Paula McGowan is the mother of Oliver and the founder of the Oliver McGowan Mandatory Training on Learning Disability and Autism, now statutory across NHS England and social care. This episode is about her son Oliver, the clinical failures that led to his death in 2016, and how she turned grief into one of the most consequential patient safety campaigns in NHS history.
Oliver: Who he was
Oliver was born a month premature and at three weeks developed bacterial meningitis. Doctors did not expect him to survive. He did , but was left with mild cerebral palsy, and later diagnosed with autism and a mild intellectual disability. He played football for England, trained with Team Bath for the Paralympics, and loved museums, culture, and art. He had a formal advance decision on record: he was not to be given antipsychotic medication, based on catastrophic previous reactions.
"He was a huge advocate for people who were less able than himself. He really was a character full of life, full of tenacity, full of a determination to do and achieve the best that he ever could."
The failures:
In 2015, Oliver was admitted to a children's hospital with seizures. An antidepressant was prescribed, which, the family later learned, lowers the seizure threshold. Seizures increased. On readmission, an antipsychotic was given. Oliver's reaction was severe and frightening. He was transferred to a London hospital, then a mental health unit, transported without warning, in a black van, without his family.
"He was autistic. He didn't know these people. And yet he was transferred much like a criminal would have been, in a black van."
The psychiatric intensive care unit withdrew all medication quickly. Within days Oliver was home, training again, himself again. But months later, at an adult hospital in Bristol, the family came prepared, a hospital passport, documented history, explicit advance decision. They were not listened to. The antipsychotic was given again that night.
"I can still remember to this day them turning away as if we were not in the room."
Oliver developed neuroleptic malignant syndrome, a known side effect of the drug he had documented he must not receive. His brain swelled. He was left profoundly disabled. He died on 11th November 2016.
What was behind it: Diagnostic overshadowing
Paula never received a formal explanation. But she knows what she witnessed: clinicians seeing the disability before the person. Oliver was not displaying challenging behaviour, he was scared, anxious, talking repetitively, wanting to walk. His distress was human, not clinical. The community neuropsychiatrist who had met Oliver twice told Paula directly:
"Mum, you cannot be mum and doctor. You need to know your lane. You are mum. I am doctor."
Paula does not attribute this to malice. It was unconscious bias and a total absence of training in what autism and learning disability actually mean for a person in a clinical setting.
The campaign: From grief to legislation
After the inquest, the family moved to Australia. Walking through the bush, Paula told her husband she needed to start a parliamentary petition. She wrote it herself, joined social media from scratch, and began telling Oliver's story. She completed 64 presentations in eight weeks, all free, on her own time, visiting medical schools and nursing universities across the UK. She connected with Jane Cummins (then Chief Nursing Officer), health minister Caroline Dinenage, Baroness Sheila Hollins, and Sir Norman Lamb.
"It was about not pointing fingers. It was always about talking collaboratively about what could have been done better. I wanted to hear what they really thought and I wanted conversations."
Resistance came, mainly from some doctors. Name-calling, misrepresentation, defensiveness. Paula's response was consistent: rise above it, keep working collaboratively, bring people on the journey.
The training: Now in law
Oliver McGowan Mandatory Training is now statutory, embedded in NHS contracts, and has received 85% positive feedback described as unprecedented by government. The code of practice is explicit: lived experience must deliver the training; learning disability and autism must be taught separately. Amanda Pritchard completed both tiers herself. Ruth May and Duncan Barton have been consistent champions.
"It's now in legislation. It's in the NHS contracts. So we need to stop complaining that you've got to do it. It's how do we do it and how do we get on with doing that?"
Paula is direct about remaining gaps: the team is small, ICB funding must be tracked, and some providers are charging extortionate delivery fees when the answer is simpler local lived experience trainers, trusts collaborating, building internal capacity. The South West is leading the way.
Leadership: What actually makes the difference
"If you're going to be a leader, lead properly. Don't rely on middle management. Senior leaders need to get into the middle ground, be curious, ask questions, and stop being defensive."
She describes meeting a senior leader recently who did not know Oliver's training is in legislation. She sees too much information filtered out at middle management level, and too little genuine curiosity from the top. The tendency to "other" patients with learning disabilities to create a them-and-us, is the cultural problem that training alone cannot fix.
"We've got to move and evolve and try to be better. Because currently we're not better and we're getting it wrong. We have to question ourselves. As professionals, we have to question ourselves and say: what can we do better?"
The person behind the campaign
Matthew asks how Paula has led this campaign without anger or blame. Her answer is clear and characteristic.
"I see myself very much as Oliver's voice. I didn't want what happened to Oliver to change who I was as a person. I didn't want to become angry and bitter. And I know that Oliver wouldn't want to do that to me."
She keeps the specific act that ended Oliver's life compartmentalised not because accountability doesn't matter, but because she refuses to tar all clinicians with the same brush. And she is pragmatic: blame closes doors. Collaboration opens them.
"If we want to bring about real change, we've got to work together. Nobody deserves to have the finger pointed at them. If you do that people will walk away and they will not engage."
Further Quotes
"I almost cringe now when I hear families saying, 'I just want lessons to be learned.' Because I know those words are totally ignored. What are we actually doing to make real change?"
"Never allow an organisation to make you into something that you don't want to be."
"We can do this. Work together and we'll do it."
Links and resources:
• Oliver McGowan Mandatory Training: www.olivermcgowan.org
• NHS England — Oliver McGowan Training: england.nhs.uk/learning-disabilities/training/oliver-mcgowan-mandatory-training
• STOMP Campaign: england.nhs.uk/learning-disabilities/improving-health/stomp
Matthew Winn, podcast host and an experienced leader in healthcare in the UK.