Following the outcome of a Coroner’s inquest in Bristol, (Friday 18 March) the mother of 31 year old epilepsy sufferer, James Alexander Stephens wants people with epilepsy and their families to learn more about Sudden Unexplained Death in Epilepsy (SUDEP) which kills up to 600 people every year in the UK.
James, who suffered mild learning difficulties and partial deafness as a result of childhood meningitis, was found dead in his bed at around 1.45pm in April 2010. He had been living in his own flat in Downend, Bristol with 24 hour agency care provided by Cintre Outreach. On the morning of his death James had been woken by his carer at 8 am. He had then gone back to sleep and was in bed until 1.45 pm when he was found dead. The carer, who was in the flat throughout, informed police that he had briefly looked in on James four times during the morning and that he appeared to be sleeping.
The Coroner for the District of Avon, stated James’ had died from natural causes, following the post-mortem which gave the cause of death as Sudden Unexplained Death in Epilepsy or SUDEP. This is a condition James’ mother Margaret Stephens and family had never heard of prior to his death, but which accounts for 500-600 epilepsy deaths each year in the UK.
Mrs Stephens was pleased that following the inquest the Coroner has agreed to report the case to relevant authorities recommending that steps be taken to raise awareness of SUDEP in line with the NICE guidelines.
The NICE guidelines on diagnosis, treatment and management of adults and children with epilepsy states that information about SUDEP must be given to the patient, family and carers. A full risk assessment must be carried out and this should specifically include assessment of the risk of SUDEP, and that risk must be kept under constant review.
Speaking on behalf of Mrs Stephen’s, the family lawyer Frances Wright from Davies and Partners Solicitors said, “There is no evidence that the risk of SUDEP was considered in James' case. His agency carers and social worker knew nothing about SUDEP. His doctors may have known of it, but crucially they did not communicate this to anyone.”
“Evidence at the inquest was that James had a 10% risk of death from SUDEP up to the age of 50. If James, his family and his carers had been given full information about SUDEP they would have been able to have an informed discussion about minimising the risk. Bed monitors are available and James' mother would have insisted he had one and she is confident James would have agreed to this had he known the risks. Carers would also have been alerted to the risks of letting James sleep in without regular checks.”
Frances Wright continued, “There is good medical evidence that monitoring has a protective effect and this is why the NICE guideline states that it must be considered as part of a full risk assessment. The NICE guideline has been in place since 2004 but it is shocking that no-one involved in James' care was aware of it. Once the family have had time to think about what happened at today's inquest, we will be meeting to discuss what further action is required. It is clear that not enough is known about SUDEP and Mrs Stephens is anxious that all people with epilepsy, their families and carers should be made aware of the risks.”
Speaking after the Inquest Mrs Stephens said, “We are grateful to the Coroner's office and court for all their support and for fully respecting our wishes and handling this case in a sensitive manner. The outcome was not a surprise and it has helped us gain some answers. James cannot ever be replaced but if we can raise awareness of SUDEP then perhaps his death was not in vain”.
Notes to editors: SUDEP. It is estimated that 500-600 epilepsy deaths in the UK are due to Sudden Unexplained Death in Epilepsy. Victims die suddenly and the post mortem fails to establish any other cause of death. It is considered more common in young adults who suffer epileptic seizures, particularly those who have night-time seizures. Victims are often found dead in bed. The exact cause is unknown. www.sudep.org