Assessment & diagnosis of the epilepsies in people with intellectual disability: promoting health equality by challenging barriers to care

People with intellectual disabilities have a greater diagnostic prevalence of the epilepsies, but diagnosis is often difficult and sometimes inaccurate. People with intellectual disabilities are more likely to have drug resistant seizures and co-existing comorbidities which contributes to the ongoing health inequalities experienced by this population. People with intellectual disabilities can experience inequity in access to assessment pathways, which contributes to misinterpretation of symptoms and misdiagnosis of epilepsy. Communication difficulties, behaviours that mimic seizures, and limited access to specialists can lead to diagnostic overshadowing, misdiagnosis and receipt of inappropriate treatments. This can result in inappropriate treatment and increased risk of harm. This case report aims to provide a clinical scenario to reflect on the challenges within assessment and diagnostic pathways for people with intellectual disabilities and a new diagnosis of epilepsy. The reasons for these challenges and some potential ways to improve diagnosis, including targeted staff training, clearer assessment tools, and the use of technologies are discussed. Improving diagnostic accuracy is key to providing safer, more person-centred care. The role of the intellectual disability nurse is integral to this, and includes targeted staff training, augmented assessment tools, and facilitating the use of technologies.