Failure of brain operation made life of patients ‘hell’

Patients who had tests done in the wrong part of their brain suffered years of unnecessary suffering due to failings by an NHS trust, a devastating report has found.

The leaked report into deep brain stimulation (DBS) surgery at University Hospitals Birmingham NHS Foundation Trust, seen by the BBC, also reveals that whistleblowers were ignored, intimidated and disciplined.

Wendy Swain, who had electrodes implanted in the wrong place for 11 years, causing difficulty walking and facial twitches, said: “They have made my life hell.”

Reliance, Already facing criticism after an investigation revealed a culture of bullying and a lack of opennessSaid he was “really sorry” for the mistakes and felt “deeply regretful”.

Dr Chris Clough, former chairman of the National Clinical Advisory Team, which oversaw the final report into brain surgery failures, said he did not believe the trust was learning its lessons.

“I’m pleading with them to bring this report forward and be open and fair with patients,” he said.

“There is suffering here and they need to let people know what happened.”

DBS is a surgical treatment for people with severe movement disorders such as Parkinson’s disease and dystonia.

Electrical waves can significantly reduce a patient’s uncontrolled tremors and improve their quality of life.

The Queen Elizabeth Hospital in Birmingham, which is run by the trust, one of the largest hospital trusts in England, led the process and was one of the leading centers in the UK.

But the independent report found that service performance deteriorated due to staffing changes around 2017.

Patients became unable to walk, had difficulty speaking and had 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 even though they were in place, denying them a chance for better health.
• Pictures taken before patients were operated on were presented at quality control meetings after surgery, which could have led to misleading results

The primary surgeon in the DBS service at the Trust at this time was Anwen White – best known for operating on Malala Yousafzai, the Pakistani schoolgirl who was shot in the head by the Taliban.

Mrs Swain’s first operation was performed by Mrs White in 2013.

After the surgery, the patient said she immediately noticed that her leg was dragging and that her face was in severe convulsions.

A review of his case found that the right electrode was in the wrong position.

It took six years for Mrs White to undergo a further operation but it was later discovered that a re-installed electrode had moved on the same track as before and her problems continued.

“They have made my life hell. My brain had to reset itself to be more incompetent,” Mrs. Swain said.

“I look at people walking by and think ‘I wish I was like that.’ I just want to stay the way I was.”

Senior nurse Jameela Kausar became a whistleblower for raising concerns about patient safety and was suspended from service by the divisional director in July 2017.

But the report says that not only was she not taken seriously, she became the victim of retaliation from medical colleagues and missed the opportunity to act on her concerns. He later faced disciplinary action.

The service was stopped and restarted a total of three times, ultimately ending in October 2019.

Ms Kaussar began referring patients reporting difficulties to the John Radcliffe Hospital in Oxford.

In January, 2020, Professor Tipu Aziz, of Oxford University Hospitals NHS Trust, wrote to the clinical lead for neurosurgery in Birmingham, saying: “We have revised 10 cases last year and have a further eight cases so far.

“The transplant has been performed inefficiently.”

The failure was initially highlighted by a serious incident report Under the supervision of Chris Tyler,

The investigation, imposed by Mrs White in 2017 and replaced in 2019, led to slurred speech and an inability to function.

Both times, the probe was in the wrong place and the failure was eventually corrected by further surgery in Oxford.

Mr Tyler previously said, “There was a culture of failure and a culture of not taking responsibility for what happened and I feel a little betrayed.”

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 saying he had seen Mrs White only twice – the day of the operation and the day the electrodes began programming.

It was not until their meeting in the neurosurgery unit in Oxford that they were told that the clues were so far off target that they could not work.

He said, “Nobody would tell me what was wrong and Mrs. White wouldn’t look at me. I went to Oxford and she told me exactly what was wrong.”

“Why didn’t Birmingham tell me?”

The problem has now been resolved following another operation in Oxford and he is able to work and play walking football.

His wife Jennifer said, “I’m angry. We’ve lost precious time.”

“Why didn’t anyone say enough? “To get things right, patients had to start complaining.”

After the service was halted for the third time, a review concluded that 12 of 15 patients sampled between 2017 and 2019 were potentially misdiagnosed.

The final report concluded that 38 patients had unsatisfactory outcomes.

Although the problems of the three surgeons were highlighted, it was the period of 2017-19 where there was a 59% failure rate that was of most concern.

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 she had difficulties.

One of the last patients treated by Mrs White was Patricia Hunter in September 2019.

His surgery caused facial twitching and problems with speech and vision.

Reviews found electrodes had been placed too deeply into her brain, but Mrs Hunter’s husband David claimed Mrs White kept saying everything was done correctly.

He said, “There is no admission of anything being wrong. It was always the case that the electrodes were in the right place and we just had to program it.”

The Medical Defense Association told the BBC that Mrs White was unable to comment on any of these cases due to patient confidentiality.

University Hospital, Birmingham said the DBS service was suspended indefinitely in 2019.

A spokesperson said, “It is clear that many patients had poor outcomes from surgery and in some cases their symptoms, health and mental state worsened.”

He said, “This is a matter of great regret and the Trust has learned from it.”

“We would like to reiterate our apology to those patients who were not made aware of the sub-optimal placement of electrodes at the time of surgery.”

The neurologist – and neurosurgeon who performed the majority of DBS procedures in 2017-19 and whose results marked him out as an outlier – will play no further role in the care of DBS patients, the BBC has learned.

A surgeon who has been away for some time is being helped to re-establish his practice in other areas of neurosurgery.