Many children are presenting to clinicians with symptoms of chronic UTI, unfortunately there has been no updated training in this disease meaning that sufferers struggle to get a diagnosis and referral. 

Many families with children who suffer struggle to be taken seriously, their children test negative for infection but clearly have symptoms that are obvious to the family of the child, but not always to medical professionals who have no training in chronic UTI. The tests are now known to be unable to detect chronic UTI. 

Continuous negative tests paired with desperately concerned parents, is a combination that unfortunately often results in families being referred to Health Visitors and Social Services, by the clinicians they’ve gone to for help. None of these people understand chronic UTI and this pushes families and the child further away from accessing the vital specialist care required. Many then turn to America for treatment with private specialists, but this is not affordable for all families. 

Chronic UTIs are not rare, they’re just rarely diagnosed. Adult sufferers are generally only diagnosed when they eventually reach the few UK specialists we have, and they suffer for an average of six years before they get an accurate diagnosis, this is an unbearably long wait.

Specialists estimate that there are over 1.6 million UK sufferers of chronic lower urinary tract symptoms and despite this prevalence, there is a significant gap in the wider healthcare system's response to this debilitating disease.

Information was only added to the NHS website very recently acknowledging chronic UTI as an infection that is different to acute or recurrent UTI and requires different, longer-term treatment. A chronic UTI is a long-term embedded infection. 

We call upon the NHS and NICE to create a clear pathway for those suffering from chronic UTI symptoms to be promptly referred to a chronic UTI specialist. Currently the pathway for adults is far too difficult and lengthy, and there is no pathway at all for children to access a specialist and receive a diagnosis and treatment.

Sufferers of chronic UTI deserve better.

Sign this petition today if you believe in prompt and specialised care for all chronic UTI sufferers, adults and children alike.

References: 

Campaign group and charity  - 

https://cutic.co.uk/​

https://bladderhealthuk.org/page/index/294

UK medical study - 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6394536/

One and only adult NHS chronic UTI specialist clinic London - 

https://www.whittington.nhs.uk/default.asp?c=42456

New research into chronic embedded UTI - 

https://www.ucl.ac.uk/news/2023/nov/artificial-bladders-shine-light-bugs-cause-urinary-tract-infections

Article about child sufferers - 

https://inews.co.uk/news/chronic-uti-children-denied-treatment-losing-childhood-urinary-tract-infection-1540249

Article regarding adult sufferers - 

https://www.bbc.co.uk/news/uk-wales-66819073.amp

NHS - 

https://www.nhs.uk/conditions/urinary-tract-infections-utis/

Local council minutes - families of child sufferers try to force their way in for specialist treatment for their child using solicitors and MPs -

https://www.minutes.haringey.gov.uk/documents/s126719/JHOSC%20Briefing%20Paper%20-%20LUTS%20Update.pdf

Diagrams explaining a chronic and embedded long-term UTI - 

https://bladderhealthuk.org/uploads/Conditions/00%20Chronic%20urinary%20infection%20Picture%20Commentary%20August%202018%20(1).pdf

University College London patient story -

https://www.ucl.ac.uk/giving/case-studies/2023/jul/how-one-patient-doctor-journey-gives-hope-millions-who-suffer-utis

Chronic UTI Australia - Patient experience survey including UK data - 

https://www.chronicutiaustralia.org.au/survey/