Epilepsy Specialist Nurses Research Articles

Evaluating an epilepsy clinical nurse specialist development programme

There is a demand across the country for highly trained epilepsy specialist nurses (ESNs) due to the increasing number of patients that this long-term condition affects. It is estimated that 65 million people worldwide are affected by epilepsy. If not treated and supported effectively, epilepsy comes with high risk of mortality, comorbidities, stigma and high potential costs to the NHS. Patients who do not have access to a highly trained ESNs can be significantly and negatively affected by wrong diagnosis, gaps in knowledge when facing general care, incorrect and, on occasion, detrimental treatment options, poor epilepsy education and advocacy. Furthermore, patients living in rural areas often do not have access to large tertiary centres or neurologists with an interest in epilepsy. Due to this, access to ESNs running nurse-led clinics in smaller hospitals and community settings is vital to improving patient care. Nonetheless, there is a shortage of highly trained ESNs. The ESN development programme discussed in this article was formed as a concerted action to address recruitment challenges and widen the area and scope of care for people with an epilepsy diagnosis.

Clinician views regarding early surgery for paediatric epilepsy

ObjectiveMany children with lesional epilepsies progress to drug resistance, a criterion required for surgical referral. Expedited surgery may reduce exposure of the developing brain to uncontrolled seizures, improving cognitive outcomes. Designing a trial comparing early surgery with standard care necessitates input from specialist clinicians regarding feasibility and measurable outcomes, which this study investigated. MethodsOnline surveys were disseminated from June-July 2022 via regional paediatric epilepsy networks and professional societies. 51 UK clinicians responded, mostly paediatricians, paediatric neurologists and epilepsy specialist nurses. Candidacy for epilepsy surgery, outcome measures and support for the proposed study were surveyed. Clinician views were compared by speciality, using Pearson's chi-squared tests to explore differences. Results76–98 % of clinicians would refer children for presurgical evaluation at/before drug resistance development across four subgroups (those younger/older than two years, and those with/without a detectable lesion). Earlier referral, at/before epilepsy diagnosis, was considered mostly in those with visible lesions (53 %) and those under two years (31 %). 73 % would consider early surgery before drug resistance is established. Top outcomes to measure were seizure freedom (39 %) and quality of life (22 %). Views of paediatric neurologists and paediatricians did not differ (p > .05). SignificanceClinician opinions generally aligned with published guidance regarding epilepsy surgery referral. Some remain cautious to refer young children with lesions prior to trialling more than one antiseizure medication. Most support early surgery in appropriate patients, with seizure and quality of life outcomes rated highly. Incorporating these perspectives will aid future trial design, recruitment and clinical utility.

Impact of educational actions on the quality of life of patients with epilepsy: A randomised controlled trial

IntroductionEpilepsy is a common and disabling disease for patients and their families. The care of these patients is no longer limited to the simple control of seizures, but considers, in a more global way, their quality of life (QOL). Improving the QOL is precisely one of the main objectives of therapeutic education. The aim of this study was to evaluate the impact of educational actions on the global QOL of patients with epilepsy. Materials and methodsThis study was carried out between October 2016 and August 2018. 80 patients were included over 18 years old with an epileptic condition diagnosed for at least 6 months and treated in the University Hospital of Caen Normandy in France. They were randomised to either the control group with usual care or the experimental group with the group educational sessions. The overall score for the QOLIE-31 survey was assessed from the inclusion (M0) and 6 months late. ResultsAt the M0 mark, the score of the control group (58.1 ± 12.3) was significantly lower than that of the experimental group (61.1 ± 14.3). After 6 months, the overall QOL score, was significantly higher for the experimental group compared to the control group (p = 0.002). In the experimental group, the overall score went from 61.1 ± 14.3–69 ± 14.2 and in the control group it went from 58.1 ± 12.3–58 ± 16.2. DiscussionThe quality-of-life overall score for patients having participated in educational actions provided by epilepsy specialist nurses improved significantly. Complementary research is necessary to assess the sustainability of these effects and interactions with the caregivers.

