We have been supported in this work by the SUDEP Research Initiative,a research collaboration with SUDEP Action. SUDEP Action has worked as a partner and has provided vital seed funding for our research.
Our team worked with bereaved families to establish a definition of SUDEP and has worked with researchers around the world to promote a uniform global meaning. This is vital work so that we are able to support coroners on the cause of death and help ensure interpretations of research is reliable across different research studies.
We have found evidence in a large study that supervision or being with someone during a seizure has a protective effect. This is helpful information for people with epilepsy and carers, although research is now urgently needed to develop and test effective devices to alert people to seizures.
Keeping track on mortality in the UK is vital. Our research into trends in mortality has been used to brief the government and policy makers. We found that reported deaths in epilepsy rose by 31per cent between 1993 and 2007 at a time when mortality from all other causes fell. This may be due to increased awareness of epilepsy mortality following 1995 when SUDEP Action founded and work began in earnest in the UK.
We found some new evidence that a significant number of people who died had not picked up their epilepsy medication prescriptions. This is further evidence that non-adherence to medication is a risk factor and that work needs to be done to support patients with this. Other people at increased risk were epilepsy patients who have depression, recent injuries or alcohol problems. Again this suggests the need for support for patients. However, patients who remain seizure free over 12 months are at lower risk.
Our work has also looked at major injuries and we won best research paper in 2012.
We are also interested in tracking the survival rates of people with epilepsy following interventions such as epilepsy surgery and the Vagal Nerve Stimulator.
We are researching an improved system of support for patients in the community.
We are part of a European collaboration looking at close monitoring of patients with poorly controlled epilepsy. We are particularly interested in what happens to the breathing and other changes during seizures.
We are supporting SUDEP Action with the Epilepsy Deaths Register.