Dr Silvana Mengoni, University of Hertfordshire and Dr Marie-Anne Durand, The Dartmouth Institute
There are approximately 1,087,100 people with learning disabilities in England. They are more likely to have additional physical and mental health problems than the general population. One such health problem is epilepsy, which affects around 1 in 5 people with learning disabilities.
For people with 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 people’s day-to-day lives, and can result in increased hospital admittance, poorer health and higher social care costs and mortality. Specialist services and accessible information for people with epilepsy and learning disabilities are lacking, with a potential long-term impact on their health and wellbeing.
People with epilepsy in the general population are encouraged to self-manage their condition, which can include taking their medication on-time and as prescribed, getting enough exercise, avoiding triggers for seizures, limiting risks of falls and severe injuries, and seeking help when needed. Such self-management support is lacking for people with learning disabilities.
Improvements in education, communication and collaboration between people with epilepsy and learning disabilities, their carers and their clinical teams are needed. The Beyond Words booklet ‘Getting on with Epilepsy’ has been specifically designed for people with learning disabilities and epilepsy. It uses pictures rather than words to tell the story of a young man who progressively learns to manage his epilepsy. The booklet aims to promote understanding of epilepsy, self-management and empowerment.
Given the lack of research in this area, we carried out a feasibility study to determine whether a full-scale trial could be undertaken, and how it would be best to evaluate the booklet’s efficacy. To do this, we worked with collaborators in Hertfordshire Partnership University NHS Foundation Trust, University of West London, University of East Anglia and University of Cambridge. The WIELD (Wordless Intervention for Epilepsy in Learning Disabilities) study was a randomised controlled feasibility trial of the epilepsy booklet ‘Getting on with Epilepsy’ with people with learning disabilities and epilepsy. Forty people took part in the study. Twenty-one people were randomly allocated to use the booklet, and 19 people were randomly allocated to the control condition, which meant that they continued to receive treatment as usual.
People with learning disabilities and epilepsy used the booklet with a nurse and were asked to keep it. They were encouraged to use it again at home at least twice more over the 20-week study period. Our results suggest a beneficial effect of using the booklet on quality of life, assessed using a questionnaire that asked about people’s behaviour and mood. We also talked to people about what it was like to manage their epilepsy and what they thought of the booklet. People had received very few, if any, information resources about epilepsy that were accessible to them. The ‘Getting on with Epilepsy’ booklet was received very positively by people with learning disabilities and epilepsy, and their carers. People felt that it provided an opportunity to talk about epilepsy, and that it helped them, their friends and family understand epilepsy.