Getting on with Epilepsy coverA severe lack of understanding and research into the needs of people with learning disabilities and epilepsy is placing them at risk, according to experts from the University of Hertfordshire.

There are more than 1 million people with learning disabilities in England, and about 1 in 5 of those will also have epilepsy, making it the most common neurological condition for people in that demographic. 

In the general population, people with epilepsy are encouraged to self-manage their condition, carrying out activities such as taking medication on-time, getting enough exercise and seeking help when needed. For them, it is a major and successful part of staying as healthy and independent as possible. But for those that also have a learning disability, this level of self-management isn’t always expected by clinicians or carers, and therefore the additional support they need isn’t always available. 

For example, research shows that while just 30% of people in the general population with epilepsy have seizures when taking medication, this jumps to 70% for those with a learning disability, highlighting the need for additional support.

Dr Silvana Mengoni, from the University of Hertfordshire's Centre for Health Services and Clinical Research, said: “Given the lack of research in this area, improvements in education, communication and collaboration between people with epilepsy and learning disabilities, their carers and their clinical teams is urgently needed.

“For people with both learning disabilities and epilepsy, seizures can be severe, frequent and difficult to control with medication. As a result, epilepsy can have a significant negative impact on their day-to-day lives, and can result in increased hospital admittances, health and social care costs and mortality.”

But there are measures that could potentially help people with learning disabilities to manage their epilepsy more effectively. A recent study by Dr Mengoni and colleagues, published in BMJ Open, suggested that a simple picture book could help them to better understand epilepsy and the importance of self-managing the condition, as well as improving communication with carers. 

The Wordless Intervention for Epilepsy in Learning Disabilities (WIELD) study provided participants with a booklet called Getting on with Epilepsy. Participants used the book with a trained researcher and a carer present before being asked to use it at least twice more over 20 weeks in their day-to-day lives. 

The study found the booklet was received positively from the participants suggesting that there is a need for more tailored education and self-management information which is currently not being met by current practice.

Dr Mengoni said: “There is an important need to improve communication between healthcare professionals and people with learning disabilities regarding decision-making about epilepsy management. Therefore, this booklet has the potential to provide people with learning disabilities with the skills and confidence to better manage their own epilepsy, empower them and generally improve their quality of life.”