The mum of a teenager with autism and learning disabilities who died in hospital after being given the wrong medication said she was 'overwhelmed' by the response to the tragedy.
Huyton-born Paula McGowan had her whole world shaken when her son Oliver, 18, died in hospital after being given antipsychotic medication which caused severe brain swelling against his and his family's will. He died a death that would later be ruled "potentially avoidable" at Bristol Southmead Hospital on November 11, 2016.
Oliver was born in Alder Hey Children's Hospital a month early and developed bacterial meningitis at three weeks of age. Yet, by the time he was a teenager, despite further diagnoses of mild hemiplegia, focal partial epilepsy, a mild learning disability and high functioning autism, he was flourishing and had followed his love of football to the point that he was training to become a Paralympian.
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After his death his mum Paula began campaigning for medical and care staff to be given mandatory training in learning disabilities so they can treat learning-disabled patients correctly, and avoid the tragedy that hit her family. Her campaign was successful, and in 2019 a government report found there was "overwhelming support" for the training.
Since then, Paula has been working with NHS England on the Oliver McGowan Mandatory Training in Learning Disability and Autism, to ensure that staff receive the right autism and learning disability training at the right level for their role.
A trial of the training has been underway involving 8,300 health and care staff and yesterday a study announced that it had 'positive' results. Paula said she was "overwhelmed" by the "outstanding feedback" the trial had given, and that what stood out for her is that staff said "they would change their practices going forward" and "reflect" on how the training empowered them to do their job better.
Paula, who now lives in Australia and has been awarded an OBE by the Queen for her campaign, told the ECHO: "We are all responsible as human beings, as part of the United Kingdom, we all live as part of our country.
"We all have the power to accept people or whoever they are. And whoever they are, everybody has a way to be a part of this world. We all have a duty to make sure that happens.
"Every single day of my life I'm reminded that if Oliver's training had existed in 2015 and 2016, then without doubt Oliver would still be alive today. I felt so strongly when Oliver died that I had to do something.
"I had to be that person, I had to be that voice that stood up for the Oliver's of this world, because I just had to. I just had to make a difference. I had to try and change what had gone before.
"Oliver's voice, like so many others', wasn't heard when he was alive. Oliver made it very clear that he was not meant to be given those medications. Oliver was very able to articulate his needs and he was ignored.
"Now in death Oliver's voice is now being heard. It's his legacy. His voice is now making a difference to so many others. That in itself is incredibly powerful.
"The LeDeR [a Learning Disability Mortality Review] highlighted the fact that every single year we were losing 1200 people with learning disabilities due to the quality of their healthcare needs. These were all potentially avoidable deaths.
"The LeDeR showed us during the pandemic that DNR orders were being placed on people with learning disabilities simply because they had an LD, not because they had any other healthcare needs. We're talking about people with learning disabilities dying from things like constipation.
"This is why Oliver's training is so important."
The review into the trials of the training found that it led to an increase in knowledge, skills and confidence among staff in working and communicating with autistic people and people with a learning disability. At a recent stakeholder event Philipa Spencer, senior responsible officer for Health Education England said: “Today’s event is the next milestone for the Oliver McGowan Mandatory Training programme.
"These results highlight areas that have worked really well and others that can be developed further, and the trial gives us a range of evidence that will inform and shape the next steps for the training.
"It has been inspiring to read feedback from participants demonstrating how the training has had a positive impact on their understanding of learning disabilities and autism – and how they have since applied it in their day-to-day work.”
Gillian Keegan MP, minister for care and mental health, said on that same event: "It was brilliant to come together with Health Education England, Paula McGowan OBE, Dame Caroline Dinenage and hundreds of attendees to celebrate the end of the training trials.
“The Oliver McGowan Mandatory Training will help people with learning disabilities and autism get the right care at the right time. This has been a collaborative effort, and we will work together with partners to develop a training package that is taken up by the health and social care sector."
Despite the success Paula has not finished campaigning to educate on learning disabilities and autism. She said she will next try to take Oliver's training to the health and care services of Wales and Scotland, and then work on its implementation into the education and prison sectors.
