{"id":129535,"date":"2025-05-25T02:27:50","date_gmt":"2025-05-25T02:27:50","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/129535\/"},"modified":"2025-05-25T02:27:50","modified_gmt":"2025-05-25T02:27:50","slug":"the-women-behind-the-fight-for-chronic-uti-recognition-after-years-of-suffering","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/129535\/","title":{"rendered":"The women behind the fight for chronic UTI recognition after years of suffering"},"content":{"rendered":"

For years, countless women have been suffering from daily agonising bladder pain.<\/a><\/p>\n

Patients\u2019 lives have been ruined by a condition they thought was nameless, doctors have misunderstood their symptoms, and scientists have been struggling to understand the hidden health crisis.<\/p>\n

This all changed with Professor James Malone-Lee, a pioneering doctor behind the diagnosis and treatment of chronic urinary tract infections<\/a> (UTI).<\/p>\n

After his death in 2022, his legacy can be seen in a limited number of clinics now treating the condition, a charity and a Facebook patient support group with 27,000 members, who have been lobbying the NHS and Government for change.\u00a0\u00a0<\/a><\/p>\n

Finally, MPs will be gathering in Westminster Hall on Wednesday morning for a landmark Parliamentary debate on chronic UTI.<\/p>\n

Here, we\u2019ll take a look at the journey so far and some of the key figures behind the long fight for better treatment and research into chronic UTI.<\/p>\n

The patients: \u2018We\u2019re still trapped in pain\u2019<\/p>\n

Despite huge steps forward, including new treatment methods <\/a>and the recognition of the condition\u2019s existence by the UK health authorities, many sufferers are still stuck in pain.<\/p>\n

Vicky Matthews, who has been suffering for 24 years and was finally diagnosed in 2019, said patients are fighting an \u201cuneducated\u201d healthcare system that is not set up to support them.<\/p>\n

\u201cI\u2019m calling on our Government to recognise the importance of the debate and use it as a catalyst for change,\u201d said Ms Matthews, 45, from the Wirral. \u201cBecause thousands of women are trapped in pain and trapped in the system that denies their illness.\u201d<\/p>\n

\"\"(Left to right) Caroline Sampson, 61, Vicky Matthews, 45, and Phoebe Price, 24, all suffer from a chronic UTI <\/p>\n

Sufferers have clubbed together to lobby the Government, including Phoebe Price, 24, from South London, and Sarah Heaton, in her thirties, from West Yorkshire. <\/p>\n

Ms Price wrote to her MP, the Liberal Democrat Luke Taylor, who is leading Wednesday\u2019s debate, in November 2024 to highlight the condition.<\/p>\n

She said that securing a parliamentary debate was \u201ca huge step forward\u201d for patients and their relatives across the UK \u201cwhose lives have been devastated by this condition\u201d.<\/p>\n

\u201cIt\u2019s also a testament to the strength of our community, who have campaigned relentlessly for change despite immense suffering,\u201d she said.<\/p>\n

The debate gives the community \u201chope\u201d, which has been in \u201cshort supply\u201d after some members have tragically taken their own lives, Ms Heaton said.<\/p>\n

\u201cIt finally puts our condition on the map, and it finally validates our suffering.\u201d<\/p>\n

For patients who cannot tolerate the main form of chronic UTI treatment of long-term, narrow-spectrum antibiotics, everything is riding on further research into the disease.<\/p>\n

\u201cIt is absolutely soul-destroying to live with a chronic UTI, and to no longer tolerate antibiotics due to all the dreadful side effects,\u201d said Caroline Sampson, 61, from Hertfordshire. \u201cThe infection has completely derailed my life in all possible ways.\u201d<\/p>\n

The doctors and scientists: \u2018We were ridiculed\u2019<\/p>\n

Doctors and scientists have been researching and treating chronic UTIs for nearly 20 years, long before it was recognised as a condition and respected in the scientific community. <\/p>\n

Leading NHS urogynaecologist Miss Rajvinder Khasriya, who started doing a PhD with Prof Malone-Lee in 2007, said her team was \u201cfrequently ridiculed and attacked in conferences\u201d when they first started discussing the condition. <\/p>\n

Now, she runs the Lower Urinary Tract Symptoms (Luts) Service at the Whittington Hospital, which is the only dedicated NHS chronic UTI treatment centre in the country with a waiting list stretching over a year. <\/a><\/p>\n

She described the debate as \u201ca really important step forward in changing this situation by bringing focus to it, hopefully from the health department\u201d. <\/p>\n

