Epilepsy; improving the patient journey. Seven short films and accompanying booklets

Abstract

Purpose: Epilepsy is a common co-morbidity in people with a learning disability. It has a negative impact on quality of life and life expectancy. Access to healthcare and up take in clinical investigations is more difficult in this population. Our aim was to produce accessible resources to help adults with epilepsy and a learning disability understand more about their condition and how to live well with epilepsy. Method: People with a learning disability who had previously undergone hospital tests shared their experiences of anxiety not knowing what to expect. This helped in the planning and development of a series of short films and booklets. People with a learning disability and epilepsy took the lead parts in the films. A patient focus group reviewed draft versions of the films and booklets and provided constructive criticism to help produce the final products in an accessible format. The films portray patient journeys. In the Transition film, the patient and parent were filmed before, during, and after transition to the adult epilepsy service to obtain their views and perspectives about the process. Results: Seven short films and accompanying booklets have been produced and are available in hard copies and on the internet via our service webpage at Nottinghamshire Healthcare NHS Trust and Nottingham University NHS Trust websites www.nottinghamshirehealthcare.nhs.uk/ epilepsy.www.nuh.nhs.uk/our-services/services/neurology/epilepsyand- seizure-disorders/ Conclusion: The resources will promote better access to specialist investigations and treatment of epilepsy, raise awareness of the services available for people with epilepsy and a learning disability, encourage and enable patients to be more involved in the management of their condition, enhance the experience of young people and their families in the transition from paediatric to adult epilepsy care, and encourage people with epilepsy and a learning disability to live a full and active life.