NHS updates official advice on Chronic UTI for patients after pressure from campaigners

The NHS has updated its official advice on chronic urinary tract infections (UTIs) for patients after pressure from campaigners and sufferers.

A recent update to the NHS webpage for UTIs now includes a section explaining that current tests do not always pick up chronic infections and that they are caused by bacteria embedding into the bladder lining.

It also advises patients to ask their GP to refer them to a specialist if they have been treated for a UTI that keeps coming back and acknowledges that chronic infections can have a “big impact” on a patient’s quality of life.

Campaigners have hailed this as a “huge step forward” as it means patients can point GPs and urologists towards the web page if they are concerned they have the condition, or if they have already been diagnosed and feel their illness is misunderstood.

A spokesperson from the Chronic Urinary Tract Infection Campaign (CUTIC) said the update is “vital” as it means patients will “no longer be gaslighted, misdiagnosed or prescribed inadequate treatments”.

But they added that more needs to be done to help patients get the treatment they “desperately” need, with more NHS specialist treatment clinics and a set of guidelines for diagnosis and treatment.

For many patients who develop a UTI, their experience is extremely painful but short-lived, however, for thousands of others, a one-off acute attack turns into a chronic infection that dominates their lives.

Up to 1.7 million patients in the UK are thought to be suffering from chronic lower urinary tract symptoms, according to CUTIC.

The NHS did not publicly recognise on its website that chronic urinary tract infections existed until March last year, despite having a clinic that treats the condition. Its web page for cystitis was updated to acknowledge the existence of “long-term (chronic) UTIs” as infections that are “not picked up by current tests”.

But the separate webpage on UTIs has now been updated with a section that discusses chronic UTI as a distinct condition with more tailor made advice for patients and health professionals.

It now reads: “In some people, short-term antibiotics for a UTI do not work and urine tests do not show an infection, even though you have UTI symptoms.

“This might mean you have a chronic (long-term) UTI. This can be caused by bacteria entering the lining of the bladder.

“Because urine tests do not always pick up the infection and the symptoms can be similar to other conditions, chronic UTIs can be hard to diagnose.

“Chronic UTIs are also treated with antibiotics, which you may have to take for a long time.

“Chronic UTIs can have a big impact on your quality of life. If you have been treated for a UTI but it keeps coming back, speak to your GP about chronic UTIs and ask to be referred to a specialist.”

Patient Leah Herridge has been campaigning for NHS England to recognise chronic UTI in its online advice since February 2022, after suffering from a debilitating chronic infection which began in 2019.

The NHS publicly recognised that chronic UTIs exist on its website in March 2022, updating the online advice on the cystitis web page.

But Ms Herridge and fellow sufferer Dannii Haughton reignited the campaign to ensure the NHS “followed through on their promise to have a full section on chronic UTI and not just a cursory mention”. Around 700 patients emailed NHS England asking for its website to be updated.

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Ms Herridge said she is in talks with the NHS for further edits and discussions have been positive.

“We will not stop until the condition gets the recognition, research, treatment and support it needs,” she added.

She has called for further amendments including that chronic UTI is distinguished from recurrent or acute infections as well as a note that there is only one NHS tertiary treatment centre.

But she welcomed the NHS update, saying it provides “validation” for patients who feel their symptoms have been “ignored or belittled” due to flawed diagnostic tests giving negative results.

“It’s imperative that patients not only have the chance to find information on what their symptoms might be on the NHS website, but also that they know how to get a diagnosis and what treatment options there might be,” Ms Herridge told i.

“Otherwise patients are left to suffer and have their life stolen from them while they live in pain from this debilitating condition,” she said.

Dr Catriona Anderson, who runs a specialist UTI clinic in Stoke, said the new online guidance will “aid patients in identifying their pattern of symptoms to help them find appropriate help”.

A Cutic spokesperson also welcomed the update but said “huge steps” need to be taken to ensure patients get the treatment they need.

They said: “There needs to be more NHS specialist clinics available for GPs to refer patients to. At present, there is only one NHS clinic, based in London and patients require a consultant referral to be seen there.

What is a chronic UTI?

Specialists say the infection, which often begins as an acute bout of cystitis, can occur when bacteria become embedded within the bladder wall and become difficult to treat with short courses of antibiotics.

The illness can affect women, men, children and the elderly, and can leave them bedbound, feeling suicidal, and unable to work, sleep, leave the house or socialise with their friends and family.

Symptoms can include daily bladder and pelvic pain, the constant urge to urinate, and pain or a burning sensation while peeing. Many sufferers also struggle with their mental health as they come to terms with living with the condition.

There are specialists within the UK who are treating the condition, including an NHS clinic run by the Whittington Hospital in north London.

Patients are often given a longer course of antibiotics that can sometimes last for more than a year until their infection is cleared and have fresh urine samples examined under a microscope for signs of the infection.

“Most patients have to pay to receive specialist care privately. There are too few private specialists and waiting lists are lengthy. Most patients can wait up to six years to be diagnosed and treated – this is unacceptable.”

Patients go through a complicated process to get a referral to the NHS LUTS clinic at the Whittington Hospital in north London as they can only be seen there after being assessed and referred by a urologist, rather than a GP.

The campaign group also called for the National Institute for Health and Care Excellence to produce a set of guidelines for diagnosing and treating chronic UTIs.

“At the moment, without a guideline framework, clinicians are struggling to know what to do with these patients which increases the patients’ suffering and also has costly implications for the NHS,” they told i.

A spokesperson for NHS England said: “We have recently updated the NHS website page about urinary tract infections to reflect the latest guidance from NICE. The page now includes additional information about chronic UTIs and advises patients with the condition to speak to their GP.

“We will continue to regularly review and update content on the NHS website to make sure it is accurate, easy to understand and reflects current advice.”