People living with epilepsy are at a 1-in-1,000 risk of SUDEP (Sudden Unexpected Death in Epilepsy), when a person with epilepsy dies suddenly and no reason for death is found. The risk increases for those who have tonic clonic seizures, especially if they happen at night or when asleep, and is more common in people with frequent seizures.
SUDEP deaths often occur overnight. There may be obvious signs a seizure has happened, although this isn’t always the case. Having active and regular seizures increases the risk of injury and death, and there are certain types of seizure which research has shown increase a person’s risk of SUDEP.
The adults and children we care for within St Elizabeth’s are at particular risk of SUDEP and of life-threatening seizures, especially at night. Some of our residents can experience over 20 seizures a day, and need constant round-the-clock care to keep them safe and healthy.
Night-time Monitoring at St Elizabeth’s: To reduce the risk of potentially fatal night-time seizures and to ensure the safety of our children and adults, we have a number of systems in place to ensure we can respond as quickly and efficiently as possible, including:
- A Waking Night Staff
- 24-hour Nursing Support
- A Night Monitoring System.
On arrival, each resident is risk-assessed to determine the exact level of night-time monitoring required to ensure we can detect even the quietest of seizures.
Our night-time nursing staff provide emergency care (where needed), support medication administration, do rounds across the site and respond to any call-out over the bleep / emergency systems.
Our Night Monitoring System, which is fitted throughout our adult and children’s residential homes, includes audio, movement and video monitoring. Every resident’s bedroom is fitted with a monitor, with sensors located near the head of the bed to capture the sounds made by a resident as they sleep. The sensor is linked to a central monitoring system monitored by our highly-qualified waking Night Staff throughout the night.
If a change or disruption in sound is detected, staff can immediately respond, calling our on-site 24-hour health team to assist them. As a result, the system allows staff to respond quickly and appropriately to potentially life threatening situations. Some of our residents also have additional sensors in their beds, including ones that detect vibrations (lasting for more than 10 seconds), can detect if they leave their bed or will alarm if their breathing changes, suggesting a possible on-set of a seizure. In addition, some also have cameras in their room (if they have given consent) that can be monitored for signs of silent seizures.
Staff have been extensively trained to ensure they are able to use and respond to any incidents, and to ensure they can recognise signs of an on-coming seizure, related to the specific individual.
Art work by our Adult Residents - what epilepsy means to me: