University Hospitals Birmingham NHS Foundation Trust (UHB) has temporarily halted the routine use of Botox injections for Sphincter of Oddi Dysfunction (SOD), a rare and extremely painful digestive disorder, citing the need for further research to determine whether the treatment delivers meaningful and lasting benefits.
Vicky, 44, who has lived with SOD for over ten years, describes the condition as “soul-destroying.” SOD involves spasms of the sphincter muscle regulating the flow of digestive juices into the small intestine, leading to bile buildup, severe pain, and debilitating symptoms such as bile acid diarrhea and hives resembling jaundice. Since 2017, Vicky has found relief through regular Botox injections in the sphincter and pancreatic region, reducing her reliance on heavy medication and enabling her to maintain employment.
“Once I get the injections, they start working fast, and symptoms ease for about three months,” she explains. “When the effects wear off, the pain returns, and I schedule my next treatment.” However, she and other patients were recently informed that the trust would pause Botox treatments while it develops clinical research studies due to the treatment’s lack of approval by the National Institute for Health and Care Excellence (NICE) and absence of endorsement by specialist medical bodies.
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The trust’s statement highlighted that Botox for SOD is not nationally commissioned or supported by specialist clinical guidelines, necessitating an evidence-based review before continuing routine use. Vicky and other sufferers, some previously treated at Heartlands Hospital, have united to challenge this decision, concerned about losing access to a therapy that significantly improves their quality of life.
Without Botox, Vicky faces daily anti-sickness medication, high-strength painkillers, and treatments to control severe diarrhea—all of which negatively impact her daily wellbeing. Despite the trust’s offer to submit individual funding requests, patients fear the process will be lengthy and unlikely to secure approval. Private Botox treatment is available but prohibitively expensive, costing around £3,000 every three to four months.
Alternative options such as stent placement carry significant risks, including an estimated 90% chance of severe pancreatitis for patients like Vicky, limiting their viability. Vicky recalls the hardship of living without treatment during the COVID-19 pandemic, which caused her symptoms to worsen dramatically. She reflects on years of misdiagnosis before finally receiving Botox and expresses deep frustration and despair over its recent pause: “To find a treatment that works and then have it taken away is soul destroying.”
In response, a UHB spokesperson emphasized the trust’s commitment to patient safety and evidence-based care: “We recognize the uncertainty this creates and appreciate how difficult this is for those affected. Consultants can still access approved pathways, and we will support individual funding requests for exceptional use of non-commissioned treatments. We are reviewing how best to evaluate the procedure to inform future access and will keep patients updated as this work progresses.”
The pause on Botox treatment has brought to light the complex balance between ensuring clinical efficacy and maintaining access to therapies that greatly improve patients’ daily lives.