“An avoidable death” by Oliver’s father

Oliver’s disabilities did not hold him back. He had a can do attitude and amazed everybody with his achievements. He was a registered athlete with the Power of 10 British Athletics initiative and was ranked 3rd best in the country at running 200 metres. Oliver was a member of Team Bath and was being trained to become a Para Olympian.

Oliver competing in Blackpool - 9 December 2011

He played for the South West and North West Centre of Excellence FA cerebral palsy England Development football squads.

Oliver with Martin Keown St George's Park, national football centre – 28 October 2013

He was a natural leader and became a prefect and member of council at School and college. He attained several GCSE and BTEC qualifications. He went on to attend National Star College in Cheltenham. Their opinions of Oliver were very complimentary, writing how friendly and kind he was, supporting students who were less able than himself, his wicked sense of humour, and the aspirations they had for him to start a sports course at a local ski centre. Oliver loved life and life seemed to love him. He was incredibly popular amongst his peers. He had a strong following of over 7,000 people on social media due to his blogging. On 11 November 2016, aged just 18, Oliver died a premature and we believe an avoidable death. We are campaigning for the events that led to Oliver’s death to be recognised and make changes in law to prevent a reoccurrence for others.

Oliver had mild Cerebral palsy, partial seizures and a mild learning disability as a result of having meningitis as a baby. Also he had high functioning Autism. His additional needs were not obvious, but anxiety was a challenge for him. When Oliver turned 17 his seizures increased and on several occasions he had to spend time in hospital. His seizures caused him to become anxious, scared and frightened. This in turn would cause Oliver’s normal Autistic behaviours to become heightened. Oliver had not been diagnosed with having a mental illness, but had previously been given antipsychotic medication to control his anxiety when in seizure. However, antipsychotics caused a significant increase in seizures, and to feel physically and mentally unwell. Consultant psychiatrists in hospital and the community had written that Oliver was sensitive to antipsychotic and benzodiazepine medications due to his previous reactions to them.

In October 2016, aged 18, Oliver was admitted to an adult hospital having partial seizures. He was conscious throughout and was very scared and anxious. A&E staff were presented with Oliver's Hospital Passport detailing how his Autism and learning disability affected him, and how to make reasonable adjustments. It also detailed his sensitivities and intolerances to antipsychotic medications. This was not read or acted on and was placed in a drawer without a further glance.

Several doctors were talking to Oliver at once, using complex language that was hard to understand. When Oliver wanted to walk around (what he normally done as part of his seizures) he was physically restrained. At one point, during a seizure, he was thrown back onto the bed by a police officer that heightened his anxiety greatly.

Oliver had said to the ambulance staff he did not want to be given antipsychotic medicine, giving a clear rationale, stating they messed with my brain and make my eyes go funny, referring to Oculogyric Crisis he had previously experienced.

Oliver in Oculogyric Crisis, Bristol Children’s Hospital – May 2016

He said this again in the hospital to the doctors treating him. We presented letters from doctors stating Oliver’s previous reactions to antipsychotic medications. We told all doctors that we did not give permission for Oliver to be prescribed antipsychotic medications and these were also Oliver’s wishes. Previously, 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 when prescribed these medications. We also knew that Oliver was not psychotic or mentally ill. The doctors in A&E wrote "antipsychotic medication" in red in the allergies box on all of Oliver's ICU patient 24 hour care charts. A neurologist in A&E also wrote an email to all doctors treating Oliver, on the day of admission, that he was intolerant to all forms of antipsychotic medications.

Oliver was sedated and intubated in A&E to investigate his seizures. A few days later, against Oliver's and our expressed wishes he was given the antipsychotic drug, called Olanzapine. Doctors said it was in anticipation should Oliver become anxious when sedation was withheld. Oliver never woke up; the Olanzapine caused him to develop Neuroleptic Malignant Syndrome (NMS). His brain swelled so badly it was bulging out of the base of his skull causing irreversible brain damage. We pointed out to the doctors that his appearance was swollen but this was dismissed.

Oliver, Southmead Hospital - 30 October 2016

We were told he would be paralysed, blind, 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, poignant given Oliver had lived his life as a Royal Air Force Child due to me serving in the Air Force.

Oliver, Southmead Hospital - 9 November 2016

If the doctors and nurses had been trained to understand how to make reasonable adjustments for Oliver (someone with Autism and a mild learning disability), they would have known how to adapt the environment to meet his needs. Therefore, there would have been no need to use a “chemical restraint” and he would not have had the NMS reaction to this type of medication.

If doctors and nurses would have had the training to support Oliver's social and emotional needs effectively they would have known how to adapt their communication, using humour to settle his anxiety in a crisis, and de-escalate the situation. They made a decision about how to manage potentially challenging behaviour as Oliver came out of sedation. They did not properly explore alternatives to pharmacological intervention (antipsychotic medication). There was time to do this; he was sedated and in a stable condition in an Intensive Care Unit. We requested that the doctors consult with other professionals who knew Oliver best and were treating him in the community. This did not happen although there was time.

I believe that the doctors treating Oliver were arrogant and ignorant of learning disability and Autism which ultimately led to Oliver losing his life. We must never allow this to happen again. Oliver’s death is not an isolated case with evidence in relation to learning disability showing 1,200 avoidable deaths every year, and women with a learning disability dying nearly 30 years earlier than the general population. Mencap’s Death by Indifference report, published in 2007, set out many areas of concern behind avoidable deaths. This was updated in 2012 in the Death by indifference: 74 deaths and counting progress report 5 years on. These reports then led to the Confidential Inquiry into the deaths of people with learning disabilities (CIPOLD) published in 2013 and reviewed the deaths of 247 people with learning disabilities within 5 Primary Care Trusts in the South West of England. One of the key recommendations of CIPOLD was the establishment of a national learning disability mortality review. Therefore, a Learning Disabilities Mortality Review (LeDeR) Programme was established is managed by the Norah Fry Research Centre at the University of Bristol, under contract to the Healthcare Quality Improvement Partnership (HQIP).

Mencap's Treat me well campaign report states that 1 in 4 doctors and nurses has never had any training on learning disability. This was our experience and it is unacceptable, that's why my wife and I launched a UK Government petition to prevent avoidable deaths by making autism/learning disability training mandatory for all doctors and nurses to receive appropriate mandatory training.

There needs to be a culture change in the way people with Autism and a learning disability are treated by NHS doctors and nurses. This needs to be led from the top down. It is not acceptable that people who have autism and learning disabilities die for no other reasons than their health care needs are not being met. We must do collectively do everything in our power to prevent future deaths like Oliver’s from happening again. Please like and share this web page to gain maximum publicity and support for Oliver’s campaign.

Oliver and me at Wembley watching England - 7 September 2013