Carer's perceptions of paediatric epilepsy services with and without epilepsy specialist nurses: A thematic analysis

PurposeTo obtain in-depth perspectives from carers concerning their relationships with paediatric epilepsy services with and without an Epilepsy Specialist Nurse (ESN). MethodsSemi-structured interviews with 58 carers, 37 from service areas with an ESN, and 21 from areas without an ESN in the North-West of England, were conducted and analysed using Thematic Analysis adopting a realist epistemological position. ResultsFour themes relating to different aspects of carers’ needs were identified. These were needs for understanding the condition, ongoing condition management support, educational liaison support, and emotional support. The ESNs were able to meet these diverse support needs of families proactively and sensitively, whereas in services without ESNs, carers were left to attempt to fulfil needs across different contexts in an ad hoc manner. ConclusionPaediatric ESNs provide an essential resource for both CWE, carers and other professionals involved in the care of CWE that helps to mitigate carer burden.

Significance and Role of Epilepsy Specialist Nurse

Significance and Role of Epilepsy Specialist Nurse

Do all patients in the epilepsy monitoring unit experience the same level of comfort? A quantitative exploratory secondary analysis.

AimsTo find out which variables may be associated with comfort of patients in an epilepsy monitoring unit.DesignExploratory, quantitative study design.MethodsData were collected from October 2018 to November 2019 in Austria and Southern Germany. A total of 267 patients of 10 epilepsy centres completed the Epilepsy Monitoring Unit Comfort Questionnaire which is based on Kolcaba's General Comfort Questionnaire. Secondary data analysis were conducted by using descriptive statistics and an exploratory model building approach, including different linear regression models and several sensitivity analyses.ResultsTotal comfort scores ranged from 83 to 235 points. Gender, occupation and centre turned out to be possible influential variables. On average, women had a total comfort score 4.69 points higher than men, and retired persons 28.2 points higher than high school students ≥18 years. Comfort scores of younger patients were lower than those of older patients. However, age did not show a statistically significant effect. The same could be observed in marital status and educational levels.ConclusionWhen implementing comfort measures, nurses must be aware of variables which could influence the intervention negatively. Especially, high school students ≥18 years should be supported by epilepsy specialist nurses, in order to reduce uncertainty, anxiety and discomfort. But, since the identified variables account only for a small proportion of the inter‐individual variability in comfort scores, further studies are needed to find out additional relevant aspects and to examine centre‐specific effects more closely.ImpactNurses ensure patient comfort during a hospital stay. However, there are variables that may impair the effectiveness of the nursing measures. Our study showed that the experience of comfort was highly individual and could be explained by sociodemographic variables only to a limited extent. Nurses must be aware that additional factors, such as the situation in the individual setting, may be relevant.

Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision

PurposeTo compare paediatric epilepsy services with and without Epilepsy Specialist Nurse (ESN) provision on measures of carer satisfaction and accessibility of service. MethodsIn Study 1, carers in Northern England (n = 69 with an ESN, n = 27 without an ESN), completed the Parent Report of Psychosocial Care Scale to measure satisfaction with service provision. A measure of accessibility of service was also included. In Study 2, in depth semi-structured interviews with 58 carers (51 of whom had also participated in Study 1) were examined for talk related to accessibility of service. ResultsIn Study 1, Satisfaction with service levels were high across all areas, (ESN areas Mdn = 9.04, IQR = 1.48, non-ESN areas Mdn = 8.29, IQR = 2.41; maximum score = 10), but with carers from ESN areas over 3 times more likely to endorse scores at the median or above relative to non-ESN areas (OR = 3.28). For accessibility, carers in ESN areas were over 5 times more likely to have a median score or higher (ESN areas Mdn = 10, IQR = 0.45, non-ESN areas Mdn = 8.4, IQR = 5, OR = 5.43). In study 2 a majority of all carers reported having made at least one attempt to contact services between appointments, for a wide range of reasons, with timely resolution reported in ESN areas, but more variable resolution occurring in non-ESN areas. ConclusionPaediatric ESNs provide a critical and timely service to children with epilepsy and their carers.

