Inquest rules Joshua died of SUDEP with epilepsy undiagnosed
An inquest has ruled that Joshua Owen died of SUDEP, even though his epilepsy was never diagnosed.
An inquest has ruled that Joshua Owen died of SUDEP.
Joshua, 20, from Ivybridge, died suddenly in 2020. He was discovered by his mum Zoe when she went to wake him in the morning. An inquest was originally held into his death in 2022 but this was adjourned because the Coroner was satisfied, after listening to the family and SUDEP Action, that further evidence should be sought.
On Monday September 23, the coroner – after taking evidence from Dr Deborah Cook and hearing statements from the family and SUDEP Action – found on the balance of probabilities that Joshua suffered a number of seizures prior to his death. He experienced seizures at night prior to his death and his death should therefore be recorded as Sudden Unexpected Death in Epilepsy (SUDEP).
Recording a conclusion of natural causes, assistant coroner Ian Arrow said: “On the balance of probabilities, Joshua had suffered a number of seizures prior to his death, the latest of which had led him suffering a facial injury. He particularly suffered seizures during the nights prior to his death. His death was a natural death.”
Previously, the pathologist had recommended that his death be recorded as sudden cardiac death, but this was ruled out by Dr Cook, the attending pathologist. Dr Cook spoke about the importance of awareness of the risks of nocturnal seizures and that people presenting symptoms should receive an urgent referral for diagnosis.
Detailed evidence was put together by SUDEP Action Bereavement Caseworker Julia Stirling, who worked with the family.
In 1997, the definition of SUDEP came from the first international workshop convened by SUDEP Action and the National Audit of Epilepsy Deaths 2002. Led by SUDEP Action, two decades of research and two statements by world leading SUDEP experts, the application of the SUDEP definition is now recognised in sudden unexpected deaths in people with epilepsy at first seizure or where seizures go undiagnosed during life.
Jane Hanna, SUDEP Action Director of Policy & Influencing, gave a statement in which she spoke about the charity’s work supporting families across the UK, who had lost a loved one due to SUDEP whilst waiting for their epilepsy to be diagnosed and treated. She said that in some areas there was a waiting time of up to 12 months. She also told the inquest there was strong evidence that the risks of SUDEP could be minimised if people had access to a diagnosis and the most effective medicines for their epilepsy with seven out of 10 people able to control their seizures.
Jane said: “This case is important for all families fighting to get SUDEP recognised as a cause of death. When SUDEP Action started 30 years ago, post-mortems – and getting the true cause of death recorded accurately – provided one of the biggest challenges and it is well documented that SUDEP can be routinely miscategorised and underestimated. Joshua’s epilepsy was not diagnosed in life. It matters to the family that his epilepsy is recognised now because if the cause of death is wrongly recorded as ‘unascertained’ or as a ‘sudden cardiac death’ there are no opportunities for future learnings. This is a landmark case which sets an important precedent for those who have sadly died because they were unable to have their epilepsy diagnosed.”
Joshua’s mother Zoe said: “The support I have received from SUDEP Action has been invaluable and I could not have got through this process without them.
They have been with me since our lovely Joshua passed away in November 2020. I have received support from Tracy, Julia, and Jane and they all do amazing work behind the scenes, preparing everything for the inquest and offering bereavement support and advice. I do not think people realise how much work they do behind the scenes and the preparation and time that goes into preparing all the documents that are needed for an inquest. I will be forever grateful for having them by my side.”
