Abstract

Urinary tract infections (UTIs) are commonly managed within primary, community, and urology services, but recurrent and persistent symptoms can present significant challenges for patients and clinicians. Many individuals report uncertainty, fragmented care, and distress, particularly when symptoms persist despite treatment. A nurse-led, public-facing UTI information service was set up by the Urology Foundation in 2024. This article describes and reflects on the first year of the service and considers its relevance for nursing practice.
 

Methods 

Service activity and anonymised themes from contacts received between May 2024 and May 2025 were reviewed descriptively.
 

Results

Analysis revealed consistent themes, including uncertainty around diagnosis and treatment, the emotional impact of persistent symptoms, perceived limits to management options, and difficulties navigating escalation pathways. Callers valued empathetic listening, clear information, and help in understanding investigations and next steps.
 

Discussion

Findings highlight the complexity of recurrent and persistent UTI symptoms and the central role nurses play in assessment, communication, and advocacy. Nurse-led information and support services may complement existing care by amplifying patient voices and supporting clarity, confidence, and continuity.

Introduction

Urinary tract infections (UTIs) are among the most common bacterial infections encountered in clinical practice, with significant impact on individuals and health systems. Around 50–60% of women will experience a UTI in their lifetime (Foxman, 2014; National Institute for Health and Care Excellence, 2018), and approximately 30% will have a recurrence within 6 months (Anger et al, 2022). For some, symptoms persist beyond repeated treatment, with a subset experiencing long-term or chronic symptoms that are not well captured in routine data. Although UTIs are often viewed as minor or self-limiting, recurrent or persistent symptoms can be highly distressing and have a profound impact on quality of life (Newlands et al, 2024).

For nurses working across primary, community, urology, and continence care, UTIs are a frequent yet often challenging presentation. Inconsistent urine test results that do not always correlate with patients’ symptoms, concerns around antimicrobial resistance, and variable access to investigations and specialist services can complicate clinical decision making. Nurses are often required to balance guideline-based care with patient-reported symptoms within time-limited consultations, especially when symptoms persist despite treatment.

Growing awareness of recurrent and chronic UTIs has been driven by increased visibility of the patient voice. This has been achieved through social media campaigns, patient advocacy and collaborative research initiatives. Organisations such as the Urology Foundation have contributed to UTI education and awareness, alongside national antimicrobial stewardship led by AMR Action UK, and the James Lind Alliance priority setting partnership for recurrent and chronic UTI. Patient-led groups such as CUTIC have highlighted ongoing challenges in recognition, research and care for those with chronic UTI symptoms. The James Lind Alliance priority setting project – a collaboration between patients, carers, clinicians and charities – is due to publish its findings in February or March 2026 (James Lind Alliance, 2026).

Rising levels of antimicrobial resistance together with the ongoing challenges in accurately diagnosing and treating recurrent or persistent symptoms, particularly when patient symptoms do not align with culture results, further underline the need for new, supportive approaches (National Institute for Health and Care Research, 2024; European Association of Urology, 2025).

In April 2024, the Urology Foundation launched the UK’s first nurse-led, public-facing UTI information service to provide evidence-informed guidance, empathetic listening, and signposting for anyone affected by UTI symptoms. Within its first year, the service has supported over 380 individual contacts. This article explores key insights from the service, its relevance for nursing practice, and its potential contribution to improving care for people with recurrent and persistent UTI symptoms.
 

The UTI Information Service: rationale, scope, and delivery

The UTI Information Service was established in response to increasing reports from patients and clinicians of unmet need in relation to recurrent and persistent UTI symptoms. Despite frequent contact with healthcare services, many individuals describe uncertainty around diagnosis, treatment options, and when or how to seek further help.

Developed and delivered by a specialist urology nurse, the service provides free, evidence-informed information and support to anyone affected by UTI symptoms, including patients, carers, and healthcare professionals. In addition to verbal support, callers were routinely signposted to written and digital resources to reinforce key messages, support self-management, and aid preparation for clinical consultations.
Access is via self-referral, primarily by telephone and email. The service operates 2 days per week with live telephone access available during set hours (10–12noon). Email enquiries and call back requests are managed outside these hours with email responses provided within three working days. The service does not provide diagnosis or prescribe treatment; rather, it supports understanding of symptoms, explains current approaches to investigation and management, and signposts individuals to appropriate services or sources of further support.

A core feature of the service is empathetic, non-judgmental listening. As well as physical symptoms many contacts relate to distress, frustration, and loss of confidence following repeated infections or ongoing symptoms. The service offers time and space to explore symptom history, previous investigations, and treatment experiences, helping individuals make sense of complex or contradictory information.

Where appropriate, callers are supported to prepare for consultations, including understanding what questions to ask, what investigations may be helpful, and when escalation or referral should be considered. This approach aligns with national guidance promoting shared decision making and partnership in clinical care (National Institute for Health and Care Excellence, 2023).

