Cornwall Epilepsy Life Project findings shed light on likely lifesaving interventions

A study in Cornwall funded by SUDEP Action through Kt's Fund has found that some people with epilepsy are not seeking medical intervention that could save their lives.  Researchers have been looking at epilepsy related deaths including Sudden Unexpected Death in Epilepsy (SUDEP).  The study has revealed that many patients who died had possibly not been in contact with their health teams despite showing some warning signs before their death.

The Epilepsy Life Project that has been made possible by local funding from Kt’s Fund.  Kt’s fund was set up by the family and friends of 20-year-old Katie Hallett who died of SUDEP in 2006.

Local Coroner Dr Emma Carlyon provided access to the coroner’s records.  In an interview with BBC Radio Cornwall Dr Carlyon explained why she became involved with the study: “The difficulty with epilepsy is that often they are young people.  It is very tragic to sit at an inquest and see the pain the parents have… after losing a child from epilepsy especially if they have non-compliance with their medication.” She added that one of the most frequently asked questions is “could it have been prevented?” She says this question made her realise there was a need to do some work on this issue. 

Dr Carlyon decided to work with Dr Shankar’s research team to see if there were actually any figures to back up what she was seeing at the inquests. Study leader Consultant in adult developmental neuropsychiatry at Cornwall Partnership NHS Foundation Trust Dr Rohit Shankar and his research team looked at the epilepsy death records between 2004 and 2012. Those involved in the study believe more deaths could be prevented.  Dr Shankar has been trying to alert people to the risk factors associated with SUDEP.  

Speaking to BBC Radio Cornwall Dr Shankar explained that the researchers had come up with a safety checklist which has 20 factors from past evidence of risk factors in people who died of SUDEP.  He pointed out that people who had had a repeated increase of seizures in a six month period or so and were not been in contact with their specialist team appear to be overrepresented in the studied population.  He urged anyone with epilepsy who may have concern for their condition worsening to discuss their concerns with their GP.

Commenting on the findings, Dr Carlyon said: “it is exactly what I had thought they would find that even with such a small group that they have looked at they found a good number of learning points which could be translated into public health prevention strategies.” 

The study has been funded through Kt’s Fund, a charity set up in memory of 20 year old Katie Hallet who died of SUDEP.  Since her death mum Liz and Stepfather Bob Hollingdale set up a charitable trust in her name.  KT’s Fund has raised nearly £60,000 which has gone to SUDEP Action’s Epilepsy Life Project in Cornwall.

BBC’s Karen Stuart spoke to Liz who said: “When the opportunity came of this big project in Cornwall, we felt it was a fitting tribute to Katie, it was going to be based locally and it was also going to cover all the aspects which we wanted, the facilities that were not available for our daughter to receive.  Katie was never informed of the risks and for me as a mum this is a very important factor.” 

Further updates on this project will be published as soon as they are available.