Academics at the University of Liverpool have led a project to improve the care of patients with epilepsy and reduce unnecessary admissions to A&E. By connecting patient records from hospitals and ambulance services, and making it available to paramedics when they are called out to patients requiring urgent care, they hope to provide quicker care for patients and keep them out of hospital.

Epilepsy is one of many chronic diseases that can suddenly worsen, requiring urgent care. It accounts for 1.4% of UK hospital emergency medical admissions and affects around 600,000 people in the UK, with £3 billion spent annually in the NHS. When an ambulance is called for someone who has had a seizure, paramedics do not have access to information that could help them to manage the patient – such as diagnosis, usual seizure type, rescue medication protocol, place of safety or next of kin. As a result, many patients are taken to the emergency department (ED) unnecessarily.

The House of Commons has called for improvement of neurological services in the UK, due to the poor coordination of services, patchy hospital care, long delays in diagnosis and few neurologists available in emergency departments. Interviews with people with epilepsy and their carers also highlighted their disappointment that paramedics do not routinely have access to their medical record or management plans, that many hospital attendances are unnecessary and diminish their quality of life, and that they are not overly concerned about data sharing among NHS partners.

The overall objective for the project was to develop a regional Healthcare Information Exchange, sharing healthcare information across seven care organisations in Merseyside and the Wirral, as a test case.

Together with paramedics, patients, neurologists and ED representatives, the team identified a core dataset to be made available to paramedics and ED staff to aid clinical decision making. This includes a combination of information from Neurology EPR (diagnosis and management), primary care (prescribing), ED (previous attendances), and ambulance (999 calls).

The provision of vital information to those at the frontline, such as paramedics, is expected to facilitate a change in practice, resulting in more efficient care and fewer admissions to ED.

Epilepsy patients will receive better and more appropriate care with less risk of unnecessary interventions and inappropriate management decisions, and a greater likelihood of having care directed from specialist services.

The IT industry will also benefit from the project as they will be able to rollout similar IT infrastructure projects for a range of long-term conditions such as COPD or frailty, that involve sharing of information across the NHS.

Partners: University of Liverpool, North West Ambulance Service NHS Trust, The Walton Centre NHS Foundation Trust, , Alder Hey Children’s NHS Foundation Trust, Epilepsy Action, Forcare