Our Inspirational Son, Oliver

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 go back 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. At home, Oliver was receiving excellent care from the learning disability team, which offered a multi-disciplinary approach in the way they supported him.

However, 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.

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 seen Oliver'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.  Accordingly, 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 – the learning disability psychiatrist and psychologist who supported Oliver at home. 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.

Of course, though my campaign focuses on healthcare staff, good quality training for other care and support staff, including those working in housing settings, is also critical.  Equally, it is essential that healthcare staff understand the importance of taking an integrated approach - consulting with and listening to not only the person themselves, and their family and loved ones, but also the support workers and community professionals who play such an important role in enabling people to live well in their everyday lives.

I am calling for doctors and nurses to receive mandatory training in autism and learning disability awareness so they can treat patients effectively and correctly - as they want to be able to do.

Please sign my petition here.