NHS told to improve after ‘potentially avoidable’ death of autistic teenager

The death of an autistic teenager who was given anti-psychotic medication by NHS staff against his and his parents’ wishes was “potentially avoidable”, a new independent review has concluded.

The decision overturns an earlier investigation labelled as being “mismanaged, poorly monitored” and carried out without “due rigour” by the latest analysis.

The parents of Oliver McGowan are now calling for fundamental changes to the way the deaths of people with learning disabilities and autism are examined by the NHS after their son’s case exposed weaknesses in the national system which examines more than 4,000 reported deaths a year.

An independent report for NHS England, by Fiona Ritchie OBE, said a panel of experts had unanimously agreed Oliver’s death was “potentially avoidable”.

It also revealed how NHS staff felt “bullied” and intimidated by managers to change an earlier investigation report to remove a conclusion that Oliver’s death could have been avoided.

Oliver’s parents Paula and Tom McGowan said: “We have always known that Oliver’s death was avoidable. He was a healthy, fit teenage boy who walked into Southmead hospital having absence type seizures and left in the back of a coroner’s van, headed for the local mortuary.

“Oliver died due to a combination of prejudice, subconscious bias and diagnostic errors overshadowing treatment decisions by those caring for him. The medical system failed to understand how his autism, epilepsy and learning disability affected him and so their care failed him.”

The new report recommended a review of the way the deaths of people with learning disabilities and autism are examined by the NHS and said reporting a death should be made mandatory with families given full access to documents and meetings.

Eighteen-year-old Oliver, who had autism, died in November 2016 after being given the anti-psychotic medication olanzapine against his own and his parents’ wishes by staff at Bristol’s Southmead hospital, part of the North Bristol NHS Trust.

Oliver’s medical records showed he had an intolerance to anti-psychotic drugs and shortly after he was given the dose he developed severe brain swelling and died.

While a coroner ruled the medication was appropriately prescribed Avon and Somerset Police have begun an investigation into his death.

Last year it emerged staff in the NHS rewrote an earlier report that said Oliver’s death was avoidable after senior managers intervened before it was published.

The new report, published by NHS England on Tuesday, found serious failings in governance at Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group where staff said they felt they had no choice but to change the report.

Emails obtained by the family showed staff discussing how to remove “anything that seems to indicate any sort of blame”.

In 2017 a new member of staff was asked to lead a review of Oliver’s death but she was given limited training and had never done such a review. It took 17 months to complete.

In an interview for the NHS England report the nurse said she “did what I was told, I had no one to talk to, I was forced to compromise my values, I am proud to be a nurse, I feel very ashamed by this and I will have to live with it”.

She added she feared she would be sacked if she didn’t agree to change the conclusions: “I would have been sacked, no doubt about it, they never said this, but I knew.”

The NHS England report concluded that “from the outset, Oliver’s LeDeR [learning from deaths of people with a learning disability review] was mismanaged, poorly monitored and allowed to progress without due rigour or any independent oversight”.

It added: “All necessary steps must be taken to ensure that LeDeR becomes robustly embedded nationally, so that health and social care services can effectively tackle the pressing and widespread issue of premature deaths of people with learning disabilities. This is the mission LeDeR was established to achieve.”

The report recommended the Care Quality Commission consider investigating NHS hospitals and how they support people with learning disabilities and autism.

It also recommended the medicines watchdog Nice develop new standards on the use of drugs to manage patients like Oliver.

NHS England has pledged to invest £1.4m training NHS staff on how to care for patients with learning disabilities and autism and has agreed to name the training after Oliver.

The report recommended this training should first be carried out at Southmead hospital, where Oliver died.

North Bristol NHS Trust chief executive Andrea Young said: “The staff who cared for Oliver did their very best in managing his complex needs as his health was deteriorating.

“They made decisions, as they do on a daily basis, to weigh up all the risks and sought to give him the best possible treatment.

“Sadly Oliver died in our hospital and we are sorry for his loss.  We are determined to offer exceptional care for individuals with learning disabilities and autism and we have already significantly improved training and support for staff.

“We are committed to continue learning and will act on this report.”

Dr Celia Ingham Clark, NHS medical director for professional leadership and clinical effectiveness, said: “I would like to thank Fiona Ritchie and her team for conducting this review, it is absolutely right that the NHS took the decision to review Oliver’s care so that his family could get the answers they deserve.  

“Work has already begun with key partners to improve how people with a learning disability are cared for and how families are involved in the learning disability mortality review process – the recommendations in this report will be carefully considered as part of that process.”