The BBCPatients who underwent probes in the wrong part of their brains suffered needlessly for years because of failings at an NHS trust, a damning report has revealed.
A leaked report of deep brain stimulation (DBS) surgery at University Hospitals Birmingham NHS Foundation Trust, seen by the BBC, also shows that a whistleblower was ignored, intimidated and disciplined. He was arrested.
Wendy Swain, who had misplaced electrodes for 11 years, which left her with walking problems and facial contortions, said: “They’ve made my life hell.”
confidence, It is already under fire after an inquiry exposed a culture of bullying and a lack of openness.said it was “truly sorry” for the mistakes and felt “deep regret”.
Wendy SwainDr Chris Clough, former head of the National Clinical Advisory Team which oversaw the final report on brain surgery failures, said he did not believe the trust was learning the lessons.
“I am urging them to come forward with this report and be open and fair with patients,” he said.
“There’s suffering that’s going on here and they need to tell people what happened.”
DBS is a surgical treatment for people with severe movement disorders such as Parkinson’s disease and dystonia.
Electrical pulses can significantly reduce a patient’s uncontrollable tremors and improve their quality of life.
Wendy SwainThe Queen Elizabeth Hospital in Birmingham, run by the trust, one of the largest hospital trusts in England, pioneered the procedure and was one of the leading centers in the UK.
But the service’s performance worsened due to staffing changes around 2017, the independent report found.
Patients were left unable to walk with slurred speech and vision problems. Some had to quit their jobs and reported suicidal feelings.
The report also revealed:
- Two patients had electrodes unnecessarily removed from their brains when they were in place, potentially leading to better health.
- Preoperative images of patients were presented at quality control meetings after surgery was completed, which could have led to misleading results.
The primary surgeon in the DBS service at the trust at the time was Anwyn White – best known for the Taliban’s operation on Pakistani schoolgirl Malala Yousafzai.
Mrs White had her first operation on Mrs Swain in 2013.
After the surgery, the patient said he immediately noticed that his foot was dragging and that he had a severe facial contusion.
A review of his case revealed that the right electrode was in the wrong position.
It took six years for Mrs White to have further operations but it was later discovered that the electrode had gone down the same track as before and her problems continued.
“They made my life hell. My brain had to reprogram itself to be more disabled,” Mrs Swain said.
“I look at people walking and think ‘I wish I was like that’. I just want to be the way I was.”
Senior nurse Jameela Kausar became a whistleblower for raising concerns about patient safety and the service was suspended by the divisional director in July 2017.
But not only was she not taken seriously, she was subjected to reprisals from medical colleagues and missed an opportunity to act on her concerns, the report said. He later faced disciplinary action.
The service was shut down and restarted a total of three times, finally ending in October 2019.
Ms Kausar began referring patients who reported problems to Oxford’s John Radcliffe Hospital.
In January, 2020, Professor Tipu Aziz, from Oxford University Hospitals NHS Trust, wrote to the Clinical Lead for Neurosurgery in Birmingham, “We have reviewed 10 cases in the last year and now have another eight.
“The implants are done incompetently.”
The failure was initially exposed by a serious incident report. Under the care of Chris Tyler.
An investigation put in by Mrs White in 2017 and replaced in 2019 led to slurred speech and an inability to function.
Both times, the probe was misplaced and the failure was eventually corrected by further surgery at Oxford.
“There was a culture of failure and not wanting to take responsibility for what happened and I feel a bit betrayed,” Mr Tyler previously said.
Another patient, Keith Bastable, developed “unbearable side effects” from his surgery in April 2019, including slurred speech and vision problems.
Mr Bastable wrote to the trust that he had only seen Mrs White twice – the day of the operation and the day the electrodes began to be programmed.
By the time they met at the neurosurgery unit in Oxford, they were told the leads were too far off target to work.
“Nobody would tell me what was wrong and Mrs White wouldn’t see me. I went to Oxford and she told me exactly what was wrong.”
“Why didn’t Birmingham tell me?”
Another operation in Oxford has now fixed the problem and he is able to work and play walking football.
His wife Jennifer said: “I’m angry, our precious time has been wasted.
“Why didn’t anyone say enough is enough? Patients had to start complaining to get things done.”
After the service was stopped a third time, a review concluded that 12 out of 15 patients, in a sample taken between 2017 and 2019, may have been probed in the wrong places.
The final report concluded that 38 patients had unsatisfactory outcomes.
While problems with three surgeons were highlighted, it was the 2017-19 period where the failure rate was 59 per cent that was the most worrying.
A previous independent report in 2021 said Mrs White had been trained by a senior neurosurgeon who had made similar mistakes and it was not surprising that she faced difficulties.
The familyOne of the last patients Mrs White treated was Patricia Hunter in September 2019.
His surgery resulted in facial twitching, speech and vision problems.
Tests revealed the electrodes had been inserted too deep into her brain but Mrs Hunter’s husband David claimed Mrs White kept saying everything was done correctly.
“There was no acknowledgment that anything was wrong. It was always that the electrodes were in the right place and we just had to program it,” he said.
The Medical Defense Union told the BBC that Mrs White was unable to comment on either case due to patient confidentiality.
University Hospital, Birmingham said the DBS service was suspended indefinitely in 2019.
“It is clear that many patients had poor outcomes from their surgery, and in some cases, their symptoms, health and mental well-being worsened,” a spokesman said.
“This is deeply regrettable and the Trust has worked to learn from it.
“We would like to reiterate our apologies to patients who were not informed about the optimal electrode placement at the time of surgery.”
The BBC has learned that neurologists – and neurosurgeons who performed the majority of DBS procedures in 2017-19 and whose results flagged them as outliers – are now considering DBS. will take no further part in the care of patients.
A surgeon whose period of absence is over is being helped to re-establish his practice in other areas of neurosurgery.