Parents of autistic teenager who died hail ‘milestone' NHS training guidance

Independent

14 hours ago

The parents of an autistic teenager who died after being prescribed medication against his and his parents' wishes have hailed the publication of guidance they hope will safeguard others as a 'significant milestone'.
A report in 2020 found 18-year-old Oliver McGowan's death four years earlier was 'potentially avoidable'.
He died at Southmead Hospital in Bristol in November 2016, after being given the antipsychotic Olanzapine and contracting neuroleptic malignant syndrome (NMS) – a rare side-effect of the drug.
An independent review later found that the fit and healthy teenager's death was 'potentially avoidable' and his parents, Paula and Tom McGowan, said their son died 'as a result of the combined ignorance and arrogance of doctors' who treated him.
The learning disability mortality review (LeDeR) into the death concluded there had been a 'general lack of understanding and acknowledgement of Oliver's autism and how Oliver presented himself when in seizure' and that there had been a 'body of written evidence – alongside verbal requests from Oliver and Oliver's family – not to prescribe' Olanzapine.
After the Olanzapine was administered, Oliver's temperature rose and he showed signs of NMS.
The medication was stopped on October 28 and a CT scan two days later showed Oliver had sustained a serious brain injury. He died on November 11.
His parents have campaigned since his death for improvements in the system and, on Thursday, the Government published new guidance it said will ensure safer, more personalised care for people with a learning disability and autistic people.
The teenager, from Emersons Green, Bristol, had contracted meningitis twice during childhood and lived with epilepsy, learning difficulties and autism as a result.
The Government said the Oliver McGowan Code of Practice on statutory learning disability and autism training aims to ensure staff have the right skills in providing care and better understanding of the needs of autistic people and those with learning disabilities.
The guidelines for health and care providers to train staff set out the standards expected from care providers to be compliant with the law and help make sure patients are kept safe.
Mr and Mrs McGowan said they hope the guidelines will bring 'meaningful change' and have a 'lasting impact'.
They 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.
'The code establishes a comprehensive legal framework for the delivery of the training, promoting consistency and a deeper understanding across health and social care services.
'We are profoundly grateful to cross-party politicians for their unwavering support and especially to Baroness Sheila Hollins, whose leadership has been pivotal in advancing this important work.
'Our heartfelt thanks extend to everyone within the NHS and social care sectors, to our expert trainers, and to individuals with a learning disability and/or autism, along with their families and carers.
'This is a true example of what meaningful change looks like, giving a voice to those who are not always seen or heard, creating a lasting impact that will continue to transform lives for the better.'
Paying tribute to the McGowans, care minister Stephen Kinnock said they had been behind an 'incredible campaign to improve the care of people with a learning disability and autistic people after the tragic death of their son, Oliver.'
He added: 'Through their work, they have shown admirable dedication, commitment and passion – Oliver's memory and legacy lives through them.
'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. The Oliver McGowan Code of Practice published today will be a boost for anyone with a learning disability or autistic people, their families and loved ones.'
The Government said training will be backed by funding as part of the learning and development support scheme for adult social care this autumn.
Tom Cahill, national director for Learning Disability and Autism at NHS England, said: 'We know that often the quality of care and support for people with a learning disability and autistic people has not been good enough and we are determined to make this better.
'This code of practice – a result of Paula and Tom McGowan's tireless dedication – will mean all NHS staff have the training and support they need to reduce inequalities and give people with a learning disability or autistic people the care they deserve.'
Learning disability charity Mencap's executive director of strategy and influence, Jackie O'Sullivan, said the new guidance has the 'potential to transform care for people with a learning disability' and cut the number of avoidable deaths.
Ms O'Sullivan said: 'After two years of waiting, we're pleased to see the Oliver McGowan mandatory training code of practice launched today.
'It has the potential to transform care for people with a learning disability and reduce the number of avoidable deaths.
'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.'