Bereaved mum calls for mandatory learning disability training

A mum of an 18-year-old who died in hospital after a reaction to anti-psychotic drugs, has called for all health professionals to be given mandatory learning disability training.

Oliver McGowan had a mild learning disability and high functioning autism. He died in Southmead Hospital in Bristol on 11 November 2016 after being administered anti-psychotic medication. This was in spite of Oliver and his family repeatedly telling hospital staff not to give him anti-psychotic drugs due to reactions in the past and having never been diagnosed with a mental health condition.

Oliver had been admitted to Southmead in October 2016 after having a seizure that continued despite being administered his normal medicine.

On 30 October a scan found he had neuroleptic malignant syndrome, from a reaction to the antipsychotic drugs. He had surgery in an attempt to alleviate swelling in his brain but he continued to deteriorate and the family agreed to life support being withdrawn.

His mother Paula McGowan, said: “I believe his death could have been prevented if his doctors and nurses had received mandatory training. He had autism and a mild learning disability, and they weren't trained to understand how to make reasonable adjustments for him.”

An inquest was held into Oliver’s death in April 2018, with the coroner finding that Oliver died after being given Olanzapine (used to treat schizophrenia and bipolar disorder) and contracting neuroleptic malignant syndrome (NMS) - a rare side-effect of the drug.

The coroner concluded the drug had been properly prescribed, and that it could not have been predicted that Oliver would develop NMS.

The recent Learning Disability Mortality Review found people with a learning disability were dying on average 22.8 years earlier for males and 29.3 for females. Research published by Mencap found that nearly a quarter (23 per cent) of healthcare professionals have never attended training on meeting the needs of patients with a learning disability.

'We never imagined this could happen'

Paula McGowan said: “Oliver had a brilliant life. He enjoyed college, playing football and was an amazing athlete, training to become a Paralympian. He had his whole life ahead of him that could have led to amazing things. But this was cut short when he died aged just 18 in hospital care. We never imagined this could happen.

“Since Oliver died we have discovered the huge scandal of poor healthcare for patients with a learning disability. The doctors who dealt with Oliver did not understand his needs, they ignored our warnings about anti-psychotic medication and in the end his brain swelled so badly it was bulging out the base of his skull and he died.”

She added: “There are things the health professionals could have done differently but none of them seemed to know about how to support patients with a learning disability and/or autism. What he needed was one person to speak to him at a time, giving him some space instead of several people crowding him, reassurance, humour would have helped, but most importantly listening to Oliver and ourselves as we knew him best.

“We were appalled to learn that so many doctors and nurses have never had training on learning and or autism disability. We firmly believe this is contributing to avoidable deaths and we are not alone in this thinking, many doctors and nurses are supporting Oliver’s petition.”

Lack of learning disability training

Jan Tregelles, chief executive at the learning disability charity Mencap, is urging people to sign Paula's petition.

She said: “Mencap’s research revealed that almost a quarter (23 per cent) of healthcare professionals have never received training on learning disability, and that almost half think this is contributing to avoidable deaths. Estimates suggest three people with a learning disability die avoidably every day. This cannot continue.

“No health professional should be allowed to step foot in a hospital without having had training on providing healthcare to people with a learning disability.”

Over 27,000 people have already signed the petition which can be found at: https://petition.parliament.uk/petitions/221033