Failures at the University Hospitals Birmingham NHS Foundation Trust have surfaced, prompting serious allegations about the efficacy of deep brain stimulation (DBS) surgeries. A leaked report, analyzed by the BBC, reveals distressing findings where patients endured unnecessary hardships due to probes being placed incorrectly within their brains.
Wendy Swain is one such patient. She describes the past eleven years of her life as "hell" after undergoing DBS surgery, only to find out later the electrodes had been improperly positioned. This mistake resulted in difficulties for her when it came to walking and even led to facial twitches. "They’ve made my life hell," she lamented.
The troubling investigation has its roots deep within the issues tied to the NHS trust, which itself is already under scrutiny following earlier inquiries highlighting bullying and lack of transparency. Acknowledging their missteps, officials from the trust expressed their sorrow for the suffering caused and extended their deepest regrets to affected patients.
Dr. Chris Clough, who chaired the final investigative report, conveys his frustration, claiming the hospital has not exhibited the desire to learn from their glaring mistakes. He urged the trust: “I am begging them to get this report out and be open and fair with patients. There’s suffering here, and they need to let people know what went on.”
DBS is typically employed to treat severe movement disorders, such as those caused by Parkinson’s disease or dystonia, through the application of electrical pulses to specific brain regions. These pulses can significantly help control shaking and improve patients' everyday experiences.
The Queen Elizabeth Hospital, part of this NHS trust, was once recognized for its leading role in this innovative procedure, yet turbulence within staffing around 2017 precipitated declines in service quality. The independent report highlighted alarming accounts of patients—a number being rendered unable to walk or suffering from disordered speech and eyesight—who have reported feelings of hopelessness and suicidal ideation stemming from their experiences.
Among the shocking revelations, two patients had electrodes unnecessarily removed from their brains, denying them opportunities for improved health since their initial placements were correct. Additional troubling practices included presenting pre-operative images at meetings after surgeries had already been completed, leading to potential misinformation about the care being provided.
At the center of this storm was Anwen White, the primary surgeon who had conducted operations on notable figures, including Malala Yousafzai, the Pakistani activist shot by the Taliban. The saga of Mrs. Swain began with her first surgery under White's hands back in 2013. Initially, she felt the effects upon waking when she found it hard to walk and suffered from uncontrollable twitching. A case review later revealed her electrode had not only been misplaced but had continued to function improperly for years.
"I look at people walking and think, 'I wish I could be like them.' I just want to be how I was," Mrs. Swain expressed, illustrating the emotional toll her health struggles have taken on her. After years had passed, she finally had another chance for correction via surgery, only to discover yet again, the newly positioned electrode had reverted back to its incorrect placement.
Taking up the banner for transparency was nurse Jamilla Kausar, who made her role as whistleblower notorious after raising alarms about the welfare of patients. To her dismay, not only were her concerns dismissed, but she found herself bullied and eventually disciplined by those around her. Reports indicate there were multiple missed opportunities to act upon her warnings, which pointed to systematic failings within the surgical service. Eventually, the DBS service was suspended three times, culminating in its final shutdown by October 2019.
Kausar went as far as redirecting troubled patients to the John Radcliffe Hospital, where care was reportedly more reliable. A letter from Oxford's Prof Tipu Aziz indicated alarming statistics; by January 2020 alone, eight additional cases were under revision—highlighting the incompetence of the implants being performed.
The truth surfaced following scrutiny of the care provided to Chris Tyler, another patient affected by mishandled surgery. Tyler described how probes placed by Mrs. White resulted not only in solace but also severe speech difficulties and the inability to perform basic tasks. He revealed he felt betrayed, articulately saying, "There was a culture of failure and a culture of not wanting to take responsibility for what happened." His story is heartbreaking; following his treatment, the issues were identified only after he sought help from Oxford, where he learned his probes had been placed poorly.
This same pattern echoed for another patient, Keith Bastable, who suffered severe side effects following his DBS surgery back in April 2019. Eventually, after finally receiving care at Oxford, Bastable discovered the truth: his probes were so faulty, they couldn’t function properly. "Nobody would tell me what was wrong, and Mrs. White wouldn't see me. I went to Oxford, and they told me exactly what was wrong," he recounted, keeping his disbelief front and center about their lack of transparency.
Fortunately, following corrective surgery, Bastable was able to find renewed hope, returning to work and engaging with sports he previously had to give up. Yet, the frustrations surfaced with his wife, Jennifer, who expressed anger about wasted time: “Why hasn't someone said enough is enough? Patients had to start complaining to make things happen.”
The investigation revealed stark statistics indicating up to 12 out of 15 patients treated within the period of 2017 to 2019 had probes likely implanted incorrectly, with overall outcomes deemed unsatisfactory for 38 patients. From these observations period, it became chillingly apparent there was rampant negligence as the failure rate crescendoed to 59%. Past reports claimed Mrs. White had been mentored by earlier neurosurgeons who had reportedly made similar errors, which left many questioning the oversight protocols for such pivotal surgeries.
The revelations continued to unfurl as one of White's final patients, Patricia Hunter, succumbed to similar issues following surgery—experiencing significant facial twitching alongside severe difficulties relating to speech and vision. Hunter's husband, David, expressed frustration, noting throughout their ordeal, White insisted everything had gone according to plan, consistently minimizing their distress.
Caught within these crises, the medical defense union has barred White from commenting due to patient confidentiality. Meanwhile, the University Hospital Birmingham continues to assert the DBS service’s focus on revising protocols to regain their footing.
With so many lives affected by mismanaged care, the weight of these accounts not only paints a distressing picture of the current state of some NHS services but also highlights urgent calls for introspection and reformation within healthcare structures. The stories of patients like Wendy Swain, Chris Tyler, and others serve as powerful reminders of how overlooking procedure and care can devastate lives.