Amber Walker

“SUDEP is the leading cause of death for patients diagnosed with epilepsy. The risk of death is widely quoted as 1 in 1,000 of those diagnosed with epilepsy, but the individualised risk may be higher or lower depending on the risk factors for the particular patient. Although the mechanism of death from SUDEP is not well understood, modifiable risk factors are known, and there are measures that can be taken by patients and those treating them to mitigate the risk. Patient awareness of SUDEP and the measures they can take to mitigate their risk is vital in ensuring patient's can make informed choices about the management of their condition”

“[the deceased] was at increased risk of SUDEP as she was experiencing uncontrolled tonic-clonic seizures at night and she slept alone, albeit in the family home. An increase in her medication may have mitigated [the deceased]'s risk of seizures and therefore her risk of SUDEP. Although an increase in medication was discussed at the consultation on 8th March 2023, [the deceased] was not advised that declining an increase in her medication in response to her uncontrolled seizures meant she remained at an elevated risk of SUDEP”

“Doctors can be reluctant to discuss SUDEP with patients and/or presume it is a discussion that has been had at previous appointment(s) with colleagues that does not need repeating. There are tools, such as the SUDEP Action-produced "SUDEP Checklist", that can facilitate such a discussion, but they are not used universally. The SUDEP Checklist can be used by any medical practitioner who may come into contact with a patient with epilepsy. Discussions about SUDEP ensure that patients are aware of the general risks of SUDEP, the risks that are specific to the patient and the measures that can be taken to mitigate the risk”