Tough beginnings for campaign

Paula McGowan and husband Tom raised three children in England before migrating to Australia in 2018. Their move followed the death of their youngest son Oliver, two years before, at just 18 years of age. Paula successfully launched a parliamentary petition in England and as a direct consequence the British government announced the Oliver McGowan Mandatory Training in Learning Disability and Autism program for doctors and nurses.

Below, Paula reflects on Oliver’s legacy.

Oliver was born a month premature and at three weeks of age developed bacterial meningitis. Doctors did not expect him to survive. Everybody who came into contact with Oliver warmed to him – there was something about him that drew people in, and this lasted throughout his life.

Sadly, Oliver developed a second episode of meningitis and was again incredibly ill. Against all odds, and after many months of treatment, his determination prevailed and once again he survived. Oliver was left with mild hemiplegia, focal partial epilepsy, a mild learning disability and later on, was diagnosed with high functioning autism. Oliver’s disabilities did not hold him back and his achievements amazed everyone. He played for England Development football squads, and as a registered athlete ranked third in England for track 200 metres. Team Bath was training him to become a Paralympian.

A natural leader, he was elected school prefect. He attended National Star College in Cheltenham, which spoke of his friendly nature, kind disposition, and support of students less able than himself.

Oliver brought much happiness and fun to our lives. He always saw the best in everything and taught all of us how to look at things differently. He never failed to light up a room with his laughter. And he never complained. He accepted everything and always with a smile. His courage and enthusiasm were inspirational. A neurologist told us Oliver had a full life expectancy and would do so independently with a little support.

In October 2015, Oliver was admitted to a children’s hospital, having what we and his teachers recognised as simple partial focal seizures. They caused him to be scared and confused. After weeks of tests Oliver was discharged home on antidepressant medication to treat anxiety. We were surprised as Oliver was not depressed. He loved life.

Once this medication was increased, it caused a change to Oliver’s mood and escalated his seizures. As a result, in December 2015, he was admitted to the same hospital, but this time was given antipsychotic medications. Oliver did not have a diagnosis of psychosis or a mental illness. We strongly believed that doctors were misunderstanding Oliver’s normal autistic behaviours.

The effect on Oliver was catastrophic. Oliver’s seizure threshold and agitation deteriorated. We were terrified at the sudden changes in Oliver who was eventually held against his will under the Mental Health Act. We challenged this on numerous occasions, stating we felt it was the drugs that were causing the changes to Oliver’s mood and increase of seizures.

A psychiatric bed could not be found, and doctors removed the antipsychotic medications. Within days Oliver’s mood and seizure activity returned to normal and he was discharged into our care. The discharging consultant psychiatrist wrote Oliver was sensitive to antipsychotic medications.

In April 2016, following partial seizures, Oliver was readmitted to the same hospital. Unbelievably, he was again given antipsychotic medications. Lessons from his previous admission had not been learnt. We walked into Oliver’s room one day and found him having an oculogyric crisis, a serious dystonic side effect causing his eyes to roll upwards. He was left like this for six hours as the doctor at first believed it was behavioural. Procyclidine had to be administered to counteract this reaction.

Again, Oliver’s mood changed significantly. He was hallucinating, having up to 30 seizures a day, experiencing problems urinating, and had extreme high blood pressure, all of which may well have been linked to his medication. We strongly believed the drugs were the cause of decline in Oliver’s mood difficulties. It was obvious the doctors and nurses had little to no understanding of autism and how autistic behaviours could present in a person with ongoing seizure.

When in seizure, Oliver was always fully conscious and because he had no control of them, they caused him to be frustrated and scared. He explained to me one day that it was “like having thousands of wasps constantly buzzing around inside your head and you can’t make it stop”. A neuropsychiatrist specialising in autism and epilepsy wrote that he had never come across any other patient like Oliver who had so much insight into his own condition.

At my request, Oliver was transferred to a specialist adult hospital, which I thought would better understand his epilepsy. But it was intolerant of Oliver’s autistic and learning-disabled behaviours, had no understanding of sensory crisis or overload, and refused to take any direction from us or the learning disability nurse. Sadly, the use of physical restraint was increased, with up to eight staff involved. Three staff members surrounded his bed, and he was kept in a darkened room. He told me it was frightening.

