Oliver and Paula

Today, the NHS announced that Dr Celia Ingham Clark MBE, a clinical expert, will oversee an important further review into Oliver McGowan’s untimely and tragic death. Oliver was an autistic teenager who also had a learning disability, epilepsy and cerebral palsy. 

This announcement marks an important moment for Oliver’s family who have been campaigning to make sure the circumstances around his death are fully uncovered. 

Oliver died in October 2016, while in Southmead Hospital, after suffering a seizure following medication. Oliver’s family are very concerned that poor understanding of autism contributed to his death. 

A Learning from Deaths Review (LeDeR) is supposed to look at the circumstances that led to the death of someone with a learning disability. One was undertaken after Oliver’s death but there were significant concerns that this wasn’t robust or rigorous enough. Oliver's mother hopes this new review will give her and her family the answers they’ve been looking for. 

Unfortunately, research suggests that autistic people’s life expectancy is lower than the general population’s. This is also true for people with a learning disability, which is why the LeDeR programme was set up. But we are concerned that LeDeR only applies to deaths of people with a learning disability, and think it should be expanded to include all autistic people. 

Expanding the programme is crucial in gaining a better understanding of how we can tackle the health inequalities autistic people face across the country and ensuring they can live full and healthy lives.  

Tim Nicholls, Head of Policy at the National Autistic Society, said: "This is an important moment for Oliver's family. They have been fighting tirelessly to make sure that the circumstances of Oliver's tragic death are fully investigated so that everyone can learn from what happened. This is essential if we're going to stop the scandal of people who are autistic or have a learning disability from dying prematurely.

“Research suggests on average autistic people have much worse physical and mental health than the general public. In many cases, this is down to health professionals’ poor understanding about autism and how autistic people might react or communicate in the stress of a hospital ward. Oliver’s parents firmly believe this was a factor in their son’s death, and it could be in many others. 

“It’s right and incredibly important that Oliver’s tragic death is being properly reviewed. We also need NHS England to expand the whole LeDeR programme to cover deaths of autistic people who don’t have an accompanying learning disability. Autistic people and people with a learning disability face many of the same barriers getting the right healthcare. 

“But the LeDeR programme only currently reviews the deaths of people with a learning disability. Without expanding the programme, the NHS won’t learn from its mistakes when it comes to autistic people - and the unacceptable health inequality they face won’t be tackled."