As the National Health Service marks its 70th anniversary, a mother explains how the ‘Ask, Listen, Do’ programme demonstrates new ways of learning from the experiences of families, carers, and people with a learning disability and autism, and is critical for safety and good quality care:
In 2016 my beautiful 18-year-old son’s life was cut tragically short. He died in hospital due to a rare reaction to anti-psychotic medication.
Oliver’s untimely death shows why the principles of Ask, Listen, Do are so important.
From the moment Oliver was born, we knew that he was special and our love for him was overwhelming. Oliver was born premature and developed meningitis at three weeks of age. He was very ill and we were told they did not expect him to survive. However, Oliver began to recover.
Everybody who came into contact with Oliver warmed to him and could not resist spending time with him.
After a second episode of meningitis, amazingly against all odds and after many months of hospital treatment, Oliver’s strength and determination shone through and he survived once again – as always with that beautiful heart-warming smile that everybody was drawn to.
Oliver was left with mild cerebral palsy, focal epilepsy and later on a diagnosis of mild autism. His disabilities did not hold him back, however, and as he grew up he went on to become an outstanding athlete, much loved by all who knew him. He amazed everyone with his achievements.
But in 2016, Oliver was admitted to hospital because of seizure activity and his life was cut tragically short.
He did not have a diagnosis of mental illness but had previously been given anti-psychotic medication to control his agitation in hospital, caused by his epilepsy and autism. These anti-psychotics had caused him to have an increased number of seizures, feel physically unwell and become very agitated.
Oliver’s health deteriorated and he passed away a few weeks later due to a condition called neuroleptic malignant syndrome – a rare but serious side effect of antipsychotic medications.
We believe that if staff had been trained in understanding autism and learning disabilities, impacted by seizure activity they would have managed the situation differently.
This is why we believe the principles of Ask, Listen, Do are so important. My family and I challenge all healthcare providers to:
- ASK people with a learning disability, autism or both, their families and carers for their opinion and concerns about treatment
- LISTEN to all involved and show respect to those opinions and concerns
- DO something about it and work in partnership with us
And specifically to people who provide specialist care in learning disability and autism:
- Put people at the heart of all decision making
- Respect our point of view
- Do not make decisions without us
- Enable us to understand complex decisions in a way that is relevant to all and provide information and explanation
- Liaise with healthcare colleagues in general hospitals to raise awareness and understanding of learning disability, autism and the principles of STOMP
DO everything in your power to prevent a story like Oliver’s from having to be told again.