This is a blog post shared to us by Paul McGowan about her son Oliver. We feel that it is vital to share so that we can continue to prevent the premature and avoidable deaths of people with learning disabilities.
-Oliver had a brilliant life. He enjoyed college, playing football and was an amazing athlete, in training to become a Paralympian. Oliver was fun and laughed a lot. He loved life and being with his family. He was very bright achieving GCSE and BTEC examinations. But on 11 November 2016, aged 18, he died in hospital care. We never imagined this could happen. When we had taken him to Accident and Emergency we thought he would be in hospital for a couple of days at the most, and he would be able to go to college the following week, as planned.
As a result of meningitis as a baby, Oliver had mild cerebral palsy, partial seizures and a mild learning disability. He had high functioning autism too. His additional needs were not obvious but anxiety was a challenge for him.
In hospital, Oliver did not get the ‘reasonable adjustments’ he needed. That’s why I’ve launched a Government petition so all doctors and nurses get the mandatory training which could have saved Oliver’s life.
When Oliver turned 17, his seizures increased and he had to spend some time in hospital on several occasions. His seizures caused him to become anxious, scared and agitated. His autism became magnified.
In October 2016, when he was 18, Oliver was admitted into an adult hospital having partial seizures. He was conscious throughout and was very scared and distressed. I gave staff Oliver’s Hospital Passport detailing how his autism and learning disability affected him, and how to make reasonable adjustments. This was placed in a drawer without a glance.
Several doctors were talking to Oliver at once and using language that the most educated person would have a problem understanding. When Oliver wanted to walk around (a normal part of his seizure activity) he was restrained, which heightened his anxiety.
Oliver had said in the ambulance he did not want to be given antipsychotic medicine. He said this again in the hospital, as did we. When on this medication in the past we had seenOliver’s behaviour change in a way we had never seen before – hallucinating, tearing at his skin with significant increase in seizure activity. We also knew Oliver was not psychotic or mentally ill. Previous senior consultants had said the same thing. The doctors in A&E wrote ‘Antipsychotic medication’ in red in the Allergies box on all of Oliver’s ICU patient 24hr care charts.
Oliver was eventually sedated. A few days later,against Oliver’s and our wishes he was given the antipsychotic drug, Olanzapine. Doctors said it was to control his behaviours when he woke up. Oliver did not normally display challenging behaviour; he was a very calm mellow person. Sadly, Oliver never woke up; the Olanzapine caused him to develop Neuroleptic Malignant Syndrome. His brain swelled so badly it was bulging out the base of his skull and he died.
If doctors and nurses were trained to understand how to make reasonable adjustments for him as someone with autism and a learning disability, they would have known how to adapt the environment to meet Oliver’s needs. They would have had the training to support Oliver’s medical, social and emotional needs effectively. They would have known how important it was to adapt their communication, like using humour to settle his anxiety when in crisis, and stop it escalating further.
When doctors were making the decision about how to manage potentially challenging behaviour as Oliver came out of sedation, they should have properly explored alternatives to using antipsychotic medication. There was time to do this, and to consult with the professionals in the community who knew Oliver best. But these things didn’t happen.
I truly believe that ignorance of learning disability and autism cost Oliver his life and we must never allow this to happen to another person like him. Mencap’s Treat me well campaign report says 1 in 4 doctors and nurses has never received learning disability training. This is unacceptable. Help me to help our doctors and nurses to receive mandatory training in autism and learning disability awareness so they have the ability to treat patients effectively and correctly as they want to be able to.
Please sign my petition here: https://petition.parliament.uk/petitions/221033