Healthcare workers to get mandatory training in autistic care after Bristol campaign
It comes nearly six years after an autistic boy from Bristol died in hospital after being given drugs he said he couldn't have
As of today (July 1) all healthcare staff in England who help treat people with autism will have to be trained on how to look after them, thanks to a tireless campaign by a Bristol family.
It's comes nearly six years after 18-year-old Oliver McGowan from Emersons Green died after being given anti-psychotic drugs in hospital, despite both he and his parents insisting he couldn't have them.
From now on all staff in health and social care settings that are registered with the Care Quality Commission, who support people with either autism or a learning disability, will have to complete training.
It's a new legal requirement introduced as part of the 2022 Health and Care Act, which has been campaigned for by Oliver's parents.
Oliver's story
Oliver developed autism, a form of epilepsy and a mild learning disability after suffering with meningitis as a baby, but as he grew up, Oliver became a very successful young athlete, playing for the England Development football squads and performing very well at a national level in the 200 metres.
At the time of his death he was being trained to hopefully become a Paralympian, at the University of Bath.
In October 2016 Oliver was admitted to Southmead Hospital having what his parents believed to be epileptic seizures.
Due to distressing and unsuccessful hospital treatment in the past, both Oliver and his parents insisted that he should not be given anti-psychotic drugs as part of his treatment, but their wishes were ignored.
The medication had a catastrophic impact, causing his brain to swell so much that he was left paralysed, unable to talk and with no understanding of language.
His parents were also told he would have no way of communicating and would need a tracheotomy to breathe, while being fed through a tube.
In a vegetative state, his life support machine was turned off a week later, on November 11, 2016.
At in inquest into his death a coroner concluded the doctor did the right thing in giving Oliver the medication, despite the fatal impact it had, but an independent review has since found his death was avoidable.
The General Medical Council and Avon and Somerset Police are both now investigating the doctor involved.
The Oliver McGowan Mandatory Training
Thanks to campaigning by Thomas and Paula McGowan, the latter of whom has been made an OBE for her efforts, healthcare staff will now have to receive mandatory training to ensure such a scenario doesn't arise again. Until now there has been no such system.
The Oliver McGowan Mandatory Training in Learning and Autism, to give it its full name, does not include training about treatments or interventions, but instead focuses on raising awareness and understanding of how to care for people with autism and learning disabilities.
It has been developed with the help of people with learning disabilities and autism as well as their families and carers and trials of the training have already been held.
We have spoken to Paula to mark the moment.
"It's hugely significant," she told us.
"For the first time in history we've got a formal programme that has actually been designed, and we are learning directly from autistic people, from learning disabled people, which is essential.
"It's essential in that Oliver's training will save lives."
According to the Office for National Statistics more than 136,000 deaths across the UK in 2019 were classed as avoidable, out of a total of more than 604,000, which works out as 22.5 per cent.
It is not known how many of those cases involved people with autism or learning difficulties, but it is thought the proportion could be high.
Paula told us what it was like knowing Oliver had been given medication against his and their will.
"Even now, five years on, I still can't believe what's happened," she said.
"After Oliver died I thought the country would be up in arms if I'm honest...and then I learned that Oliver is a statistic.
"He's one of thousands of learning disabled people that are dying from preventable deaths.
"They're dying from constipation.
"We've hearing that people with learning disabilities are having do not resuscitate orders placed on their medical folders purely because they've got a learning disability.
"The inequalities for people like Oliver are just profound. It's shocking really."
Adam Murphy from Gloucestershire is autistic himself and also has an autistic son.
We asked him about the training.
"(It's) massively positive," he said.
"At the moment there is no voice for autistic people, not widely.
"What happened to Oliver showed that.
"(It) shows that autistic people and people with learning disabilities are often thought of as second class, invisible."
Steps forwards
Both Paula and Adam say they would eventually like to see similar training rolled out in other settings, like in schools, with the police and in businesses like cinemas.
"I think what we've got to remember is that this was developed by talking to autistic people and talking to families, and that is massively important," Adam said.
"When we talk about autism training, when we see autism training, when we go to cinemas, very often the people that have been in charge, that have developed these initiatives aren't autistic.
"Well here's a thought, why don't we ask autistic people?
"Why aren't we employing them, in cinemas, in hospitals, in employment, to deliver training, to talk about what would be a good idea and what wouldn't be a good idea. Why aren't we doing that?"
Paula says her work is by no means over.
"We need Oliver's training in the police, we need it in our prisons, we need it in our education, in our schools," she said.
"It's unfair that these professionals are expected to know how to make reasonable adjustments, that they're expected to understand autistic people, learning disabled people...without the real training, without proper training.
"That's wrong isn't it and we've got to change that."