Peter Doody: Coroner's Epilepsy concerns after sudden death of young Brighouse musician

Peter Doody, who was a student at Brighouse High School and Leeds College of Music and worked at computer repair firm FYL Direct on Commercial Street in Brighouse, was just 21 when he was found dead at his home in 2019.

An inquest into his death concluded yesterday (Friday) after two days of evidence heard by Assistant Coroner Ian Pears.

Mr Pears concluded that Peter died of natural causes as a result of SUDEP.

He confirmed that he would be writing to Calderdale and Huddersfield NHS Foundation Trust about concerns they were not documenting when SUDEP was being discussed with patients or making it clear that the patient had understood the implications of the risks associated with it.

He also directed Leeds Teaching Hospitals to report back to him at the completion of their review into the existing pathways for identifying high risk and complex cases and how they can improve the existing service.

The inquest heard Peter received a good standard of care at Calderdale Royal Hospital but there were concerns over the care he received at Leeds General Infirmary.

There was a dispute between the family and the clinicians from Leeds General Infirmary as to whether Peter was properly advised of the risks of SUDEP and what steps he could take to minimise that risk.

It was accepted by the clinicians at Calderdale that the risks of SUDEP were not fully discussed with Peter and his family as they had made an assumption that that discussion had already been had while he was being treated under the care of Leeds General Infirmary.

Following Peter’s tragic death, his family began to research SUDEP and set up a foundation in their son’s name with the aim of building a community of people working to normalise Epilepsy and free young adults from stigma, limitations and fear.

They want to provide information and support to young adults between the ages of 17 and 30 with Epilepsy about the risks of SUDEP so they can help reduce the number of deaths in young adults with Epilepsy.

Through the Peter Doody Foundation they have now launched the Stop SUDEP Silence Campaign in the hope of raising more awareness of SUDEP and the importance of informing patients about its risk.

Peter’s parents, Joanne and Andrew, said: “We thank the coroner’s service however we have found the coronial process to be very restrictive in terms of the questions that we wanted to ask the clinician’s involved in Peter’s care.

“In addition to the inquest we also have an ongoing complaint against the NHS institutions responsible for Peter’s Epilepsy care. This complaint has now been referred to the Ombudsman, who have been waiting for the inquest to reach its conclusion before furthering their investigation.

“We were never told about SUDEP by any clinician and the first time we became aware of SUDEP and the fact that Peter was at risk was sadly after his death preventing us from safeguarding our beautiful boy.

“We will not stop in our fight to Stop SUDEP Silence and improve Epilepsy care for young adults.”

For more information visit http://peterdoodyfoundation.org .