Clear safety netting is provided, with those with urgent symptoms redirected to general practice, out-of-hours services, or emergency care as needed. The service operates within established governance and safeguarding frameworks and, as a member of the Helplines Partnership, adheres to recognised standards for safe and ethical helpline practice (Helplines Partnership, 2024).

Overview of service activity during the first year 

During its first year of operation (May 2024–May 2025) the UTI Information Service received 420 enquiries via telephone and email. The service operated two days per week, with live helpline calls taken during the designated hours as detailed above. Additional enquiries were managed via email and/ or call- backs depending upon enquirer preference. Of these 71% were via telephone and 29% via email. Most contacts were initiated by people experiencing recurrent or persistent UTI symptoms, often following multiple episodes of infection or ongoing symptoms despite previous treatment. Of the 120 emails received, 17% were from healthcare professionals seeking clarification or additional information to support patient care. Figure 1 shows the most common themes of contacts with the UTI Information Service.

While the service is open to all genders, most contacts were from women (85%); however, men, particularly older men and catheter users, made up 15% of contacts (Figure 2).

Repeat contact was noted among individuals with longstanding symptoms or complex histories. Follow-up contacts most commonly related to changes in symptoms, outcomes of investigations, or uncertainty following clinical review.
 

What we heard: themes from the first year

During its first year of operation, the UTI Information Service received a steady stream of contacts via telephone and email. As awareness of the service spread through word of mouth, written coverage, and social media, consistent patterns of enquiry emerged offering insight into the challenges faced by people living with recurrent or persistent UTI symptoms.

Informal feedback was shared spontaneously by callers during or following contact with the service, including in follow-up emails expressing thanks or reflecting on their experience. This was used to inform reflective learning rather than formal evaluation. Many have become involved in the Patient and Public Involvement and Engagement Programme with the Urology Foundation and have contributed stories of their own lived experience to be shared on media platforms, to further raise awareness. 

Figure 1. Most common themes of contacts with the UTI Information Service (May 2024–May 2025). AMR = antimicrobial resistance; CAUTI = catheter-associated urinary tract infection; UTI = urinary tract infection.

Figure 2. Gender distribution of contacts with the UTI Information Service (May 2024–May 2025).

The main themes covered in the feedback included: 

• Difficulty accessing timely GP appointments or urine testing
• Uncertainty about recurrence vs incomplete resolution of UTI
• Concerns about the efficacy of short courses of antibiotics in those with recurrent UTI
• Persistent symptoms despite ‘normal’ culture
• Variation in management approaches and prescribing decisions
• UTI prevention including antibiotic prophylaxis, non-antibiotic options and vaginal oestrogen
• Perceived limited treatment options in recurrent UTI
• Emotional distress, anxiety, and feeling disbelieved
• Need for greater clarity, reassurance and time
• Unclear pathways for those with complex urinary presentations, including catheter users.

Many enquirers described difficulty accessing timely GP appointments or urine testing, alongside confusion about test results. Some reported receiving repeated courses of antibiotics, with uncertainty about whether symptoms reflected incomplete resolution of infection or a new presentation. Others described being prescribed short courses of antibiotics which, based on previous experience, they felt were unlikely to resolve symptoms, contributing to frustration and repeated re-presentation. 

Some reported being told their tests were ‘normal’ despite having persistent symptoms, leaving them unsure about next steps. Queries about preventative medication, including daily antibiotic prophylaxis and non-antibiotic options, were also common, highlighting uncertainty about available approaches, individual choice and access to treatment.

Variation in management approaches was also commonly described. Some enquirers reported being treated based on symptoms alone, while others were advised to wait for urine results before treatment decisions were made. Some individuals described undergoing investigations to exclude serious pathology, including cystoscopy, yet reported limited clarity about ongoing symptom management or follow up when findings were normal and symptoms persisted. 

Many described a sense of there being limited treatment options, particularly where symptoms recurred, with management perceived as constrained by existing guidance or concerns about repeated antibiotic use.

A small number of callers reflected on positive but challenging interactions with engaged GPs, describing shared frustration with diagnostic uncertainty, limited options, and restricted access to specialist advice.

The emotional impact of recurrent or unresolved symptoms was a prominent theme. Callers frequently described pain, distress, frustration, anxiety, and isolation, particularly where symptoms had persisted over months or years. Several women reported feeling disbelieved or implicitly blamed for their symptoms, especially when dipstick testing or urine cultures were negative.

Across many contacts, a central need was for clarity, reassurance, and time. Callers valued the opportunity to talk through symptom history, ask questions, and gain a clearer understanding of investigations, treatment options, and prevention strategies. Compassionate listening and clear explanations were consistently described as helpful in restoring confidence.

For many individuals, contact with the service supported greater confidence and self-advocacy. With improved understanding, callers described feeling better equipped to discuss concerns with their GP, request further investigations, or seek referral where appropriate.

