Chronic Urinary Tract Infections

Catherine West Excerpts

Friday 28th October 2016 Commons Chamber

[Catherine West (Hornsey and Wood Green) (Lab)]

I am grateful for the opportunity to open this debate on the inadequacies of the current testing regime for people suffering from chronic urinary tract infections. I am happy to have been joined by other Members, and in particular by my right hon. Friend the Member for Islington North (Jeremy Corbyn), my neighbouring Member of Parliament, who has a long track record in defending services for patients with those conditions, and has worked closely with the Whittington hospital in that regard.

This subject has been neglected for too long, although it affects far too many people. Some 33% of women are expected to suffer from a urinary tract infection before the age of 24, and one in 10 girls and one in 30 boys have a UTI by the age of 16. The issue first came to my attention through the work of Professor Malone-Lee in his lower urinary tract symptoms clinic, which is run from the Hornsey central health centre in my constituency. Many of his patients are my constituents, but many others travel from all over the country and even from abroad to seek his expert help with complex, chronic bladder conditions that have made their lives a misery for many years. Some of them are in the Public Gallery today, including some who have travelled across the country to be here, so this is an important debate for all of us.

The devastation of those patients when Professor Malone-Lee’s clinic was closed temporarily last year and the ongoing concern that I and many others have over the clinic’s future have brought his unique methods into the spotlight. One patient told me that before she saw Professor Malone-Lee, she suffered every single day in pain, leaving her unable to function. Another told me that her life had not been worth living after 32 years of terrible pain and invasive treatments that failed to solve her bladder problems.

I am aware that the long-term future of Professor Malone-Lee’s clinic is the subject of a review by the Royal College of Physicians, so I do not intend to focus specifically on his work today. Instead, I will talk about the wider issue, which my contact with the professor and, more importantly, with so many of his current and past patients has highlighted: the inadequacies of the current testing regime to diagnose urinary tract infections.

The gold standard for diagnosing urinary tract infections over the past 60 years has been to culture a mid-stream urine specimen and identify a pure growth of a known urinary pathogen within a range. However, such dipstick tests have been known to be deficient for many years, with data as far back as 1983 casting considerable doubt on the veracity of their findings due to the lack of sensitivity. Such tests cannot exclude acute or chronic urinary tract infections and do not take into account differences in bacterial strain virulence, host genetic variability, intracellular bacterial reservoirs or even the dilution of the urine specimen due to high liquid intake before the test. The standard laboratory culture will miss 50% of infections. That matters, because these are real people with real symptoms.

Too many people have told me that they have spent years reporting horrendous symptoms and suffering terrible pain, but that they have been dismissed and told that they do not have an infection because the culture was negative. That is to confuse the absence of evidence of disease with evidence of the absence of disease, when those are two wholly different things. What happens to the poor people whose symptoms are dismissed based on a test that experts know to be inadequate? Some will recover and others will find that a short course of antibiotics cures their symptoms, but far too many others will enter a cycle of repeated acute infections, exacerbated by sex, exercise, alcohol, certain foods, stress and many other of life’s normal occurrences, causing devastation to their lives.

As many as 20% to 30% of patients fail to respond to the current recommended antibiotic treatment, whether it is prescribed for three or 14 days. That is not an insignificant number of people when one considers that the Cystitis and Overactive Bladder Foundation estimates that the condition affects about 400,000 people in the UK. Despite that, doctors are not being given the basic tools to inform them how to treat these symptoms differently, and they will not be until the health service revises the inadequate guidelines for testing and treatment. Professor Malone-Lee’s clinic has clearly shown that there are different and more effective ways of testing. Many patients who have not responded to conventional treatment have seen their lives transformed by antibiotic treatment over a prolonged period.

I am well aware of the understandable anxiety among many clinicians and inspectors about antibiotic resistance and the evolution of superbugs. That is clearly something that cannot and should not be ignored, but it is not a reason to fail to question the current guidelines for the treatment of chronic urinary tract infection or to ignore their clear inadequacies. Neither is it a reason to fail to manage the care of those who do not respond to so-called conventional treatment options and to leave them in distress for months and, all too often, years. What evidence is there about the consequences of partially treated urinary infection in the long term? Safe strategies should be developed for helping people who present with particular problems that do not respond to the so-called guidelines. Data show that the NHS spent £434 million on treating 184,000 patients in 2013-14 in unplanned admissions associated with urinary tract infections. Failing to adequately treat these patients is expensive for our NHS and devastating for the patients themselves. The testing and treatment methods employed through the lower urinary tract symptoms pathway under Professor Malone-Lee are estimated to cost approximately £409,000 for 1,000 patients compared with a cost of approximately £5.3 million for 1,000 patients using conventional methods.

I urge the Minister to give this neglected subject the attention it deserves, and I would be grateful for answers to the following questions. Why are people with symptoms and signs being told that they have no infection on the basis of discredited tests? Why are the existing guidelines and policies so didactic when the published evidence implies that there is considerable uncertainty about our knowledge of the condition? Why do these guidelines base their conclusions on the results of quantitative urinary culture which has been so discredited? What is the NHS provision for adults and children with long-term chronic urinary infections? Finally, why is there no tertiary care facility for recalcitrant cystitis in the NHS?

I ask the Minister to meet me and other MPs with constituents who have been affected by the inadequacies of the existing guidelines so that we can discuss this issue in more detail. This is a cause of immense suffering for many people across the country who struggle to be heard and to be taken seriously. I know that I also speak on behalf of MP colleagues who cannot be here today—many have sent apologies—when I say that many of those affected would be very keen to meet the Minister in person to share their experiences. Will she today agree to have a meeting with representatives from patient groups?