SUDEP Action

Making every epilepsy death count
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Raising awareness of epilepsy risks with people with learning disabilities


Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester  found that epilepsy is the second most common cause of death for people with learning disabilities. It also found that in the majority of cases, no-one had talked to either patients or their carers about the risk of SUDEP and how that risk could be minimised.

There are around 125,000 people in the UK who have both epilepsy and a learning disability, approximately a quarter of all UK patients with epilepsy. Some research has indicated that these people may be at a greater risk of SUDEP than the standard population. However, while not all of these deaths are potentially avoidable, we know from research in Scotland,  that when people with epilepsy are told about their risk of dying, around 1 in 3 changed their lifestyle to reduce their risk.

To help address this issue, we have produced two leaflets to help raise awareness of epilepsy risks, aimed specifically at people with learning disabilities and their parents and carers.

These take the form of an Easy Read booklet and an accompanying companion guide for parents and carers, enabling them to go through the information with the person with epilepsy, providing additional information to suit their needs and ability. They have been developed with information provided by the Leicestershire Partnership Trust and approved by their Disabilities Checker Group. 

Support for these new leaflets has been positive:

"It is well recognised that people with ID are at higher risk of epilepsy deaths.  People with ID are prone to getting marginalised regarding their needs getting met. Epilepsy is one of the biggest culprits for premature mortality in people with ID. Person centred planning, awareness and appropriate communication is key to keep this vulnerable population safer. These leaflets are a big step in this direction." Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry, Cornwall Partnership NHS Foundation Trust

“The SUDEP easy read leaflets are something we were in the process of putting together so it is great to be able to use one that has been developed by SUDEP Action. SUDEP is a subject that can be difficult for people to discuss but these leaflets open up the conversation with visual aids for discussion about the risks and how to minimise them.” Mary Codling, Primary healthcare lead nurse for learning disability, Berkshire Healthcare Trust

These leaflets are now available to view here. If you would like to receive a sample copy, please get in contact via samantha.ashby@sudep.org 

References

Young C, Shankar R, Palmer J, Craig J, Hargreaves C, McLean B, Cox D, Hillier R. Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk? Seizure, February 2015Volume 25, Pages 112–116.
 
Kiani R, Tyrer F, Jesu A, Bhaumik S, Gangavati S, Walker G, Kazmi S, Barrett M. Mortality from sudden unexpected death in epilepsy (SUDEP) in a cohort of adults with intellectual disability. J Intellect Disabil Res. 2013 May 7. doi: 10.1111/jir. 12047

Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell? J Neurol Neurosurg Psychiatry 2006;77:199–202.

IV. Kerr M. Implications for clinical practice – SUDEP in adults with an intellectual disability. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014. www.sudepglobalconversation.com

V. Robertson, J et al. Mortality in people with intellectual disability and epilepsy: A systematic review. Seizure 2015: Vol 29, 122-133.