Supporting and empowering people with epilepsy: Contribution of the epilepsy specialist nurses (SENsE study)
Introduction from Dr Markus Reuber, editor-in-chief of Seizure
It is now well-established that epilepsy is much more than seizures. At least in temporal and epidemiological terms there is a clear bidirectional relationship between epilepsy and mental health problems including depression, anxiety and suicidality – and it is highly plausible that there is a causal bidirectional relationship between these problems as well (1). Aside from this, epilepsy is a social disorder. Indeed, the social consequences of having epilepsy exceed the medical impact of the condition for most people living with seizures (2). Furthermore, epilepsy and its treatment have many implications for people’s lives – affecting important personal matters such as family planning and employment opportunities but also more mundane issues such how to cook, clean themselves or look after their young children.
Despite the recognition of the broad impact of epilepsy on the lives of those affected, epilepsy services (even or perhaps especially in high income countries) struggle to provide support with the non-seizure manifestations of epilepsy. Neurologists or psychiatrists (the professionals who most commonly diagnose epilepsy and oversee its pharmacological treatment) may screen for mental health symptoms but rarely offer meaningful advice on the social consequences of epilepsy or any practical questions their patients have to deal with because of their epilepsy, and patients may not consider it appropriate to ask a doctor about these matters. Non-epilepsy experts (for instance in primary care or non-medical professions such as social work) may feel that they lack the knowledge to offer advice on questions related to epilepsy. This leaves many people with epilepsy to their own devices and means that they do not have access to high quality individualized advice about epilepsy-related questions, which may well affect their quality of life more than the seizures themselves.
My editor’s choice paper from the current volume of Seizure is a study by Agnes Higgins et al. describing and assessing the role of epilepsy nurse specialists (ENSs) (3). Of course, ENSs know a lot about seizures, but they are also ideally placed to fill the gaps in service provisions for non-seizure manifestations of epilepsy, which exist in many medically dominated epilepsy services. This qualitative study based on data from 12 ENSs, 24 multidisciplinary team members as well as 35 people with epilepsy and their family members captured working practices across five Irish epilepsy services. The findings indicate how crucial the support is which ESNs provide in terms of empowering people to self-manage their illness, performing comprehensive needs’ assessments, providing person-centred education, monitoring the impact of care and treatment, providing education to significant others and psychosocial care to optimise psychological wellness, co-ordinating care and quality assuring patient information. However the findings also show that, in order to function ESNs need to be embedded in and complemented by a multidisciplinary team. ESNs enhance medically oriented services they do not replace them. As such, this paper makes a useful addition to the evidence-base for ESN services, which has recently been summarized by the ESPENTE team (4). My editor’s choice paper should be read in the context of all the other evidence underlining the importance of ESNs for comprehensive epilepsy services. This evidence has recently been compiled and beautifully presented by the ESPENTE collaborators in a freely available interactive evidence map (do take a look at: https://espente.epilepsy.org.uk/).
- Hesdorffer DC, Ishihara L, Mynepalli L, Webb DJ, Weil J, Hauser WA. Epilepsy, suicidality, and psychiatric disorders: a bidirectional association. Ann Neurology 2012;72:184-91.
- Jacoby A, Snape D, Baker G. Epilepsy and social identity: the stigma of a chronic disorder. Lancet Neurology 2005;4:171-78.
- Higgins A, Downes C, Varley J, Doherty C, Begley, Elliott N. Supporting and empowering people with epilepsy: Contribution of the Epilepsy Specialist Nurses (SENsE study). Seizure 2019:71:42-49.
- Campbell F, Sworn K, Booth A, Reuber M, Grünewald R, Mack C, Dickson JM. Epilepsy Specialist Nurses The Evidence (ESPENTE): a Systematic Mapping Review.