She watched her 18-year-old son Oliver’s brain become so swollen it began to come out of the base of his skull after he suffered an allergic reaction to an antipsychotic. But since losing Oliver in 2016 Paula McGowan has used her grief and anger to fight for much needed changes for people with learning disabilities and autism. Darren Devine reports.
When Paula McGowan thinks of her son Oliver now she imagines him at 25-years-old as a young man with his whole life ahead of him — a football coach with a girlfriend pursuing his passion for iron work.
But she struggles to focus on these thoughts because the reality of her son’s death at Bristol’s Southmead Hospital kicks in. The tubes cluttered everywhere and her son’s pain as his life ebbed away. These are the moments that come flooding back for mother-of-three McGowan and husband Tom.
“When you lose a child, time stands still. Tom and I deal with the loss of Oliver by talking about him, he remains and will always remain a part of our life. I continue to say that I am the mother to three children. Two live in different places in England and one lives in heaven,” she says.
Following Oliver’s death, McGowan began a long fight to improve medics’ understanding of the needs of the people with autism and learning disabilities they treat.
Oliver, who had a learning disability, autism, epilepsy and cerebral palsy, was trialled on an antipsychotic a year before his death and reacted badly. Yet, when he was admitted to hospital with seizures, he was given antipsychotic medication again against his and his family’s wishes. This was also despite him not having a mental illness or psychosis.
An independent learning disability and mortality review (LeDeR) into his death found it was avoidable and key warnings from Oliver, his medical notes and family were ignored.
The review suggested with a better understanding of autism and learning disability, medics could have made simple and reasonable adjustments that might have saved his life.
His parents made the heartbreaking decision to turn off their son’s life support after being told he would never walk again, be blind and have no memories or language.
The mother’s campaigning work has seen the introduction of the Oliver McGowan mandatory training on learning disability and autism. The training is now being rolled out throughout the NHS and McGowan’s tireless efforts mean her success has not just been confined to these shores.
She says Jersey’s largest learning disability charity, Les Amis, have put all their staff through tier one of the training and plan to complete it in full. And McGowan said she has also met politicians in Ireland who are serious about rolling out Oliver’s training there.
In line with the “nothing about us, without us” ethos that underpins it, people with autism and learning disabilities had a hand in the design of the training and have helped to deliver it.
McGowan, 58, who with engineer husband Tom, 56, lives between New South Wales, in Australia, and Bristol, in the UK, has seen her health suffer following her years of campaigning after Oliver’s death.
She recently completed a year of cancer treatment after being diagnosed with stage three melanoma and is continuing to have quarterly scans to monitor her health.
McGowan, who was awarded the OBE in 2021 for her work for people with autism and learning disabilities, has been told there is a “high risk” the cancer will return. The primary school teacher, who after a full day’s work is often up until midnight with her campaigning efforts, says she has “no doubt” the demands she has made on herself have impacted her health.
But she says she tries to achieve some balance by eating healthily and walking in the countryside.
McGowan is now focused on getting Oliver’s training rolled out to as many health boards as possible and across all organisations that watchdog the Care Quality Commission (CQC) oversees.
While some health bodies have made “excellent progress” in rolling out the training, others are taking “far too long”, she has said.
“This is not acceptable and quite frankly inexcusable, especially when we know that learning disabled and or autistic people are continuing to experience poor health and care outcomes with far too many dying prematurely,” she adds.
McGowan fears some health boards are waiting for a code of practice to be published that will accompany the legislation that introduced Oliver’s training before committing time to upskilling their staff.
The Oliver McGowan draft code of practice consultation was launched in July 2023 and ran until 19 September 2023. This consultation considered the extent to which the Oliver McGowan code of practice on statutory learning disability and autism training (the code) provides Care Quality Commission (CQC) registered providers with the necessary guidance to meet the legislative requirement introduced by section 181 of the Health and Care Act 2022. The feedback gathered from this consultation will inform the final version of the code to be laid in Parliament.
Each year King’s College London produces the LeDeR report into the avoidable deaths of people with learning disabilities. Published in November, the most recent report suggested that while some progress has been made with “gentle” improvements in life expectancy, “work still needs to be done”.
The median or mid-range age of death for people with learning disabilities rose from 61.8 years in 2018 to 62.9 in 2022.
Speaking last November Professor Irene Tuffrey-Wijne, who helped produce the report, said it was important not to “sugar-coat the stark truth that people with learning disabilities still die several decades earlier than the general population, and that many of these deaths are avoidable”.
Despite this McGowan remains optimistic that Oliver’s training can deliver a “real and enduring change in attitudes” and help to erode the health inequalities that see decades wiped off the life expectancy of the learning disabled.
She adds: “We have to remember that Oliver’s training cannot solve all the awful things that continue to happen to our learning disabled and or autistic communities. It is about awareness, acceptance, understanding, communication, reasonable adjustments, self-evaluation, unconscious bias, prejudice and the law.”
She said health professionals who complete the training tell her it has made them think about their own “unconscious bias” and how “they will change their practices”.
In a statement, a spokesperson for the Department for Health and Social Care (DHSC) said they introduced mandatory training in autism and learning disabilities to ensure people get personalised care.
“We are rolling out the Oliver McGowan mandatory training to support this and over 1.4 million people have completed the first part of this training,” added the spokesperson.