Audit for prescription and administration of PRN buccal midazolam for people with learning disabilities and epilepsy in the Hertfordshire & Essex

AimsThe current audit aims to identify the gaps in the practice of administering prn buccal midazolam, for management of epilepsy in people with intellectual disability and to review training needs, with a view to improve patient care.BackgroundConvulsive status epilepticus is a medical emergency requiring admission to hospital and has a mortality as high as 20% (SUDEP -Sudden Unexpected Death in Epilepsy). It is imperative that the carers are fully aware of the risks associated with the epileptic attacks, are able to recognize the attacks and offer rescue medication to the patient in a timely and effective manner. National guidelines have been drafted jointly by ESNA (Epilepsy Specialist Nurses Association) and ILAE (International League Against Epilepsy) for prn administration of buccal midazolam. The use of rescue medication by trained carers can significantly improve the outcome and reducing the risk of hospital administration and chances of SUDEP. Buccal midazolam is widely used to manage prolonged seizures. Administration should be undertaken only by people who have received both epilepsy awareness and buccal midazolam training.MethodAll patients with intellectual disability with epilepsy were studied and patients who were prescribed prn midazolam have been shortlisted shortlisted for data analysis. A template was designed and data are being collected from the carers, community nurses and the prescribing clinicians. Data are categorized under headings of background information about epilepsy, recognizing complications during a seizure and the ability to administer buccal midazolam. Further information about the type and the frequency of training courses (including the refresher courses) being offered to the carers for administration of buccal midazolam would also be documented. There is also data collection pertaining to the timely review of the care plan by the prescribing clinicians and the about the licenced or unlicensed used of midazolam. The quality of epilepsy awareness training is being explored in depth and also the competency of the county council nurses offering the training to the carers shall be analysed under different headings.ResultData are currently being collected in Hertfordshire and Essex mental health services.ConclusionAfter the data analysis, the short comings shall be addressed and effective measures shall be put in place to improve the quality of training being provided to the carers and to standardise the practice for prn midazolam prescription.

Preferred practices for rescue treatment of seizure clusters: A consensus-driven, multi-stakeholder approach

BackgroundSome of the most difficult issues in the care of people living with epilepsy (PWE) regard the definition, treatment, and communication of unexpected increase(s) in seizure frequency over a relatively short duration of time. In order to address this issue, the Epilepsy Foundation established the Rescue Therapy Project in Epilepsy to understand the gaps, needs, and barriers facing people with epilepsy who use or may benefit from rescue therapies (RTs) for “seizure clusters”. The intent was to provide consensus-derived recommendations from a broad stakeholder group including PWE, their caregivers, epilepsy specialist physicians, nurses, pharmacists, and representatives of epilepsy & neurology advocacy and professional organizations. MethodsDuring Phase 1, a group of epilepsy experts and stakeholders (N = 54) were divided into 3 workgroups that met by conference calls and in-person. Content of workgroups was developed into preferred practices related to RTs. In Phase 2, these recommendations were evaluated by a larger more diverse group of healthcare professionals, PWE, and caregivers. Agreement with recommended preferred practices at 80% or greater was set as the level to achieve consensus. ResultsThe preferred practices were centered around four core themes identified by the experts and key stakeholders: the importance of a common language; when RTs should be prescribed; assessing the need for RTs; and education/communication about RTs. Consensus from experts and key stakeholders was reached for 27 recommended preferred practices using the Delphi method. “Rescue therapy” or “rescue medicine” was the preferred term to describe what to name a treatment intervention in this context, and seizure action plans was the preferred term to communicate how to respond to a seizure or SCs and the use of RTs. In Phase 2, 23 of the recommendations reached final consensus, including the need for a common language, and the need to consider RTs and seizure action plans in all PWE in an individualized manner, several circumstances in which RTs should be prescribed, and the importance of education regarding RTs and SAPs.

