Bereaved parents praise 'milestone' NHS guidance

The parents of a teenager with special needs who died after being prescribed an anti-psychotic drug have hailed the publication of new NHS guidance as a "significant milestone".

Oliver McGowan, 18, who was autistic and had epilepsy, was being treated for a seizure when he was given olanzapine to sedate him. He died in intensive care 17 days later after a rare side effect caused his brain to swell.

A report in 2020 found his death was "potentially avoidable", with his parents Paula and Tom McGowan, from near Bristol, blaming the "ignorance" of medics.

The couple said they hoped the new Oliver McGowan Code of Practice would bring "meaningful change".

After the drug was administered, Oliver's temperature rose and he showed signs of neuroleptic malignant syndrome.

The medication was stopped on 28 October 2016 and a CT scan two days later showed he had sustained a serious brain injury. He died on 11 November.

A review into Oliver's death concluded there had been a "general lack of understanding and acknowledgement of Oliver's autism and how Oliver presented himself when in seizure".

His parents have campaigned since his death for improvements in the system, and on Thursday the government published new guidance it said would ensure safer, more personalised care for people with a learning disability and autistic people.

Mr and Mrs McGowan said: "The publication of the code of practice marks a deeply emotional and significant milestone for us and will ensure Oliver's legacy will continue to make a difference by safeguarding people with a learning disability and autistic individuals from the same preventable failings that he tragically endured."

They added: "This is a true example of what meaningful change looks like - giving a voice to those who are not always seen or heard."

The government said training would be backed by funding as part of the Learning and Development Support Scheme for adult social care this autumn.

Care minister Stephen Kinnock praised the McGowans' "incredible campaign", adding: "This government recognises the appalling health inequalities faced by people with a learning disability and autistic people.

"Everyone deserves to receive high-quality, empathetic and dignified care but this cannot be achieved if staff do not have the right training."

Jackie O'Sullivan, of disability charity Mencap, said the new guidance has the potential "to transform care for people with a learning disability".

She added: "Whilst we have seen improvements in recent years, the life expectancy of people with a learning disability is still a shocking 23 years less than everyone else and people die of conditions which are entirely treatable."

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