Several other doctors have been integral to the fight, including Dr Catriona Anderson, who runs a specialist clinic in Staffordshire and Mr Sachin Malde, a consultant urological surgeon based at Guy\u2019s and St Thomas\u2019 Hospital in London. <\/p>\n

Dr Anderson said that although significant progress has been made, we are \u201cstill not meeting ideal diagnostic and treatment aims in this patient population who are long-suffering\u201d. <\/p>\n

\"\"(Left to right) Dr Catriona Anderson and Professor Jenny Rohn have made huge contributions to the field <\/p>\n

Scientists have also made huge contributions to progress with research into why chronic UTI happens, new diagnostic methods and more effective treatment options. <\/p>\n

Professor Jenny Rohn, a microbiologist specialising in UTI at University College London (UCL), said the Parliamentary debate is \u201clong overdue\u201d after \u201cmany years of people fighting to get any recognition for this problem\u201d. <\/p>\n

She started studying chronic UTI in 2011 when research was \u201cfrankly non-existent\u201d and has since published peer-reviewed research into how bacteria hide inside the bladder lining<\/a> and cause a chronic infection. <\/p>\n

The campaigners: \u2018Everyone deserves a pain-free life\u2019\u00a0<\/p>\n

Patients who have been severely affected by chronic UTI have been fighting tirelessly to advocate for life-changing chronic UTI. <\/p>\n

So far, the NHS has officially recognised that the condition exists<\/a>, adding to its online information for patients, and the National Institute for Health and Care Excellence (Nice) has recognised it as unique from recurrent and acute infections. <\/a><\/p>\n

But Nice has still not agreed on specific guidelines for diagnosis or treatment, meaning it\u2019s \u201calmost impossible for patients to get a correct diagnosis or to be referred by their GP for effective treatment\u201d, according to the charity CUTIC (Chronic Urinary Tract Campaign). <\/p>\n

\"\"(Left to right) Campaigner Joanne McKinlay and the co-directors of CUTIC, Carolyn Andrew and Alison Pearce<\/p>\n

\u201cThere is no training in chronic UTI to newly qualified doctors, and many patients are living their lives in agony and despair,\u201d charity co-directors Carolyn Andrew and Alison Pearce added.<\/p>\n

Sufferer-turned-campaigner, Joanne McKinlay, has also dedicated her life to raising awareness for chronic UTI, setting a Facebook support group for people who have been misdiagnosed and gaslit by the medical profession.<\/p>\n

\u201cOur community is incredibly strong and supportive, and I am immensely proud of everyone who has contributed to this movement despite battling this condition themselves,\u201d Ms McKinlay said.<\/p>\n

\u201cEvery person deserves a life free from pain and with improved first-line care, this vision is within reach,\u201d she added.<\/p>\n

The politicians: \u2018Healthcare is failing women\u2019\u00a0<\/p>\n

Sutton and Cheam MP Taylor said that the nation\u2019s healthcare system is a \u201cstory of failure\u201d for chronic UTI sufferers.<\/p>\n

The last time chronic UTI was debated in Parliament was an adjournment debate in 2016 led by Labour MP Catherine West.<\/p>\n

Taylor said the debate is set to call for practitioners to be educated about chronic UTI and for \u201cproper funding into research around future treatments\u201d.<\/p>\n

\u201cThat\u2019s how we can give hope to these brave sufferers,\u201d he added.<\/p>\n

The Government said its efforts to cut the NHS waiting list and deliver extra appointments will benefit sufferers of conditions like chronic UTIs.<\/p>\n

It is also funding, through the National Institute for Health and Care Research, further research \u201cto improve the diagnosis and treatment of urinary tract infections (UTIs)\u201d.<\/p>\n

A spokesperson said: \u201cLiving with a chronic UTI can be extremely debilitating, and patients should receive compassionate care and support from the NHS.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"For years, countless women have been suffering from daily agonising bladder pain. Patients\u2019 lives have been ruined by…\n","protected":false},"author":2,"featured_media":129536,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4316],"tags":[57111,105,4348,211,16,15,6795],"class_list":{"0":"post-129535","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-healthcare","8":"tag-chronic-uti","9":"tag-health","10":"tag-healthcare","11":"tag-nhs","12":"tag-uk","13":"tag-united-kingdom","14":"tag-womens-health"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/114566116635989840","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/129535","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=129535"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/129535\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/129536"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=129535"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=129535"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=129535"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}