
There is movement within the medical community to address this. Mr Johal is working with leading chronic UTI expert Miss Rajvinder Khasriya, a consultant urogynaecologist at Whittington Health and University College Hospital London, to improve pathways for children. They aim to develop a “more integrated approach to care,” including shared care for selected patients. Miss Khasriya also leads the Bladder Infection and Immunity Group at University College London, which researches chronic UTIs.
Beyond antibiotics, the research landscape shows promise in other areas. NICE has updated guidance to recommend methenamine hippurate as an effective non-antibiotic alternative for preventing recurrent UTIs in women, following a clinical trial. Other approaches with growing scientific backing include D-Mannose, cranberry extracts, and bladder instillation therapy. In a significant development, UK regulators have also approved gepotidacin, the first new oral antibiotic for uncomplicated UTIs in nearly 30 years.
Parliamentary pressure and the search for solutions
The issue has now been raised in Parliament. Luke Taylor, the Liberal Democrat MP for Sutton and Cheam and co-chair of the All-Party Parliamentary Group (APPG) on Chronic UTI, described the experiences of families as “clearly traumatic and unacceptable.” He has called for NICE to update its treatment guidelines and questioned whether plans to redesign urogynaecology pathways under the government’s Women’s Health Strategy extend to children.
In response, Health Minister Karin Smyth did not comment on specific clinical pathways but said the work of the APPG—for which The Urology Foundation acts as secretariat—is “absolutely central to the strategy,” despite chronic UTI not being explicitly mentioned in the document.
The government points to ongoing research. A Department of Health and Social Care spokesperson said it is “funding research to improve the diagnosis and treatment of UTIs,” alongside the new antibiotic approval. NICE confirms its research recommendation from 2022 into the symptoms and signs of chronic UTI in children remains “ongoing.”
However, underlying all these challenges is a critical lack of data. Research into paediatric chronic UTI is significantly underfunded. A new database is being developed to understand why some individuals develop treatment-defying infections, aiming to challenge historical assumptions about the condition. Until that evidence base is built, as Alder Hey’s statement concluded, only with more research to properly identify the condition can “appropriate treatment then be offered.” For parents like Louise, watching their children suffer, that progress cannot come soon enough.