This information is for carers of people with epilepsy and a learning disability
This page is about safety, sudden unexpected death in epilepsy and being in hospital.
There are many different things to help a person with epilepsy and a learning disability stay safe. These include ways to avoid injury inside and outside the home, seizure alarms and helmets.
Sudden unexpected death in epilepsy (SUDEP)
People with epilepsy and a learning disability are more likely to die early than other people. So it’s especially important to know about sudden unexpected death in epilepsy (SUDEP). This is a difficult topic, but something it’s really important for you to know about as a carer.
Here is the NICE guideline that underlines that:
220.127.116.11 Healthcare professionals should be aware of the higher risks of mortality for children, young people and adults with learning disabilities and epilepsy and discuss these with them, their families and/or carers.
The most important thing about SUDEP is knowing the way to reduce risks. The biggest cause of SUDEP is night time convulsive seizures. Make sure the doctor knows about these because reducing the number of night time seizures is the best way to reduce the risk of SUDEP. If the person you look after is still having night time seizures it is a really good idea to get some sort of bed alarm or listening device so you know when they are happening. Doctors also recommend you sit with the person for up to an hour after the seizure has finished.
The NHS website has a range of useful guidance about getting the person you look after the best care and treatment while in hospital.
In particular you may find it useful to download a hospital passport. Here are two options:
- East Kent Healthcare hospital passport template, extensive but not easy read.
- Easy Read Healthcare passport. This one is suitable for hospital but can also be used more generally.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.
Our thanks to Professor M. Kerr, Welsh Centre for Learning Disabilities, who reviewed and contributed to this information.
Professor M. Kerr has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
- Updated November 2015To be reviewed November 2018