Birmingham Hospital Pauses Botox Treatment for Rare Digestive Disorder
University Hospitals Birmingham NHS Foundation Trust has temporarily suspended Botox injections for patients suffering from Sphincter of Oddi Dysfunction, a rare and extremely painful digestive condition. The trust announced it is developing a research study to determine whether the treatment provides meaningful and lasting benefits.
Patient Describes 'Soul-Destroying' Decision
Vicky, a 44-year-old senior hospice receptionist from Shifnal who was diagnosed with the disorder around a decade ago, said the pause is devastating. She has been receiving regular Botox injections since 2017 to manage her symptoms.
Sphincter of Oddi Dysfunction causes the muscle controlling digestive juice flow into the small intestine to spasm and not open properly. This leads to a buildup of bile and other fluids, resulting in severe pain and nausea.
"I have bile acid diarrhoea, I get hives because it's like having jaundice - it's not an easy condition to live with," Vicky explained about her flare-ups.
Treatment Provided Life-Changing Relief
Since beginning Botox treatment, Vicky said she found significant relief. "I don't have to take as much heavy-duty medication and I'm able to hold down a job, which prior to starting treatment, was really difficult," she said.
The injections typically provide relief for about three months before wearing off. "Once you've had the injections, it doesn't take very long to start to work," Vicky noted. "I know when it starts to wear off as I start to have attacks again and the symptoms start to get more progressive."
Trust Cites Lack of National Approval
University Hospitals Birmingham explained their decision, stating: "Botox injections for Sphincter of Oddi Dysfunction are not approved by NICE, are not included in national commissioning guidance, and are not supported by relevant specialist clinical bodies."
The trust added: "For this reason, the trust has paused routine use of the treatment while we develop a research study to understand whether it provides meaningful and lasting benefit."
Patients Challenge the Decision
Vicky revealed that several patients who were receiving treatment at Heartlands Hospital have joined together to challenge the trust's decision. "Until I had the phone call from my consultant, there was no hint that they were looking at not doing it as a treatment any more," she said.
Without Botox, Vicky anticipates returning to daily anti-sickness medication, high doses of loperamide for bile acid diarrhoea, and strong pain relief. "It impacts your day to day life then, you've got to weigh up taking high-dose medication and having some sort of a normal life," she explained.
Limited Alternative Options Available
Vicky described limited alternatives for treating her condition. "They can put stents in, which may last a little bit longer, but for patients like me, who are prone to pancreatitis, that option leaves me at a 90 per cent chance of having severe pancreatitis," she said.
During the coronavirus pandemic when she couldn't access treatment, Vicky experienced severe symptoms. "It wasn't good at all. For me, it caused severe hives, it made everything back up, I was sick, I didn't keep very well at all," she recalled.
Trust Responds to Patient Concerns
A UHB spokesperson addressed patient concerns, stating: "We recognise the uncertainty this creates for patients and appreciate how difficult this is for those affected. Our priority is to ensure all treatments we offer are safe, effective, and supported by evidence."
The spokesperson added: "Consultants can continue to access approved pathways, including acute pain management services, and we will support Individual Funding Requests for exceptional and compassionate use of non-commissioned treatments."
The trust confirmed they are reviewing how best to evaluate the procedure to inform future access and will keep patients updated as this work progresses.
Vicky expressed frustration with the process, noting that private treatment would cost approximately £3,000 every three to four months, making it financially unfeasible for most patients. "I get if they need to do research into it, but surely it's more clinically ethical to keep giving it to the patients already on a regime with it," she argued.
Reflecting on her journey to diagnosis and treatment, Vicky said: "It took long enough for someone to believe the symptoms I was having and look into it further. To have gone through that, and to find a treatment and then have it taken away from you is soul destroying."
