Paula and Tom McGowan have three children, following the untimely death of her youngest son, Oliver Paul has dedicated her life to campaigning to better health and care for people who have autism and learning disabilities.
Her campaign so far has saw mentions on national news, in the House of Commons and Lords and in mandatory training being introduced for all doctor and nursing staff.
Oliver McGowan was born premature and developed meningitis at three weeks old, while he was not expected to live, he began to recover. After a second episode which resulted in many months of hospital treatment Oliver survived again. He was left with a mild cerebral palsy, focal epilepsy and a diagnosis of mild autism.
Growing up Oliver did not let his disabilities hold him back and was an outstanding athlete. He was well known and loved in his local area, making the most of life. In 2016, when he was 18 years old Oliver was admitted to hospital for seizure activity. It was here that his life was tragically cut short.
When admitted to hospital he was agitated due to the seizures and his autism. The hospital issued him anti-psychotic medicine. The family felt Oliver was scared and confused and did not have a mental illness. Oliver was held under the Mental Health Act for an assessment despite a challenge from the family who felt it was the drugs increasing his seizures and making him more agitated.
The medicine increased his seizures and made him feel very unwell and more agitated. He began hallucinating, sweating, having problems urinating, and his mood declined. Oliver himself was able to tell doctors the medication messed with his brain and eyes. Anti-psychotics continued to be issued despite the family making it clear they did not have theirs or Oliver’s permission to continue.
Oliver’s health quickly deteriorated and he became paralysed with no speech, ability to speak, eat or look after himself. He was put on life support and passed away soon after from a condition called ‘neuroleptic malignant syndrome’ a side effect from anti-psychotic medicines. It caused permanent brain damage,
Oliver’s family rightly believe that i staff had been trained in understanding autism, learning disabilities and epilepsy, they would have managed his situation much more differently. For this reason the family have asked for the principles of ‘Ask, Listen, Do’ to be considered in all treatment.
- Ask – to ask people with learning disabilities and autism or their families/carers for their opinnions on treatment and care
- Listen – to everyone involved and show respect to concerns raised even if it means a clinical review
- Do – something about it and work in partnership with the patient.
Oliver’s campaign want people to be put at the heart of all decision making, for decisions to no be made without the patient wherever possible, to raise awareness and understanding of learning disabilities and autism and to follow the principles of STOMP (stopping the over medication of people with a learning disability or autism).
Work from families like Oliver’s helped strengthen the Autism Act,
They are now focussed upon ensuing the review of medicines for people with learning disabilities and autism goes ahead, to ensure people are not being over-prescribed. Paul and Tom continue to share the story of Oliver to healthcare professionals in training, carer teams and those interested in special needs and autism.
They continue to press for reasonable adjustments to be made for people with autism and learning disabilities, from dimming the lights and speaking to the individual to having a quiet room, a better idea of waiting times and speaking in normal, not over exaggerated tones.
You can follow Oliver’s Campaign, get involved and learn more about their successes at https://www.olivermcgowan.org/