Dr. Colin Doherty:

To be clear, I am speaking as the HSE national clinical lead for the epilepsy programme as well. I am a consultant neurologist at St. James's Hospital and the national clinical lead for the epilepsy programme. I thank the committee for the opportunity to present a perspective on the state of care for epilepsy patients in Ireland.

Yesterday was European Epilepsy Day and it is therefore timely that we have been given this opportunity to present our work. I will outline the progress made in the national epilepsy care programme over the last three to four years and underline the significant challenges that remain to be overcome.
Epilepsy is a chronic disease characterized by unpredictable, sometimes lifelong, seizures. The condition affects about one in every 100 people and is second only to stroke as the most common chronic neurological disorder in Europe. Of the 40,000 sufferers in Ireland only about 70% are well controlled on medication, leaving about 12,000 to 15,000 people who have regular 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 in Ireland, more than 95% of which are through the emergency room. The condition kills about 130 people 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.
The national epilepsy care programme, under the direction of the office of clinical strategy and programmes has been charged with improving access to expert care and information, improving the quality of care and shifting care where possible from expensive hospital-based care to the community. The core of the plan to deliver these objectives is to address each aspect of care with different care pathways. The first is managed primary care which will be delivered by general practitioners working with practice nurses and with the guidance of epilepsy advanced nurse practitioners, ANPs, in every region in the country, who will manage stable patients with epilepsy in the community and who will guide others though the health system, providing them with the resources for self-management and contact and referral information for expert care. Some contractual issues need to be resolved before widespread uptake in primary care of this pathway.
The second aspect is the development of six regional epilepsy centres nationally - four adult centres and two paediatric centres. These will be staffed by epilepsy experts from a nursing background who will be the main contact within the community services. Working in tandem with medical consultants, they will begin providing rapid access service for epilepsy patients, telephone, e-mail and web-based advice. In time, they will provide outreach services to secondary care hospitals, maternity hospitals, residential intellectual disability services and primary care centres.At present every region in the country has, to a greater or lesser extent, access for epilepsy services with these nurses in place everywhere except from HSE south. The national epilepsy care programme and the HSE have provided funding for the seven additional nursing staff required to deliver the programme but for unclear reasons, nothing has happened. At Cork University Hospital a sum of €500,000 has been invested in equipment that is awaiting staff.
The third pathway is the use of an integrated care pathway, administered though emergency departments and acute medical admissions units whereby front-line doctors and nurses will use an evidence-based protocol to help with management of patients who present to hospitals with seizures. An early version of the pathway has been in use in St. James’s since 2009 and we have published a research paper showing significant reductions in admission rates, length of stay, readmission and follow-up time by the use of the pathway.
Finally, the 15% of highly complex epilepsy patients who need to be assessed for possible epilepsy surgery will be dealt with by expanding the pre-surgical evaluation beds in Ireland from four - two adult and two paediatric - to ten - two paediatric and eight adult. These beds will be spread over three sites - two paediatric beds in the new national paediatric hospital, four adult beds in Beaumont Hospital, Dublin and four in Cork University Hospital. Last Friday the Minister opened the state of the art, fully functional and staffed epilepsy monitoring unit in Beaumont Hospital. This investment of capital and staff is the first such development since 1982 and is most welcome. A similar investment in equipment has been made in CUH but again, without staff, it will remain idle and without action will become obsolete.
The opportunity for and necessity of using health care data and information intelligently has never been greater. The information generated from health care data is an essential tool in the transformation of health care, which aims to improve quality, safety and efficiency of patient care. The epilepsy programme is a leader nationally with the implementation and use of the award winning epilepsy electronic patient record, EPR, in a number of regional epilepsy centres including University Hospital Limerick, University College Hospital Galway and St. James’s, Beaumont and Connolly hospitals in Dublin. This secure web-based EPR is facilitating the sharing and exchange of clinical information across traditional organisational boundaries. The epilepsy EPR is currently seeking an industry partner through a Centre for Management and Organisation Development, CMOD, funding model for further developments over the next five years to the tune of €250,000.
The national epilepsy care programme has a ten-year vision for the transformation of epilepsy care in Ireland. The aim is to provide the best value care for all people with epilepsy in the right place, at the right time, sharing the best available information. By then a whole cohort of new experts in nursing will be helping to manage the requirements of good quality care for those suffering from this chronic disorder. Care will be centralized in six regional 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. 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, while improving patient safety by eliminating treatment variability. What we need from this Joint Oireachtas Committee is a recognition of the gains made and continued support and focus on the needs of people with epilepsy, a common disease with serious consequences that will require further investment in staff and equipment to reach international standards once the initial investment in the programme is complete.