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Chronic UTI sufferers demand the condition is added to Women’s Health Strategy

Sufferers of chronic urinary tract infections (UTIs) have called for the debilitating condition to be prioritised in the second year of the Government’s Women’s Health Strategy.

The condition, which affects an estimated 1.6 million women in Britain according to the charity CUTIC, did not appear once in the 2022 strategy to improve women’s health in England, leaving sufferers feeling “alienated” and “despairing”.

Patients, campaigners and politicians have called for the Department for Health and Social Care (DHSC) to include chronic UTI in the second year priorities of the strategy after the first year focused on other topics including menopause and maternity. A Maternity Disparities Taskforce was established and millions of pounds was invested into the maternity NHS workforce. Meanwhile, the UK Menopause Taskforce was set up and hormone replacement therapy (HRT) – relied upon by many menopausal women – was made more affordable.

The 10-year strategy acknowledged the “male as default” approach to healthcare and commissioned research into menopause and endometriosis as well as how illnesses like cardiovascular disease and dementia affect women.

Chronic UTI sufferers have called for the same level of recognition for the debilitating condition, which can leave sufferers bedbound, feeling suicidal, and unable to work, sleep, leave the house or socialise with their friends and family.

The current strategy briefly mentions “recurrent urinary tract infections” under a list of urogynaecological conditions but there is no specific mention of how UTIs can be chronic, ongoing or long term.

Sarah Heaton, a sufferer who has battled with crippling UTIs for three decades, said seeing chronic UTIs in a Government document would give her “validation” after campaigning for Government action for years as well as “hope that they are going to take it seriously”.

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.

“It would give me hope that they are going to invest more time, effort, energy and funding into this growing epidemic,” she told i. “I really hope that we can prevent future generations from this level of agony because some people think we’re exaggerating but I can honestly say I have never ever experienced anything as painful as this.”

The English lecturer, who is in her thirties, has lived with recurrent UTIs since she was a child, but developed a chronic infection in 2020 that left her in agonising daily pain.

She is now on the road to recovery, seeking treatment at a private specialist in London, but doctors have estimated it will be another year until she is able to “feel the real difference”.

“I just want my life back,” she said, adding she has been asked to be a bridesmaid at a friend’s wedding later this year but might not be well enough. “I’m just tired of this limited existence,” she said.

A year ago, Ms Heaton contacted her MP, Kim Leadbeater, who raised the question of chronic UTIs with the health secretary at the time. Ms Leadbeater, the Labour MP for Batley and Spen in West Yorkshire, criticised the Government for failing to improve the lives of chronic UTI sufferers fast enough.

Ms Leadbeater said: “It’s a year since I pressed the Government to recognise the seriousness of chronic UTIs and I’m incredibly disappointed that ministers have still not responded.

“My constituent Sarah Heaton reflected the experience of tens of thousands of women when she told me, ‘I refuse to accept a life of agony, a life confined to the four walls of my home.’ In May last year, I was told that ‘the forthcoming Women’s Health Strategy will address a range of women’s health issues, including UTIs’, so why are we still waiting?”

She added that failing to address women’s health problems hah had an “enormous” impact on the economy because “more than one in ten women leave the workforce because of UTIs, menopause and other health-related conditions”.

The Labour MP Gill Furniss, co-chair of the All-Party Parliamentary Group on Women’s Health, said it was “disappointing” that chronic UTIs were missed out of the Women’s Health Strategy last year.

She said: “The Government must listen to the concerns of campaigners and ensures that treatment options for chronic UTI patients are addressed, in order to help rectify the disparities in healthcare that women still face.”

She welcomed the February update to guidelines by the National Institute for Health and Care Excellence (Nice) which recongised that urine testing used to diagnose an acute UTI by is flawed, advising doctors to diagnose adults under the age of 65 if they have two or more key urinary symptoms.

“However, far too many women still face outdated methods of diagnosis, or even receive a misdiagnosis,” she added.

The Labour MP Kate Osborne, who also sits on the parliamentary women’s health committee, called on the Government to prioritise women by tackling the “gender health gap” and ensuring that chronic UTIs were not “ignored by health services”.

She said: “We need a women’s health strategy that tackles the gender health gap and puts women’s health issues at the forefront. People suffering from Chronic UTI are too often overlooked, misdiagnosed and left to suffer in huge amounts of pain whilst treatment is delayed, if it comes at all.

“We must do more to ensure that women are taken seriously when they are reporting health issues. Instead our pain is too often dismissed and ignored by health professionals. This Government has proven time and time again that women are not their priority, but they must now ensure that chronic UTIs are not ignored by health services.”

In March 2022, the NHS publicly recognised that chronic UTIs exist, updating its advice for patients following pressure from campaign groups. Nice has increasingly been using the terminology over the past year, including a research question about the impact of chronic UTIs on children in its recent update to the guidelines for treating children with bladder infections.

Carolyn Andrew, director of the Chronic Urinary Tract Infection Campaign (CUTIC), said both of those small changes to publications had made a huge difference in terms of medical groups working with the charity.

She said she would be “delighted” if the second year of the Women’s Health Strategy mentioned long-term or chronic UTIs because even a brief reference would bolster the cause.

Ms Andrew said: “The NHS now specifically mentions long-term chronic UTI in its patient information. Nice is accept starting to accept long-term chronic UTI exists. We think that there’s a quite a good case for pushing this forward now.”

However, she warned that more progress needed to be made on universally recognising the condition, and on improving testing before the Government could publish a detailed strategy to tackle the condition.

“Until the condition is properly recognised, which it’s starting to be, there won’t be very much work happening on it,” she said, adding that she hoped the Women’s Health Strategy would “identify that there were a lot more women with these problems”.

Leah Herridge, a campaigner and chronic UTI sufferer, demanded that the strategy be amended this year to include more detail on recurrent UTIs, which many women experience but which can lead to a chronic infection. She called for an acknowledgement that current testing methods for acute UTIs were flawed and outdated.

The 36-year-old from London told i: “The Women’s Health Strategy was put in place precisely because of the poor care women have received for decades, with women’s health riddled with misogyny that ultimately wreaks havoc on women’s lives, and yet the strategy fails to pick up an illness that nearly all women will get in their lifetime.”

She accused the Government of dismissing UTIs as “insignificant minor health issue”.

She added: “The strategy should also acknowledge that chronic UTI exists. We now have this recognition from the NHS but the DHSC failed to include it in their strategy.”

A Department of Health and Social Care spokesperson said: “We recognise recurrent urinary tract infections (UTIs) can be distressing for many people affected, and we are supporting initiatives and research to ensure patients receive high-quality treatment and can manage the condition effectively. This includes working with partners to identify solutions to recurrent UTIs – including a recommended antibiotic treatment plan, and a new study into preventing recurrent UTIs in women.”

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