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CUTIC is a not-for-profit organisation formed by a small group of expert patients in 2016.  We work closely with clinicians, researchers and other professionals to achieve the following aims:

  • Raise awareness about ongoing, chronic urinary tract infections
  • Challenge current tests which fail to diagnose a significant number of UTIs
  • Gain official recognition and formal treatment guidelines for chronic UTI
  • Enable swift diagnosis of chronic UTI in order to avoid any misdiagnoses of interstitial cystitis, painful bladder syndrome and urethral syndrome
  • Ensure effective specialist treatment for chronic UTI is available to all

 

What CUTIC is doing to help bring about lasting change:

  • Raising the profile of chronic UTI to gain official recognition of the condition
  • Helping chronic UTI sufferers access better treatment
  • Highlighting research on scientific advances in understanding chronic UTI
  • Campaigning for the creation of guidelines for chronic UTI to avoid misdiagnoses of IC/BPS/US
  • Identifying and promoting research into specialist treatments for chronic UTI
  • Supporting the work of centres working on research into chronic UTI
  • Campaigning for a national system of specialist NHS treatment centres.

Bladder infections wreck lives and can potentially lead to sepsis and loss of life. Current tests and treatments are failing sufferers – this means no effective treatment is provided.

CUTIC believes that chronic UTI sufferers deserve better testing and effective treatment.  The MSU culture misses up to 90% of patients with a chronic Urinary tract infection and the urine dipstick misses 60% of chronic urinary tract infections.1,2 

  1. Sathiananthamoorthy, S., Malone-Lee, J., Gill, K., Tymon, A., Nguyen, T.K., Gurung, S., Collins, L., Kupelian, A. S., Swamy, S., Khasriya, R., Spratt, D.A., Rohn, J. (2019). Reassessment of routine midstream culture in
  2. Gill, K., Kang, R., Sathiananthamoorthy, S., Khasriya, R., Malone-Lee, J. (2018). A blinded observational cohort study of the microbiological

  The MSU culture misses 50%1,2,3 of acute infections. This often leads to patients being misdiagnosed.

  1. Foxman B. Epidemiology of urinary tract infections: incidence, morbidity, and economic costs. Am J Med. 2002; 113:5–11S
  2. Sathiananthamoorthy, S., et al., Reassessment of Routine Midstream Culture in Diagnosis of Urinary Tract Infection. J Clin Microbiol, 2018
    Gill, K., et al., A Blinded Observational Chort Study of the Microbiological Ecology Associated with Pyuria and Overactive Bladder Symptoms. Int Urogynecol J, 2018
  3. Foxman B. The epidemiology of urinary tract infection. Nature reviews Urology. 2010;7(12):653-660.

 

Gaining medical recognition and treatment guidelines for chronic UTI

In the UK it is estimated up to 1.7 million women suffer from chronic urinary tract infections, we also know that many men and children also suffer.

The official health bodies that produce treatment guidelines (National Institute for Health and Care Excellence, (NICE) in England, and The Scottish Intercollegiate Guidelines Network (SIGN) in Scotland provide guidelines for acute and recurrent UTIs but neither have yet produced specific guidelines for chronic UTI.

CUTIC worked with NHS Digital and other medical professionals on guidance for patients published in February 2022.  This now states:

‘In some people, antibiotics do not work or urine tests do not pick up an infection, even though you have UTI symptoms.

This may mean you have a long-term (chronic) UTI that is not picked up by current urine tests. Ask the GP for a referral to a specialist for further tests and treatments.

Long-term UTIs are linked to an increased risk of bladder cancer in people aged 60 and over.’ https://www.nhs.uk/conditions/urinary-tract-infections-utis/

Despite this, there is still no agreed method to successfully diagnose or treat ongoing, chronic UTI.

Current guidelines for diagnosing any kind of UTI relies on positive dipstick tests and laboratory urine cultures on Midstream Urine samples (MSUs) which have been proven to miss over half of infections. Even back in the 1950s, Edward Kass warned that his tests should not be used in isolation and should always be coupled with patient symptoms which should always be used as part of any diagnosis.

NICE guidelines in England (SIGN guidelines in Scotland) suggest that where UTI keeps coming back, longer, low-dose courses of antibiotics can be used, but only if dipstick tests and MSUs are positive. Low-dose (prophylactic) antibiotics are sometimes prescribed but these are not usually effective and can lead to antibiotic resistance.

Clinicians urgently require specific guidelines for ongoing, chronic UTIs. GPs are currently only able to prescribe short courses of antibiotics of between 3 and 10 days. Longer courses can only usually be prescribed by a urologist or specialist.  Many of these do not recognise chronic UTI, nor do they know how to treat it.

 

CUTIC demands effective treatment for chronic UTI to be available to all

There are not enough specialists currently treating chronic UTI and those who do are extremely booked up with lengthy waiting lists.

Chronic UTI can be tackled successfully with various treatments, but this requires specialist care and can be lengthy. More research is needed into better treatment for sufferers.

Details of UK specialists can be found on a different website – chronicutiinfo.com

CUTIC does not endorse any specialists or treatments and recommends that you carry out your own due diligence.