Epilepsy specialist nurses (ESNs) ‘do not feel like they are constantly in control of their work,’ with caseloads of up to 3,500 patients for one or two nurses bringing the workload the ‘closest to being unmanageable it’s ever been,’ new research has found.
Providing care in both the community and in hospitals, the support provided by ESNs is a ‘lifeline’ to some people living with epilepsy, the research into ESN services in Scotland during the Covid-19 pandemic has highlighted.
There has been an ‘exponential rise’ in primary care queries – ‘not just patients, but GPs too,’ said the report ‘Qualitative Research: Epilepsy Specialist Nurse Services during the Covid-19 Pandemic’, published by Epilepsy Consortium Scotland on 21 June.
‘GPs are struggling and they’re reaching out for help,’ it said. But one ESN reported that ‘there was a period during the second wave of Covid-19 for about a month when they were unable to provide any specialist service provision,’ due to ESNs being redeployed.
The research, undertaken by Research Scotland in spring 2022, included extensive interviews with both ESNs and service users, with ESNs describing ‘an extremely busy and varied workload involving a high level of responsibility.’
The report said: ‘Most participants noted that their current workloads feel potentially unmanageable and that they do not feel like they are constantly in control of their work.’ One ESN said ‘it’s the closest to being unmanageable as it’s ever been’.
The ESNs described large caseloads of up to 3,500 patients for one or two nurses, making it ‘impossible to have individualised patient care,’ and said they have waiting lists for their service.
They stressed it is important to ‘demonstrate the impact of their work in preventing issues and problems.’ This is ‘a crucial aspect’ of the work of ESNs, the report said, but participants felt it was ‘hard to demonstrate’ nationally. ‘For example, through providing support at an early stage this may prevent last minute prescriptions, unscheduled visits to the health service, and accident and emergency visits.’
Despite the size of workloads, all participants talked about their focus on patient care and emphasised the importance of accessibility, although concerns were raised that during the pandemic, ‘as ESNs were accessible when patients continue to encounter difficulties accessing other parts of the NHS, such as GPs, this encouraged more people to come to ESNs first, before they contact their GP.’
The ESNs interviewed are all involved in clinical work, assessments and reviews, a telephone helpline service, crisis prevention and visiting patients on wards. They also noted that ‘increasingly they were being asked to provide pharmacological advice to GPs and other medical professionals.’
They spoke about issues around staffing in the NHS in relation to ESNs, general nursing roles, and more widely in terms of administrative support.
Some also felt there was a need for dedicated epilepsy specialist staff across various sectors, including social work and psychology, noting that ‘the prevalence of the condition within society means that there is a need for specialist services.’
All participants stated that they regularly work beyond their contracted hours, and that ‘this was already an issue prior to the pandemic, but has further increased over the past two years.’
Some said their services now have a backlog of cases and waiting lists for clinics, with concern ‘patients were not getting seen in a timely way, negatively impacting work to prevent seizures and manage health conditions proactively.’
The report said service users who took part in the research were ‘very positive’ overall about the support offered by their ESN and ‘felt they received a high-quality, respectful and patient-centred service.’
They said they felt they still had contact with their ESN during the pandemic for assessments and reviews, but the ‘level of informal support had reduced.’
The report said participants ‘valued being able to contact their ESN directly through helplines, but felt that ESN services needed to increase in visibility to ensure everyone could access the service as soon as they were eligible.’
Last year, the Nursing and Midwifery Council updated guidance on how professionals can work together to support women who are taking epilepsy drug sodium valproate, and potential risks.