Hunter woman Paula McGowan awarded OBE, after son's death sparks campaign for change

It struck a chord with Mrs McGowan, who received the award for services to people with autism and intellectual disabilities, who she advocates for to receive equal health and social care.

Her son Oliver, 18, had both diagnoses and died what an independent review said was a 'potentially avoidable death' on November 11, 2016 in Southmead Hospital, Bristol.

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He'd been given anti psychotic drugs, despite not suffering from psychosis or mental illness, and with which he had previously experienced adverse side effects.

"I feel honoured, I feel humbled," Mrs McGowan said. "I feel that the OBE belongs to Oliver first, but it also belongs to Oliver's friends, so that means the autistic and the intellectually disabled communities whose voices are often not heard at all."

"Everything I have achieved - and it has been enormous - Oliver is behind everything."

Mrs McGowan and her husband Tom had long wanted to move to Australia and arrived in May 2018, after the inquest into Oliver's death. They live in Adamstown and are dual citizens.

She is a learning support assistant at St Francis Xavier's Primary School in Belmont and he is a squadron leader in the Royal Australian Air Force, stationed at Williamtown.

Mrs McGowan said it had been an emotional weekend reflecting on the honour.

"I was quite surprised, because obviously I did know about it, but this weekend the enormity and the realisation and realism about why I've achieved the OBE [hit me], it actually is a consequence of Oliver dying and losing his life," she said.

Oliver was born a month premature. He developed bacterial meningitis twice, which caused an infarction in his brain. This resulted in a mild hemiplegia, focal seizure epilepsy, a mild intellectual disability, mild cerebral palsy and, later, a diagnosis of high functioning autism.

But he didn't let this hold him back.

Mrs McGowan said Oliver met all his developmental milestones and was a "gregarious", "wise" and athletic young man and school prefect who people wanted to be around.

Mrs McGowan said Oliver was used to visiting hospitals for his epileptic seizures, but after one visit in October 2015 was prescribed an antidepressant to manage his anxiety about the seizures. He was not depressed.

"Horrifically we were not told anything about these medications, the clinicians - the decision makers - did not feel it necessary to tell us about the side effects, or even Oliver, who had full capacity," she said.

"A known side effect of the anti depression medication is to lower seizure threshold... as a consequence Oliver went from having two seizures a fortnight to 30 seizures a day.

"He had to go back to the same hospital, he was anxious and he was scared and they gave him anti psychotic medication.

"Oliver was not psychotic, or mentally ill."

Mrs McGowan said despite Oliver's behaviour during seizures being similar to how people without autism and intellectual disabilities would behave when compromised, medical staff only saw her son's diagnoses, not him.

"We call it diagnostic overshadowing, it's where they're not actually seeing what's really happening, they're seeing other things," she said.

"We have bias and prejudice and no real understanding of actual autism, sensory crisis, sensory overload - and the same with intellectual disability."

She said the staff's limited understanding of these conditions led them to prescribe Oliver with medication they wouldn't have given to people without these diagnoses, in order to manage what they deemed challenging behaviour.

Furthermore, she said, they didn't make reasonable adjustments that would have managed and de-escalated his anxiety, such as modifying their language and giving him personal space.

A doctor told the inquest he had heard about reasonable adjustments, but didn't know what they were.

"What we have found is that many many many autistic people and those with an intellectual disability are prescribed psychotropic medications that they absolutely do not need," she said.

"They are chemical cosh and they are shut up drugs, when in actual fact all Oliver needed was reassurance, reasonable adjustments - which is what the law says must happen - and just time."

Mrs McGowan said Oliver continued to be prescribed anti psychotic medication against his and his parents' wishes on a number of occasions, which increased his seizures, changed his behaviour and led to other effects including hallucinations and extremely high blood pressure.

Whenever he stopped medication, he appeared to return to his normal self.

Oliver died due to a combination of pneumonia and hypoxic brain injury.

This injury was caused by seizures and neuroleptic malignant syndrome, an adverse reaction to the anti psychotic medication Olanzapine.

"They told us Oliver's brain was so badly swollen it was bulging out the base of his skull."

Mrs McGowan started a parliamentary petition asking for all doctors, nurses, health care practitioners and social workers to receive mandatory standardised training in autism and intellectual disability.

The training is now being trialled and evaluated in England before a national rollout.

It has been co-produced and will be delivered by members of the autistic and intellectually disabled communities.

"It was not an option not to do anything about it... it was my duty to try to do everything in my power, to do it for Oliver, to do it for everybody else who has got autism and intellectual disability."

She wants to see the same training introduced in Australia, plus more patient-centred care.

"It's about changing culture, it's about changing hearts and minds.

"It's about the public saying 'We all belong in this universe, we should all be respected, valued and included'. It's about human rights."

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