Snakes and bladders: how patients saved a pioneering medic cast down by NHS rules

Patients at Professor Jeremy Malone-Lee’s urinary clinic are often at their wits’ end with near-suicidal despair

Professor James Malone-Lee just happens to be one of those charismatic grey-haired-medical professors who wears stripy shirts and red braces and has a charming face with a veiny nose, and who always returns emails within 24 hours, being well-brought-up and genuinely compassionate. But all that would be of no use or interest whatsoever were it not for the fact that the man is, to thousands of patients who have suffered from a particularly nasty disease, a saviour. As can happen to saviours, he has recently been vilified and almost crucified.

The disease, Chronic Urinary Tract Infection, other-wise known as Lower Urinary Tract Symptoms (LUTS), is an embarrassing one in the ‘down there’ department. It can afflict anyone from children to adults, but is most common in women and it is debilitating. About 0.6 per cent of us will suffer from it: a small but significant minority. Symptoms include constant excruciating bladder pain and needing to go to the loo 120 times a day, which, taken together, make normal family life, work and relationships impossible.

Patients who eventually make their way to Professor Malone-Lee’s clinic at the Whittington Hospital in Hornsey, north London, desperate for a pee by the time they arrive, are often at their wits’ end with near-suicidal despair.-Usually it has taken them years of unsuccessful treatments with their GP and at their local hospital before they discover Malone-Lee and his tertiary clinic. They’ve been put on numerous short courses of antibiotics, which briefly worked before the symptoms returned with a vengeance, every time. They’ve been given cystoscopies, laparoscopies, bladder stretches, bladder botox and self-catheterisations: all agonising, and all, in the end, as useless as bloodletting turned out to be for George III. They’ve been told their problem is probably psychosomatic and have been sent home with painkillers and optimistic instructions to drink cranberry juice.

Clearly there’s something the medical establishment is missing here. Partly to blame for the appalling situation, says Professor Malone-Lee when I visit him at the clinic, is the dipstick for urinalysis. You bung this into a patient’s urine and send a sample off to the lab to see if there’s any sign of an infection. By the time the sample reaches the lab, it’s already lost half its data, and the analysis is so insensitive that it only picks up 50 per cent of infections that are there. So people are told there’s nothing wrong with them when they know there is. The first thing Professor Malone-Lee does is question his new patients in close detail about their symptoms, and the second thing he does is believe them. That in itself is balm. Then he examines a sample of the yellow stuff there and then, under a microscope — a good old, humble microscope — and hey presto – white blood cells, the telltale signs of an infection, stare him in the face: there must be an embedded intracellular horror that may require attack with long-term, high-dose antibiotics if it is to have any chance of eradication.

I’ve read the ‘bladder biographies’ of 20 of his most recent patients and they all, convincingly, tell a similar story: after years of gruelling treatments that didn’t work, the professor’s long-term high-dose antibiotic treatment has worked for them. Malone-Lee explains to his patients the risks and possible side–effects and they willingly sign up. These people, who had literally no life, now they have their lives back.

Then, last year, there was a ‘harm incident’. A patient suffered organ damage as a result of taking a high dose of the antibiotic Nitrofurantoin prescribed by Malone-Lee, and this incident exactly mirrored a harm incident, not of his doing, that happened six years ago. This was enough to set alarm bells ringing. Into action, swiftly, came the full force of ‘current NHS guidelines’ on antibiotic use. ‘Guidelines’, of course, actually means ‘rules’. A ‘Serious Incident’ investigation was set up and still continues. Last-October, a host of draconian restrictions on antibiotic–prescribing were imposed on Malone-Lee. They made it impossible for him to treat his patients in the way he believed they needed to be treated to get well, so he had no choice but to suspend his clinic. His 900 patients were sent a letter from Whittington Hospital NHS Trust, informing them of this, and saying there was a helpline-number to ring. The helpline number was not helpful. The patients felt abandoned. Their anguish was acute. Not able to get repeat prescriptions for their life-restoring treatment, the vast majority of those without medication deteriorated in health.

Malone-Lee thought his clinical career had come to an end. But now we come to another aspect of saviours: they have disciples. Those 900 patients, for whom his clinic had been (in their own words) ‘the very definition of salvation for each and every patient who has been fortunate enough to be in his care’, were not going to tolerate the situation. With the help of social media and the vast amounts of information on the internet, patients can now form themselves into well-informed, eloquent groups that will not take ‘no’ for an answer. This is exactly what happened. A campaign group was set up on Facebook. Over 5,000 people signed a petition on change.org to have the clinic reopened. A vast letter-writing spree was co-ordinated: the trust was sent hundreds of letters of complaint. The campaign group then raised the funds to bring a judicial review claim against the trust: a mass patient action.

It all worked. The night before the judicial review hearing was about to take place, the trust backed down. On 23 November, a month after the closure, Malone-Lee reopened his clinic under a set of lighter restrictions that bore no resemblance to the original draconian imposition. The only horrible restriction left is that he is not allowed to treat children. That’s pretty awful news, if you happen to be a child with the disease. (The guidelines say that children should never be given antibiotics for more than seven days.)

Antibiotics are unfashionable. There’s a justified fear that over-use will cause bacterial resistance and the rise of the superbug. But highly informed patients say that the real danger is when antibiotics are prescribed in repeated short courses, or for the common cold. And what should a doctor’s priority be: obey a guideline, or try to cure the flesh-and-blood patient in his care? Malone-Lee respects the justified fears about antibiotics, but says, ‘We should nevertheless put our best efforts into finding a safe and effective solution for those poor people who are affected.’ He likens the medical establishment’s obsession about ‘following the guidelines’ to medieval scholasticism, the rigid defending of dogma. ‘Whatever happened to sceptical empiricism? We’re regressing. It all comes out of the current obsession with central control.’

As the medical profession becomes more and more inhibited by strict centralised governance and guidelines, patients’ voices are going to be more and more pivotal in pushing medical practice forward and changing things for the better.

IN NUMBERS

5,000

people signed the petition to have
Professor Malone-Lee’s clinic reopened

900

patients say his antibiotic treatment was their ‘salvation’

0.6%

of UK population suffer debilitating lower urinary tract symptoms