The epilepsy specialist nurse: A mixed-methods case study on the role and activities

PurposeTo describe the role and activities of epilepsy specialist nurses (ESNs) operating as a team in the setting of a hospital specialising in the diagnosis and management of seizure disorders. MethodsWe conducted a descriptive mixed-methods embedded single case study. We recruited 9 ESNs, 14 of their professional colleagues and 9 ‘key informants’ to analyse their perceptions of the role and activities of ESNs. We collected data through interviews, questionnaires, observations, and documentation. The study was conducted at the Filadelfia Epilepsy Hospital, Denmark. ResultsThe team of ESNs offers holistic care to patients and their caregivers regarding the clinical, social, and emotional aspects of epilepsy. The ESNs are integrated in a multidisciplinary team and promote collaboration among the team members. ESNs also contribute to organisational aspects and perform research activities. ConclusionA structured group of ESNs can operate effectively and extensively in a specialised hospital setting. Our findings contribute to clarifying the description of the ESN’s role, and provide an example of how ESNs can be incorporated into a hospital’s organisational structure.

Patient satisfaction with information provided by epilepsy specialist nurses: Results of an online survey

The aim of this study was to investigate the perspective of Norwegian patients with epilepsy regarding the information that they have received about epilepsy-related issues and to determine whether there was a difference in information received between those who had been followed up by an epilepsy specialist nurse (ESN) and those who had not. Further, were there differences regarding satisfaction with the information between the two groups?We conducted an online survey in close collaboration with the Norwegian Epilepsy Association. A total of 1859 respondents (1182 patients with epilepsy and 677 carers for patients with epilepsy) completed a web-based questionnaire. They were asked about epilepsy-related issues on which they had received information, the extent to which they were satisfied with this information, and whether they were being followed up by an ESN or not.Significantly more patients followed up by an ESN had received information about the epilepsy diagnosis, antiseizure drugs (ASDs), routine use of ASD, and risk of seizure-related injuries as compared to those not followed up by an ESN. In addition, patients followed by an ESN were more likely to be satisfied with the information they received. Just above or under half of the respondents had received or were satisfied with information about depression, anxiety, premature death, and sexual wellbeing. Our results indicate that follow-up by ESNs results in improvements in the information provided to patients with epilepsy; ESNs should be an integral part of comprehensive epilepsy service.

The Epilepsy Risk Awareness (ERA) Scale: A New Era for Holistic Risk Assessment in Epilepsy.

Objective: Best care in epilepsy balances protecting people with epilepsy from risks and avoiding undue restrictions in order to improve quality of life. To date, no single risk assessment tool has been widely adopted by both people with epilepsy and health-care professionals such as specialist epilepsy nurses. The present research refined the Epilepsy Risk Awareness (ERA) Scale, a validated and holistic risk assessment tool, by assessing test–retest reliability of each question and incorporating suggestions from patients regarding design and content.Methods: The draft clinical scale was administered to 102 adult participants from the Epilepsy Service at the Royal Free London National Health Service (NHS) Foundation Trust on two occasions. Quantitative and qualitative analyses were conducted—intraclass correlation coefficient (ICC) estimates were used to assess test–retest reliability of questions, and thematic analysis was used to analyze participants' comments and feedback. Following analysis, the ERA Scale was amended. Of the 102 participants, 32 conducted a further review of the revised ERA Scale to test completion time and provide final comments.Results: ICC reliability level estimates varied from “poor to moderate” to “good to excellent,” and four qualitative themes were identified. The ERA Scale was amended accordingly to enhance practicality and usefulness, reducing completion time to approximately 5 min.Significance: The ERA Scale is a validated tool that aims to change clinical practice by standardizing risk assessment in epilepsy, providing a holistic approach that focuses on improved safety and quality of life.

Factors influencing the implementation of Epilepsy Specialist Nurse role: Using the Consolidation Framework for Implementation Research.

