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SENsE study finds innovative specialist epilepsy nurse model improves care and eases emergency department attendance

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Study leads pictured with report

A new study launched today at Trinity College Dublin by Minister of State at the Department of HEalth Marcella Corcoran Kennedy has found that an innovative model of care involving specialist epilepsy nurses had a very positive impact of the health of people with epilepsy and is a cost effective way of delivering quality care to thousands of epilepsy patients and their families while reducing attendance at emergency departments.

Epilepsy is the most common neurological condition. Epilepsy Ireland estimate that of the more than 37,000 people who have the condition in Ireland there are approximately 12,000-15,000 people with breakthrough seizures who require regular contact with secondary and tertiary hospital services.

In the last decade, 16 epilepsy nurse specialists (ESNs) were recruited by the HSE's National Clinical Programme for Epilepsy (NCPE). Specialist epilepsy nurses provide a range of services to people with epilepsy including nurse-led clinics, rapid access clinics, telephone advisory services and outreach services.

The SENsE Report funded by Epilepsy Ireland and Health Research Board found that as a result of ESNs:

There was:

  • Improved co-ordination and continuity of care, more prompt identification of problems and improved satisfaction with care;
  • A reduced attendance at emergency departments;
  • People with epilepsy in the study who received care from an ESN had the same costs as those treated in a non-ESN site but experienced better outcomes in the management and treatment of their epilepsy
  • People with epilepsy had increased access to specialist epilepsy care and more services available to them

People with epilepsy reported:

  •  improved psychological well-being
  •  improved sense of involvement in their care
  •  that they were more prepared for tests and investigations
  •  that they had an enhanced knowledge of epilepsy and related issues and had more confidence to self-manage their condition;
  • ·Multi-disciplinary teams reported:
  • Informed decision-making on diagnosis and treatment and the promotion of evidence based practice
  • Improved communication between healthcare practitioners across disciplines and services

Agnes Higgins(pictured), lead author of the report and Professor in Mental Health at the School of Nursing and Midwifery, Trinity, said: "This report is testimony to the value of nurse specialists within the health care environment. The findings provide clear evidence of the positive impact epilepsy nurse specialists have on the health and well-being of people with epilepsy and their family members. Not only did they improve people's knowledge and confidence to self-manage, but they enhanced availability, accessibility, co-ordination and continuity of care."

Dr Colin Doherty, senior lecturer in Neurology, Trinity, and Consultant Neurologist, St James's Hospital, Dublin, said: "The SENsE study proves that specialist roles for nurses can provide added value to the management of chronic disease. But more importantly, during this time when the whole medical model of emergency care is under constant pressure, they provide the best hope for both urgent and emergent care in patients who have exacerbations of chronic disease."

Dr Doherty continued: "The usual medical model of emergency department care is problematic for these patients who are complex and have specialist needs. The development of admission avoidance using specialist nurses available in urgent care ambulatory departments across the spectrum of chronic diseases is a potential solution to alleviate pressure on emergency departments. We have the data that proves it works, why not give it a try?"

Professor Higgins concluded: "People with epilepsy and family members who were surveyed and interviewed as part of the research were overwhelmingly positive about the practical and emotional support the epilepsy nurses offered. In particular they spoke about the reassurance it gave them in dealing with their epilepsy, knowing that the ESN was only a phone call away. They were also very positive about the manner in which the ESN helped reduce their attendance at ED, reduced waiting times for services and ensured that they did not fall through the 'cracks' of a busy and stretched service."

Epilepsy Ireland CEO, Peter Murphy (pictured) said: "The Irish healthcare system is frequently maligned but this study highlights the positive and innovative work that is happening in the field of epilepsy to improve the quality of care for people living with the condition."

"The research has shown that the ESN model is highly beneficial, yet cost neutral. We would therefore call on the Minister for Health, Simon Harris TD to implement the key recommendations of the study and in particular to ensure that the ESN service is expanded nationally and with a focus on groups with specific needs such as women with epilepsy, adolescents, and people with an intellectual disability."

The SENsE study examined the role of the ESN and its impact on patients with epilepsy, on other healthcare staff and on service outcomes.

The key findings document and the full report can be downloaded below.