Oliver had mild cerebral palsy, partial seizures as a result of having meningitis as a baby. He also had high-functioning autism. His disabilities did not hold him back. He played for the Centre of Excellence FA England Development football squads; he was a registered athlete and was ranked third best in the country at running 200 metres.
He was a natural leader and became a prefect and member of council at School, attaining several GCSE and BTEC qualifications. He went on to attend National Star College in Cheltenham. Oliver loved life and life seemed to love him. He was incredibly popular among his peers. On 11th November 2016, aged just 18, Oliver died a horrific premature and we believe avoidable death.
In October 2016, aged 18, Oliver was admitted to an adult hospital having partial seizures. He was conscious throughout and was very scared. Accident and emergency staff were presented with Oliver’s hospital passport detailing how his autism affected him, and how to make reasonable adjustments. It also detailed intolerances to antipsychotic medications.
Oliver had said to the ambulance staff he did not want to be given antipsychotic medicine, giving a clear rationale, stating ‘they mess with my brain and make my eyes go funny’ (referring to oculogyric crisis). He said this again in the hospital to the doctors treating him. We presented letters from doctors stating Oliver’s previous reactions to off-label prescriptions of antipsychotic medications.
We told all doctors that we did not give permission to Oliver being given antipsychotic medications and these were Oliver’s wishes. Senior consultant psychiatrists had said Oliver did not have a mental health illness.
A few days later, while Oliver was intubated and in an induced coma – against Oliver’s and our strong wishes – he was given antipsychotic medication. Doctors said it was in anticipation should Oliver become anxious when sedation was stopped. Oliver never woke up: the medication caused him to develop neuroleptic malignant syndrome.
His brain swelled so badly it was bulging out of the base of his skull causing irreversible brain damage. We were told he would be paralysed, blind, with no communication or memory, tube-fed and reliant on a tracheotomy.
We were asked to turn Oliver’s life-support machines off and he died on the 11 November 2016, Armistice Day which is poignant given Oliver was a Royal Air Force child and had lived his whole life as part of the military family.
If the doctors and nurses had been trained to understand how to make reasonable adjustments for Oliver as a person with autism and a mild learning disability, they would have known how to adapt the environment to meet his needs. They would have known how to adapt their communication, using humour to settle his anxiety in a crisis, and de-escalate the situation further.
I believe that ignorance of learning disability and autism cost Oliver his life, and we must never allow this to happen again. Mencap reports that 1 in 4 doctors and nurses has never had any training on learning disability. This is unacceptable and that is why I have campaigned tirelessly for all NHS staff to receive mandatory training in autism and learning disability, launching a petition that was successfully debated in parliament for all doctors and nurses to receive training which would have saved Oliver’s life.
I now go into many different hospital trusts and universities to deliver training around Oliver’s story. I have been invited to speak at the Chief Nursing Officers Summit in March 2019 which a real honour. I have been invited back into parliament on several occasions to meet various ministers.
My work will continue in Oliver’s name in ensuring every person who has autism and or intellectual disability receive the same medical care as everybody else in society, where their voices are heard and they are placed at the centre of their care.
Paula McGowan is an award-winning campaigner who tragically lost her youngest child due to medical negligence.
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