The findings of the study and the review of the CNSE in the UK revealed that the key roles of the CNSE were difficult to define. Yet, the respondents identified that there were common core features central to their contribution to care as specialist nurses.
The epilepsy specialist nurse (ESN) role is complex, diverse and multifaceted, with nurses working with different patient groups in various settings. In this article, recently undertaken national audit studies into ESN services have been combined with key NHS/United Kingdom Central Council for Nursing, Midwifery and Health Visiting directives to outline the role. The main aim of the role is to provide high-quality effective assessment and care for patients/families/carers; to work collaboratively with professionals and other agencies; and to continually develop services/practices, professionals and non-professionals and themselves. Unfortunately the future of the ESN is being threatened; national audit data has identified that nurses are feeling undermined and devalued, having to take on greater workloads and more responsibilities, which they feel are not being recognized. In order to start to rectify this situation, ESNs need to collate the relevant data to prove and advertise their worth. Hopefully this vital resource will survive.
The National Institute for Health and Clinical Excellence (NICE) recommends that people with epilepsy and their families and carers should be ‘given and have access to’ information about sudden unexpected death in epilepsy (SUDEP). The aim of this survey was to examine what, when and how information about SUDEP is disseminated to patients by clinical nurse specialists in epilepsy (CNSEs). Method : A total of 250 postal questionnaires were sent to members of the Epilepsy Nurses Association (ESNA) in July 2006. Responses were received from 146 nurses (58%). CNSEs accounted for 103 (71%) of the respondents. The remaining responses were excluded as not being CNSEs. Results : CNSEs discussed SUDEP with most patients (50%). They tended to raise SUDEP when discussing specific risks (48%) and general risk (71%). Forty-five CNSEs would discuss the issue at diagnosis and 17 when therapy was started. Risk factors mentioned included non-compliance (84%), safety risks (78%), nocturnal seizures (68%), alcohol/drugs use (67%) and history of status epilepticus (65%). The main behavioural responses noted were, improved adherence (62%), avoidance of risk (59%) and anxiety(49%). Only 57% of CNSEs were aware that guidelines regarding SUDEP exist. Conclusions : As SUDEP appears to be related to seizures, management should include optimal drug treatment and seizure control. This may present a challenge as patients generally want to lead as normal a life as possible.
Aim: Previous research has identified that a clinical nurse specialist in epilepsy (CNSE) plays a key role in the management of people with epilepsy (Goodwin et al, 2004). However, there remains a lack of research that focuses on the clinical knowledge and skill base of an individual CNSE working at an advanced level of practice. The aim of this research study is to meet that void. Methods: Nine CNSEs participated in this study. Prospective data on their daily clinical and non-clinical activity over a period of 20 days using a self-completion diary was collected. Following quantitative collation of the data, the researchers obtained qualitative data from the nine respondents using structured interviews to clarify the initial data. Results: Respondents were highly autonomous in nurse-led clinics, and 40% of their time was spent on the clinical aspects of care, which included epilepsy assessment, ordering investigations and drug management. Time spent on non-clinical activities included teaching, education and research was 60%. Conclusion: This study demonstrates the advanced level of practice of the CNSE. As advanced nurse practitioners, the nine participants demonstrated an ability to make independent and complex decisions about patient care using clinical judgment and their unique and expert knowledge base.
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