Oliver was again given different antipsychotic medications and consequently detained against his will for assessment and transferred to a specialist mental health paediatric intensive care hospital.

The different approach from skilled staff allowed Oliver to improve almost instantly. Doctors and staff from the unit said Oliver was not psychotic or mentally ill and that his placement there was a total misuse of the Mental Health Act. They reduced all antipsychotic medications and Oliver was discharged into the care of a specialist learning disability team, again with a letter saying he was sensitive to antipsychotics and benzodiazepine medications.

The community learning disability team was supportive and specialised in autism and learning disabilities. The community consultant psychiatrist wrote that Oliver was not psychotic or mentally ill. He believed Oliver’s behaviours were a result of autism, a mild learning disability and a busy environment that was not adapted to meet his needs.

In October 2016, Oliver had a cluster of partial seizures and was admitted to a different general hospital. We provided supporting letters stating Oliver’s previous reaction to antipsychotic medications. It was written in bold red ink on Oliver’s medical care and drug charts that he was intolerant to all antipsychotic medications. The neurologist treating Oliver in A&E also emailed all doctors treating him.

Oliver was intubated but later developed pneumonia. The safeguarding officer consulted on how to manage Oliver’s anxiety when sedation was reduced advised a non-pharmaceutical approach with soft handcuffs and that his parents should be present as we would be able to reassure and comfort him. This advice was ignored. Sedation was reduced without our presence. Oliver would have felt scared waking with tubes in his throat and in unfamiliar surroundings without familiar faces.

A neuropsychiatrist who had met Oliver for two, 10-minute appointments, asked us about giving Oliver an antipsychotic medication. We made it very clear she did not have our permission. Oliver had also made an advance verbal decision to ambulance staff and doctors in A&E that he did not want to be given antipsychotic medications. He said, “they mess with my brain, and make my eyes roll up”. He had capacity to remember the dystonic reaction he had incurred at the children’s hospital several months earlier.

Despite this, Oliver was given an antipsychotic medication. Over the next few days he developed a temperature of 42°. Doctors said his liver function was elevated and he was not given any medication to control the temperature other than a blow-up mattress filled with cold air. This was not effective.

Doctors could not understand the decline in Oliver’s condition as his pneumonia was improving and requiring far less oxygen. Oliver was now having tonic clonic seizures despite heavy sedation and paralysis drugs. This worried us because Oliver normally didn’t have these types of seizures. We begged doctors to scan his brain, explaining that Oliver could not afford any further damage to it. They told us they were not concerned.

Two days later, doctors sent Oliver for an emergency MRI scan of his brain as one of his pupils was very slow to react. When Oliver returned, we instantly saw the worried expression on the ICU consultant’s face. Oliver’s brain was so badly swollen it was bulging at the base of his skull. The neurosurgeons and emergency doctors suspected neuroleptic malignant syndrome, a serious side-effect of antipsychotic medications.

Oliver’s brain was now so badly damaged we were told he would be profoundly disabled, have no speech, no understanding of language, and no way of communicating. He would be reliant on a tracheotomy and would be tube-fed for the rest of his life. Oliver was now paralysed. The dreams he once had of representing his country in athletics or football were stolen from him. That beautiful smile, sense of humour and words of wisdom were now gone forever. A week later we made the difficult decision to turn off Oliver’s life support machines.

His once promising life was wasted due to several doctors not communicating effectively with family and other practitioners who knew him well. Oliver’s death was entirely preventable. We have started the Oliver’s Campaign foundation with a firm belief that people with a learning disability, autism or both, and their families and carers, should be consulted on treatments. It is essential that healthcare workers are educated in autism and learning disabilities.

Paula McGowan is a learning support officer at St Francis Xavier’s Primary School in Belmont. As a result of her tireless advocacy for people with autism and intellectual disabilities, she was recently appointed Officer of the Order of the British Empire (OBE). While celebrating the bittersweet accolade with the St Francis Xavier’s Primary School community, Paula announced OBE should stand for “Oliver Behind Everything”.


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