A mum has courageously spoken of the moment she learned her son would never be able to speak or share his "beautiful" smile again.
Paula McGowan has shared a 20-minute video about her son Oliver McGowan and his "potentially avoidable" death, which will eventually be shared with health and care professionals around the country as part of new mandatory training she tirelessly campaigned for.
Oliver, from Emersons Green near Bristol, was 18 when he died at Southmead Hospital in November 2016.
He had mild autism, epilepsy as well as learning difficulties, and was admitted after having partial seizures.
Despite clear instruction not to prescribe him anti-psychotic drugs due to bad reactions in the past, doctors did and he developed severe brain swelling, leading to his life support machine being switched off.
His parents Paula and Tom McGowan have since been campaigning for better understanding of how to care for people with autism and learning disabilities.
Speaking in the new NHS video, Oliver's mum recalled "being taken to the side room that nobody ever wants to enter" after doctors carried out an MRI scan.
She said: "My boy, my Oliver, was now paralysed. There was no more representing his country in athletics or football.
"That beautiful smile, that sense of humour, and those wise, wise words of wisdom - they were gone forever. My boy was silenced."
The video released by NHS Health Education England is part of a trial training programme announced in August, called the Oliver McGowan Mandatory Training in Learning Disability and Autism.
It will eventually be rolled out to health and social care staff in England, to ensure they are equipped to care for patients with autism and learning disabilities.
'Discrimination must be stamped out'
Sharing the video on Twitter this morning (Wednesday, March 17), Paula, who now lives in Australia, wrote: "This is Oliver’s story and how he lost his life.
"Discrimination and prejudice against learning disabled and or autistic people must be stamped out."
In October an independent review commissioned by NHS England concluded that Oliver's death was "potentially avoidable".
It highlighted "unacceptable" failures during the initial review process, prompting Bristol, North Somerset and South Gloucestershire CCG to admit that the handling of the earlier review "remains a deep source of regret".
Speaking in the video, Paula said she feels the new training is "vitally important".
She added: "Oliver's story is not about pointing figures, it's not about blame.
"It's about us coming together, working together, to try to prevent further avoidable deaths like Oliver's from happening over and over again."
'He never failed to light up the room'
She spoke of how as soon as Oliver was born, they had an "overwhelming" love for him and knew he was special.
Smiling as she recalled his approach to life, Paula added: "Oliver's disability didn't hold him back, he had the most amazing can-do attitude.
"He brought so much fun and happiness to our lives, and he always saw the best in everything.
"He never failed to light up the room with the sound of his laughter."
Oliver was a keen footballer and athlete with hopes of becoming a Paralympic sportsman, and was described in the video as someone who was "kind and friendly" with a witty sense of humour and "inspirational" courage.
His previous adverse reactions to anti-psychotic medication was clearly noted on his records and in various letters, and Oliver himself, as well as his parents, had instructed doctors that he was not to be administered any.
Against their wishes, he was given anti-psychotic medication and his condition deteriorated over the next couple of days.
Due to severe swelling of his brain, doctors said he would have no ability to speak, communicate or understand language, and he would have to be tube-fed for the rest of his life.
Oliver died on November 11, 2016, a few days after his life support machine was switched off.
Paula said this date was particularly poignant for them as Oliver was a Royal Air Force child and had lived his whole life as part of the military family.
This new training is a milestone in her campaign for change and once the trail is complete, the Department for Health and Social Care will use the evaluation to inform a wider roll-out.
It comes after she launched a Parliamentary petition in 2018 calling for mandatory autism and learning disability training for healthcare professionals.
It received more than 50,000 signatures and was debated in Parliament.
More information about the training programme is available on the NHS Health Education England website and details on Oliver's Campaign is available on olivermcgowan.org.