Research to support the added value of including Epilepsy Specialist Nurses as members of the multidisciplinary team is developing, yet little information exists on factors influencing the translation of these roles into practice. To describe the enabling and inhibiting factors to the implementation of the Epilepsy Specialist Nurse role in the Republic of Ireland. A qualitative design involving semi-structure interviews, observation and analysis of documents, such as portfolios was used. The sample included 12 Epilepsy Specialist Nurses, 24 multidisciplinary team members, and 35 individuals with epilepsy and family members. Data were analysed using the Consolidation Framework for Implementation Research. Reporting rigour is demonstrated using the COREQ checklist (See Appendix S1). While there was overwhelming support for the role, barriers and enablers were identified across all domains of the Consolidation Framework for Implementation Research. Enablers included national policies and guidelines, leadership from senior nursing and medical colleagues, climate of learning and mentorship, networking opportunities, infrastructural supports and competence of Epilepsy Specialist Nurses. Barriers included the limited consideration of service expansion and the increasingly complex nature of clinical cases on workload capacity. Deficits in infrastructural supports, challenges in relation to role preparation, role implementation and role responsibility, including concerns around lone practitioner models and concerns that the role was a cost-saving measure, also emerged as potential barriers to future sustainability. The Consolidation Framework for Implementation Research offers researchers a pragmatic typology for analysing interrelationships between enabling and inhibiting factors that impact implementation of advanced practice roles, across different evidence sources, disciplines and boundaries. In order to secure role sustainability, managers need to address the rate of service expansion, models of role development, deficits in supports and perceived motivations for role development on the quality, acceptability and sustainability of services provided.

Igniting intersectoral collaboration in chronic disease management: a participatory action research study on epilepsy care in Ireland

ABSTRACT Models of care developed to improve the lives of people with chronic diseases highlight integrated care as essential to meeting their needs and achieving person (patient)-centered care (PCC). Nevertheless, barriers to collaborative practice and siloed work environments persist. To set in motion some groundwork for intersectoral collaboration this study brought two expert groups of epilepsy care practitioners together to engage in participatory action research (PAR). The expert practitioner groups were hospital-based epilepsy specialist nurses (ESNs) and community-based resource officers (CROs). The PAR highlighted, that while the participants share a mutual interest in caring for people with epilepsy, underdeveloped CRO-ESN relationships, arising from unconscious bias and ambiguity can result in missed opportunities for optimal care coordination with consequent potential for unnecessary replication and waste of finite resources. However, through dialogue and critical self-reflection, a growing emotional connection between the disciplines evolved over the course of the PAR. This allowed for buds of collaboration to develop with CROs and ESNs working together to tackle some of the key barriers to their collaboration.

Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study

Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the association between quality of paediatric care, hospital admissions, and all-cause deaths among epilepsy patients. In this longitudinal data linkage study of paediatric epilepsy services in England, we linked unit-level data from round 1 (2009-11) and round 2 (2013-14) of the Epilepsy12 national clinical audit, with death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics. We investigated the association between unit-level performance in involving a paediatrician with epilepsy expertise, an epilepsy specialist nurse, and a paediatric neurologist (where appropriate) in round 1 and the proportion of adolescents (aged 10-18 years) with epilepsy admitted to each unit who subsequently died during the study period (April 1, 2009, to March 31, 2015). We also investigated whether change in Epilepsy12 performance between the two audit rounds was associated with changes in the standardised ratio of observed-to-expected unplanned epilepsy admissions over the same period. In 99 units with data for the analyses relating to paediatricians with epilepsy expertise and epilepsy specialist nurses, 134 (7%) of 1795 patients died during the study period, 88 (5%) of whom died after the transition to adult service. In 55 units with data for the analyses relating to paediatric neurologists, 79 (7%) of 1164 patients died, 54 (5%) of whom did so after the transition. In regression models adjusting for population, unit, and hospital activity characteristics, absolute reductions in total mortality risk (6·4 percentage points, 95% CI 0·1-12·7) and mortality risk after transition (5·7 percentage points, 0·6-10·8) were found when comparing units where all versus no eligible patients were seen by a paediatric neurologist. Units where all eligible patients were seen by a paediatric neurologist were estimated to have absolute reductions of 4·6 percentage points (0·3-8·9) in total mortality and of 4·6 percentage points (1·2-8·0) in post-transition mortality, compared with units where no or some eligible patients were seen by a paediatric neurologist. There was no significant association between performance on being seen by an epilepsy specialist nurse or by a paediatrician with epilepsy expertise and mortality. In units where access to an epilepsy specialist nurse decreased, the standardised ratio of epilepsy admissions increased by a mean of 0·21 (0·01-0·42). Among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care is associated with decreased all-cause mortality in the period after transition to adult services. Reduced access to an epilepsy specialist nurse was associated with an increase in paediatric epilepsy admissions. The Health Foundation.

