Epilepsy Society ran the Early Interventions Project from 2012-2015 in an effort to raise awareness of the condition and to help those with epilepsy to better manage their care. The project involved education workshops, as well as information stalls and events in six north and east London boroughs, and recruited people affected by epilepsy to participate in self-management courses and patient and carer forums.
The project particularly sought to educate “hard to reach” population groups from socially deprived areas, with lower levels of awareness and typically less influence over national service provision. People within these groups sometimes suffered from cultural misunderstandings and the stigmatisation of epilepsy. Workshop resources were produced in six minority ethnic languages in order to increase understanding and facilitate active participation.
Through the self-management courses participants have gained an improved understanding on a range of issues relating to epilepsy, including medicines and treatments, lifestyle choices and risk-avoidance. Participants felt more empowered to speak freely about their epilepsy and make decisions about their health and welfare. This led to better health outcomes and reductions in seizures in some instances.
For instance, results from the Tower Hamlets self-management course have shown a number of positive developments in the participants’ lives and healthcare outcomes. For participants that attended three or more sessions, seizure frequency decreased for half of those with epilepsy, 41% found new work or volunteering opportunities, and 16% reported an increase in discussions concerning their medication with healthcare professionals.
Additionally, 50% of the participants with epilepsy had a better understanding of the importance of personalised care plans, while a third of the group required less contact with their hospitals’ epilepsy teams, and half reported decreased A&E visits due to better seizure control and reduced seizure severity. Further evidence on the impact of the courses has being gathered by the Rand group through the QOLIE-31 quality of life survey for adults with epilepsy, and by the King’s Fund’s Patient Activation Method (PAM) report.
Another aspect of the project was the service user forums, where commissioners (and other local health decision makers) were given the opportunity to speak with patients in an informal community-based setting. This ensured that the voices of people with epilepsy and their carers were heard at CCG level, and supported commissioners’ efforts to meet their goals around patient and public involvement in a meaningful way. Some of the people who have taken part in the Epilepsy Society courses and forums have since become involved with Healthwatch committees, and participated in borough-level stakeholder reference groups.
The Early Interventions Project was initially funded through the Department of Health Innovations grant scheme for three years, to March 2015. Epilepsy Society has since successfully gained bursaries from two CCGs, Tower Hamlets and Hackney and City, and it continues to run a monthly self-management course in Tower Hamlets.