The decision to close a “pioneering clinic” treating those who suffer chronic pain from urinary tract infections (UTI) could lead to suicides and people buying medication on the black market, a group of patients warned.
People treated by Professor James Malone-Lee reacted with fury after seeing their clinic at Hornsey Central Health Centre suddenly suspended two weeks ago due to a patient suffering organ damage.
The closure, prompted by Whittington Health, which oversees the clinic, was said to be linked to Prof Malone-Lee’s “unorthodox” use of high dose antibiotics against NHS guidelines.
But more than 3,300 people, including patients’ GPs, have now signed a petition calling for the clinic to reopen, saying Prof Malone-Lee’s treatment is “the only thing that works”.
Last Wednesday, about 15 patients angrily confronted health chiefs at the Whittington’s monthly board meeting and accused them of an “overreaction” and abandoning patients.
One woman, who wished to remain anonymous, said: “You are effectively putting hundreds of us at risk. Some of us are now buying antibiotics off the internet. Some are even considering suicide. The NHS guidelines of short-term antibiotics doesn’t work.”
Another patient added: “We all feel we have given informed consent to this treatment. No medication is side effect free. For us, it’s this or nothing.”
Much of the anger was directed at Dr Richard Jennings, the Whittington’s medical director, who informed Prof Malone-Lee he could no longer provide his “unique” treatments.
Dr Jennings said the decision – a “judgement call” – was to protect the more than 900 patients registered at the clinic. He accepted that the professor’s research was “peer reviewed” but said the recent safety incident mirrored another a few years ago.
A number of patients shared their personal stories with board members to highlight the pain they were in before being referred to Prof Malone-Lee. Many said they had been unable to leave the house and had suffered severe depression.
Penaran Higgs said she was driven to despair by her UTI.
She told the Ham&High: “The pain is a bit like this – imagine that as your bladder fills it feels like knives stabbing you internally, and then when you do urinate, it feels like you are weeing through razor blades. And then seconds later you feel like you need to wee again. So much so you cannot read a book, watch a film, sleep, eat or enjoy a piece of music.
“After a while, I began to develop depression. I felt suicidal.
“My husband had to hide the knives in the house because I wanted to cut out my bladder, or kill myself.”
She added: “Should the clinic remain suspended I, along with hundreds of others, face a difficult choice: either self-medicate with antibiotics bought off the internet or pester our GPs for life-long, strong pain killers.
“I know that many, left in severe pain with no end in sight, will have no option but to end their lives.”
The Change.org petition demanding the clinic be reopened includes a long stream of other patients’ stories of how Prof Malone-Lee’s clinic has helped them.
Whittington Health has not indicated it would reopen the clinic. Instead, its chief executive, Simon Pleydell, suggested at the board meeting their hands were tied by national guidelines.
A spokesman for Whittington Health said: “Following an alert about a safety incident, and in order to protect patient safety, Whittington Health has suspended an outpatient clinic that was being held at Hornsey Central Neighbourhood Health Centre. The Centre itself remains open as usual. The clinic provided the Lower Urinary Tract Service (LUTS).
“This change has been necessary because of concerns about possible risks to the health of patients associated with some of the antibiotic prescriptions.
“This change was made at short notice and we apologise to patients and their families for any inconvenience or distress that this has caused.
“We will be offering alternative clinic appointments to all of the patients. We are also writing to all patients to advise them of this and to give them details of a helpline that they can phone.
“We would like to reassure patients and their families that we will continue to ensure that they receive good, safe care.
“Whittington Health is commissioning an external review of the suspended Lower Urinary Tract Service and we will re-evaluate the position once the findings of that review are available.”
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