Supporting and empowering people with epilepsy: Contribution of the Epilepsy Specialist Nurses (SENsE study)

PurposeTo explore how Epilepsy Specialist Nurses in the Republic of Ireland enacted their clinical role. MethodsQualitative descriptive design that involved individual and focus group interviews, observation and documentary analysis. Data were collected from 12 Epilepsy Specialist Nurses working in five hospital-based epilepsy services in Ireland, 24 multidisciplinary team members, and 35 people with epilepsy and their family members were involved. Data were analysed in NVivo using an inductive and deductive approach. ResultsEpilepsy Specialist Nurses work out of a value base that gives primacy to collaboration. active participation, relationship-based care, and respect for the voices of PWE and family members. They are key players in empowering people to self-manage their illness, Core dimensions of their clinical role includes: performing a comprehensive assessment to inform care and treatment; providing person-centred education; monitoring the impact of care and treatment; providing education to family members and significant others; providing psychosocial care to optimise psychological wellness; co-ordinating care to enhance patients’ journey; and quality assuring patient information. ConclusionFindings from this study highlight the key role ESNs played as members of the MDT in building and supporting PWE’s capacity to self-manage their illness. However, they also indicate deficits in the provision of information on sudden unexpected death in epilepsy and how to disclose a diagnosis of epilepsy by the ESN, as well deficits in their knowledge and confidence in supporting people experiencing significant mental health morbidities.

The rhetoric and reality of integrated patient-centered care for healthcare providers: An ethnographic exploration of epilepsy care in Ireland

In line with healthcare reform across the world, the National Clinical Programme for Epilepsy (NCPE) in Ireland describes a model that aims to achieve holistic integrated person (patient)-centered care (PCC). While generally welcomed by stakeholders, the steps required to realize the NCPE ambition and the preparedness of those involved to make the journey are not clear. This study explored the perceptions of healthcare providers in the Irish epilepsy care ecosystem to understand their level of readiness to realize the benefits of an integrated PCC model. Ethnographic fieldwork including observations of different clinical settings across three regions in Ireland and one-to-one interviews with consultant epileptologists (n = 3), epilepsy specialist nurses (n = 5), general practitioners (n = 4), and senior healthcare managers (n = 3) were conducted. While there is a person-centered ambiance and a disposition toward advancing integrated PCC, there are limits to the readiness of the epilepsy care environment to fully meet the aspirations of healthcare reform. These are the following: underdeveloped healthcare partnerships;, poor care coordination;, unintended consequences of innovation;, and tension between pace and productivity. In the journey from policy to practice, the following multiple tensions collide: policy aims to improve services for all patients while simultaneously individualizing care; demands for productivity limit the time and space required to engage in incremental and iterative improvement initiatives. Understanding these tensions is an essential first step on the pathway to integrated PCC implementation.

Evidence-based practice among epilepsy specialist nurses in the Republic of Ireland: Findings from the SENsE study.

