Oliver McGowan’s legacy: mandatory training to end preventable deaths
My teenage son Oliver was a bright, healthy, fit young person. He represented England at football, was a registered athlete training to become a Paralympian and ranked third best in the country for 200 metres. He passed his GCSEs and was a school prefect. Oliver loved life and life seemed to love Oliver.
As a result of bacterial meningitis as a baby, Oliver had suffered a stroke that resulted in him having high-functioning autism, a mild learning disability and focal partial epilepsy.
Shockingly, Oliver died aged 18 in Southmead hospital in Bristol in 2016, after being prescribed olanzapine, an antipsychotic medication.
We had repeatedly told doctors he should not be given olanzapine because he was intolerant and sensitive to all antipsychotics.
More importantly, it had been confirmed in writing from previous doctors that Oliver did not have a mental health diagnosis.
Nevertheless, he was given the medication against his and our wishes and died as a result. The drug caused Oliver’s brain to swell so badly it was coming out the base of his skull.
At the inquiry into his death, when the doctor was asked why no reasonable adjustments had been made for Oliver’s treatment in the light of his autism, it became evident that he had no idea what this meant. This information struck me like a sledgehammer – he clearly had little understanding of autism and learning disability and, from research, it became evident that many doctors and nurses were similarly untrained.
I resolved to do something to ensure others would not suffer the same fate. I was determined to try to prevent people with learning disabilities dying prematurely because their most basic needs were not understood.
There have been more than 1,200 premature and preventable deaths of people with learning disabilities in England because their healthcare needs were not met – a diabolical example of health inequality.
Over the last year, I have been working with the Department of Health and Social Care, sometimes for more than 13 hours a day, to establish training in learning disability and autism for all health and social care workers, including doctors and nurses. This followed a petition to parliament signed by 52,000 people demanding compulsory training, which received cross-party support.
In November 2019, it was announced that mandatory training would be introduced, with £1.4 million to develop and test it. I was determined that the training would be mandatory and include a standard quality framework for all staff. It will be based on case studies showing exactly why such training is needed.
Caroline Dinenage, minister of state at the department, has been as passionate as myself about this training and has been a constant support.
On a personal level, it is very important to me that the training will be named after Oliver. Everybody who does it will see his face and name, which personalises and adds real meaning to it. I hope his legacy will be to challenge subconscious bias and ensure real change.
No training is perfect but my hope is that it will be impactful, prompting professionals to take ownership when things go wrong and to treat people with learning disabilities and people with autism as equal humans.
Paula McGowan Activist and winner of Bloody Awesome Parents and Autism Hero Awards, by email
Whose term is it anyway?
Does terminology matter? I think it does. Community Living has adopted “learning disability” rather than “learning difficulty”, and “Down syndrome” rather than “Down’s syndrome”.
In the early days of deliberation over “disability” or “difficulty”, research by Jeannie Sutcliffe, a pioneer supporter of self-advocacy, into the views of people themselves showed that the great majority favoured difficulty. The rationale was that disability implies you cannot do things, whereas difficulty implies you can with sufficient help. A few people preferred disability because it linked with the wider disability movement, but this was very much a minority view.
However, the term learning disability was strongly promoted by the government in its publications and pronouncements, and this eventually defeated the original wishes of the people themselves, who have now been made to accept the term.
I think that Down rather than Down’s syndrome is also misguided. Other conditions are referred to with an apostrophe – Alzheimer’s, Parkinson’s and Asperger’s, for example – so is there any reason for change?
The move to Down has been led by a section of the medical profession, especially in the US, but have any of the people themselves or their families expressed a preference for Down?
The word down is often used negatively, as is demonstrated by terms such as down and out, downhearted and down in the dumps. Sometimes a negative word can be rehabilitated by the people themselves, but I know of no efforts to do this by people with Down’s syndrome or their families. The Down’s Syndrome Association in the UK still uses the apostrophe.
What do other readers of Community Living think?
Paul Williams
Trowbridge, Wiltshire
