Paula McGowan OBE has become an ambassador for Epilepsy Action.
Paula is an award-winning activist who has dedicated her life to campaigning for the equality and equity of health and social care for intellectually disabled and/or autistic people.
Following the preventable death of her teenage son Oliver, Paula and her family set up Oliver’s Campaign.
As part of the campaign, Paula successfully launched a parliamentary petition that meant health and social care staff in England now receive mandatory training in learning disability and autism awareness.
On 28 April 2022, learning disability and autism training became law and reached royal assent. The Oliver McGowan Mandatory Training has been designed, evaluated and is delivered alongside learning disabled and/or autistic people to meet this law.
“The family became aware of Epilepsy Action after Oliver died,” said Paula, “which led to my husband and daughter running the half marathon in Bristol for Epilepsy Action. We felt we wanted to support a charity who can, and is, making a difference for our communities.”
Oliver had epilepsy, autism and a mild intellectual disability, which the family said led to diagnostic overshadowing.
Paula said: “Oliver’s seizures were poorly understood by health, care and education staff. Oliver had simple focal seizures. He would remain conscious throughout his seizures, which caused him to be scared, anxious and confused. This behaviour, which we believe most people would display while having a seizure like Oliver’s, led to hospital staff administering antipsychotic medication. Oliver was not mentally unwell or psychotic.”
“Clinicians did not understand that the behaviours Oliver was displaying were typical of when he was having a seizure. This led to Oliver’s avoidable death at just 18.”
She added: “Oliver explained to me one day what a seizure for him felt like, saying ‘that it was like having thousands of wasps constantly buzzing around inside your head and you can’t make it stop. It’s horrible, I have to go to college and do my work while having these seizures’.”
Oliver was part of the England development football squad and training to become a Paralympian.
“Oliver had incredible insight into his own epilepsy and how it affected him,” said Paula. “He did not want others to see him as different, he wanted to be seen the same as his friends.”
In June 2021, Paula received an OBE in recognition of her outstanding service to people with autism and intellectual disabilities. She now lives in Australia, and in September 2020 she was invited to speak as a witness for the Australian Royal Commission.
Paula is also a patron and ambassador for several charities and organisations including Health Education England, NHS England, South London and Maudsley NHS Foundation Trust, Anna Kennedy Online, DanceSyndrome, Crossroads Caring for Carers and now Epilepsy Action.
In May 2023, she was awarded an honorary fellowship at the University of Plymouth. She is also a member of CIDER – Cornwall Intellectual Disability Equitable Research.
As well as campaigning, Paula is an early-years school teacher. She specialises in working with children who have additional needs, particularly those who are neurodivergent. She said she would like to see schools better educated on seizure awareness.
“I would like to see more information given to parents whose children are diagnosed with epilepsy,” she said. “Our schools need training on understanding seizures, especially seizures that are less common. I would like to see training being designed and delivered alongside people who experience seizures. It is essential that we learn about epilepsy, directly from those who have epilepsy.”
Paula is now working to get an adapted version of the Oliver McGowan Mandatory Training across education settings. In November 2023, Paula had her petition successfully debated in parliament.
Speaking about what she wants to achieve with Epilepsy Action, Paula said: “As a charity, it is what Epilepsy Action does best – raising awareness, education, improving and saving lives. It is about making a difference for everyone who has epilepsy, their families and carers. I would like the charity to be more visible and accessible to the public and all professional services.”
She added that she would like to see epilepsy charities working together in collaboration. She said: “Working together would strengthen resource, awareness and education – ultimately improving and saving lives.”