To describe how epilepsy specialist nurses in Ireland enact the evidence-based practice dimension of their role. The importance of epilepsy specialist nurses (ESNs) delivering evidence-based care to people experiencing epilepsy is unquestionable, yet research into this aspect of the role is relatively sparse. A qualitative design was used, involving 12 epilepsy specialist nurses working in five units in Ireland, 24 multidisciplinary team members working with them and 35 people with epilepsy and their family members. Data were collected using individual and focus group interviews, observation and documentary analysis. These ESNs were active in accumulating, translating, applying, generating and disseminating evidence. All were actively involved in, or leading audit and service evaluations, and used findings to improve practice. Their research activity mainly consisted of small-scale unfunded research projects. These ESNs acted as opinion leaders and role models in relation to evidence-based practice, including the generation of new knowledge through audit and research. Organisations and managers need to support ESNs by ensuring that they have the necessary resources and competencies to accumulate, translate, apply, generate and disseminate relevant evidence. Future research should explore the impact of ESNs' evidence-based practice on patient outcomes.

The multifaceted role of the Epilepsy Specialist Nurse: Literature review and survey study on patient and medical Staff Perceptions.

Epilepsy is frequently accompanied by learning, behavioural and psychological difficulties, therefore the management of this pathology extends far beyond the use of antiepileptic drugs. The specialist-nurse-service provides a multifaceted management. This study adds new points of view on how epilepsy-specialist-nurses work, the benefits they produce and their feedback. The study was conducted to analyse the role of the epilepsy-specialist-nurse, its competencies, its impact on patients and healthcare system and its relevance in patient and medical-staff perceptions, to give new suggestions on how it can be useful in epilepsy teams. Literature review to analyse epilepsy-specialist-nurse role; a quantitative research with descriptive approach to examine patients' (11) perceptions using a novel-questionnaire; applied qualitative analysis of medical staff (4) perceptions through semi-structured interviews. The epilepsy-specialist-nurse has the competences to manage the epilepsy-related issues that extend beyond medications. Patients value the ability of specialist-nurses to answer their multifaceted needs, to dedicate them enough time to discuss the impact of epilepsy on everyday-life and their feelings, giving suggestions. Doctors collaborating with specialist-nurses recognize their valuable contribute. Doctors give more information on epilepsy and medication-issues: patients prefer to consult a doctor for these issues. The holistic way adopted by specialist-nurses in addressing patients' needs is fundamental to improve patients' health and well-being. Medical and nursing ability to address epilepsy-related issues in a very similar way - in the items analysed - may reveal that specialist-nurses can provide high-quality assistance while achieving cost-savings. It is needed to develop a structured pathway that allows the progression of specialist-nursing, to define a clear job description, and to obtain government recognition.

Managing epilepsy in austerity – Evaluating the utility and value of the epilepsy specialist nurse in an open access model of service delivery. Aneurin Bevan Epilepsy Specialist Team (A.B.E.S.T.)

PurposeHealthcare organisations in the UK primarily measure clinical activity from data collected on numbers of attendances at outpatient clinics, inpatient admissions and procedures performed etc. Telephone contacts with patients are not typically measured as clinical activity. This service evaluation examines the utility and value of the Epilepsy Specialist Nurse (ESN) within an innovative ‘Open Access Model’, giving a breakdown of clinical workload and outcomes. MethodsA retrospective service evaluation analysing all patient encounters made by the ESN and their outcomes, over a 3-month period from the 01/02/2017 to 30/04/2017. ResultsDuring the 3-month data collection period there were 620 patient encounters with 251 different patients. Nurse-led clinic appointments and telephone calls were the two most common types of encounter. Eighteen percent of ESN time was spent on the phone directly addressing patient concerns (368 encounters). Of these calls, 72% led to prevention of a clinic appointment (268 appointments avoided) while only 22% needed a subsequent clinic appointment. The most common outcome of telephone encounters was ‘medication management’ (25%). ConclusionsThe evaluation demonstrates that timely intervention by telephone reduces the need for outpatient appointments and leads to treatment changes being implemented quickly to address individual need.