Some of the most striking insights came from people living with long-term or complex urinary symptoms, including women experiencing menopausal bladder changes, catheter users, younger women with recurrent UTI, and men with persistent bladder symptoms suggestive of chronic inflammation or infection. These accounts were notable not because symptoms were unusual, but because many individuals had already undergone repeated treatment or investigation, including exclusion of serious pathology, yet described a sense of being ‘passed between services’ or ‘falling through the gaps’, with no clear pathway for ongoing assessment, review, or support once initial management options had been exhausted.

Overall, these themes highlight a tension between the clinical framing of UTIs as straightforward infections and the lived experience of those affected, reinforcing the value of time, empathy, and accessible information in supporting people with persistent symptoms. In response to the needs identified through the enquiries in the first year, additional written and digital resources were developed to include guidance on managing GP consultations, understanding urine testing and coping with recurrent UTI (The Urology Foundation, 2024).

Implications for nursing practice

These findings highlight several practical considerations for nurses working across community, primary care, urology, and continence settings. Table 1 outlines common issues raised by callers to the UTI Information Service and areas where nursing assessment, communication, and support may help bridge gaps between guideline-based care and patient experience. These are:

• Adopt a symptom-led approach alongside test results
• Support good quality urine sampling and interpretation
• Troubleshoot potential lifestyle factors using an individualised approach
• Maintain awareness of hormonal influences across the life course
• Consider underlying and contributing factors
• Consider other bladder conditions
• Support clarity and shared understanding
• Encourage self-advocacy.

In developing the UTI service it became clear at the outset that escalation prompts were essential when discussing symptoms remotely. Drawing on that experience, Box 1 summarises key red flag features that should trigger urgent review in community practice.
 

Conclusions

The first year of the UTI Information Service has highlighted a disconnect between how UTIs are often framed within healthcare systems and how they are experienced by those living with recurrent or persistent symptoms. While clinical guidance provides a framework for care, many individuals continue to experience uncertainty, fragmented pathways, and distress.

This nurse-led, public-facing service demonstrates the value of accessible, evidence-informed information, empathetic listening, and clear signposting in supporting both patients and clinicians. By amplifying patient voices and translating lived experience into practical learning, the service offers a model for how nurse-led information and support services can complement existing care and support greater clarity, confidence, and empowerment for people affected by UTIs.
 
A poster outlining these findings won the Sarah Henderson best poster award at the British Association of Urological Nurses conference 2025.

Table 1. Implications for nursing practice: key points from the first year

Adopt a symptom-led approach alongside test results	Persistent or recurrent urinary tract infection (UTI) symptoms may occur despite negative dipstick results or inconclusive urine cultures. Exploring symptom patterns, previous treatments, and impact over time can support clinical judgement
Support good quality urine sampling and interpretation	Education on appropriate urine sample collection, including timing and technique, alongside discussion of the limitations of dipstick testing, remains important
Troubleshoot potential lifestyle factors using an individualised approach	Fluid intake, bladder habits, bowel health, sexual activity, and use of bladder irritants may influence symptoms for some individuals and can be explored in a person-centred way
Maintain awareness of hormonal influences across the life course	Perimenopause and menopause are associated with urogenital changes, notably vaginal dryness related to declining oestrogen levels, which may increase susceptibility to UTI symptoms, alongside other bladder symptoms such as discomfort, overactivity and urinary leakage
Consider underlying and contributing factors	Recurrent or persistent symptoms may be influenced by incomplete bladder emptying, pelvic organ prolapse, catheter use, bladder sensitivity, or pelvic health considerations and may warrant review or referral to specialist services
Consider other bladder conditions	Where symptoms persist despite treatment, alternative co-existing conditions such as painful bladder syndrome or interstitial cystitis should be considered, particularly when tests are repeatedly negative
Support clarity and shared understanding	Clear explanations about investigations, treatment options, prevention strategies, and potential next steps helps reduce anxiety and improve trust, including discussion of the current evidence base for over-the-counter preparations
Encourage self-advocacy	Supporting individuals to recognise those symptoms requiring urgent review and articulate concerns clearly to healthcare professionals may lead to improved self-management and timely escalation when appropriate

Box 1. Red flags requiring urgent review

If any of the following features are identified, ensure urgent medical review in line with local pathways. Systemic features require emergency assessment. Do not delay escalation while waiting for urine results. Systemic symptoms or clinical deterioration. Be sepsis aware – urgent assessment required (National Institute for Health and Care Excellence, 2025a)  Visible haematuria – consider referral in line with National Institute for Health and Care Excellence (2025b) guidance  Persistent or unexplained urinary symptoms in patients aged 60 years or older – consider further investigation in line with National Institute for Health and Care Excellence (2025b) guidance  Persistent or worsening symptoms despite treatment Recurrent symptomatic UTI in men or catheter users New or concerning symptoms in older or vulnerable adults.