Epilepsy is a chronic disease characterized by unpredictable, sometimes lifelong, often dangerous, seizures. The condition affects about one in every 100 people and is second only to stroke as the commonest chronic neurological disorder in Europe. Of the 40,000 sufferers in Ireland only about 70% are well controlled on medication, leaving about 12-15,000 people who have breakthrough seizures, and are in regular contact with secondary and tertiary hospital services.
The condition is responsible for about 6,000 hospital admissions per year >95% of which are through the emergency room. There are approximately 130 epilepsy related deaths per year.
International evidence suggests that there is significant variance in care for patients presenting with seizures at the emergency interface and that too many patients are being admitted when often they could safely receive care and advice and rapid follow-up as an outpatient.
To provide the best value, safe care for all people with epilepsy in the right place, at the right time, sharing the best available information.
Under the direction of the office of Clinical Design and Innovation, the National Epilepsy Care Programme has been charged with addressing the historic deficiencies in epilepsy care through a comprehensive change programme that delivers care from cradle to grave in epilepsy.
This will be achieved by addressing three core objectives:
- Improving access to expert care and information.
- Improving the quality of care across the healthcare spectrum from prevention, through managed primary care to complex surgical care for difficult epilepsy
- To improve value conscious care by shifting care where possible from expensive hospital based care to the community
The National Clinical Programme for Epilepsy has a vision for the delivery of epilepsy care in Ireland. This vision is:
The vision is built upon a system where a cohort of new experts in nursing will be helping to manage the requirements of good quality care in the management of Epilepsy. Care will be centralized in epilepsy centres when necessary and decentralized in a structured primary care programme where possible.
A sophisticated and robust means of electronic information management will be developed to become a defacto disease registry within which the important evidence-based metrics underlying good clinical practice will be gathered. Front-line physicians delivering care at the emergency department interface will be provided with an integrated seizure care pathway that will reduce admissions and length of stay, whilst improving patient safety by eliminating treatment variability. Finally, for the 15% or so of very difficult to control epilepsy, the national epilepsy surgery programme, will be enhanced and expanded over 2 sites to provide world-class access to complex but potentially curative surgery.
The National Clinical Programme in Epilepsy Care, in line with all of the clinical programmes from the Directorate of Clinical Design and Innovation has 3 main goals: the delivery of improved quality of care and, improved access to specialist care for patients with epilepsy while at the same time delivering on value (cost) which will ensure the sustainability of the programme into the future.
- To reduce mortality from SUDEP, Status Epilepticus and injuries
- To increase the prevalence of patients who are seizure free.
- To reduce no. of hospital admissions, length of stay and readmission rates.
- To eliminate needless and potentially harmful waits for epilepsy care.
- To provide improved access to specialist opinion
- To ensure all epilepsy patients have timely access to a structured primary care programme.
- To reduce wait time for epilepsy surgery.
- To reduce average hospital Length of Stay (LOS)
- To reduce unnecessary investigation and treatment.
The plan is to deliver these objectives by addressing each aspect of care with a specified care pathway, delivered by experts in epilepsy care.