Inequalities in epilepsy in the UK: action is needed now

Globally, there are 50 million people with epilepsy and 5 million new cases are diagnosed annually.1World Health OrganizationEpilepsy.https://www.who.int/news-room/fact-sheets/detail/epilepsy#:~:text=Globally%2C%20an%20estimated%205%20million,diagnosed%20with%20epilepsy%20each%20yearDate: Feb 7, 2024Date accessed: June 29, 2024Google Scholar In the UK, epilepsy prevalence is 0·9% based on primary care data, but this prevalence is unevenly distributed by population and geography.2Wigglesworth S Neligan A Dickson JM et al.The incidence and prevalence of epilepsy in the United Kingdom 2013–2018: a retrospective cohort study of UK primary care data.Seizure. 2023; 105: 37-42Summary Full Text Full Text PDF PubMed Scopus (0) Google Scholar 22·2% (95% CI 19·6–25·1) of people with intellectual disability have comorbid epilepsy.3Robertson J Hatton C Emerson E Baines S Prevalence of epilepsy among people with intellectual disabilities: a systematic review.Seizure. 2015; 29: 46-62Summary Full Text Full Text PDF PubMed Google Scholar While seizure medications are a central component of treatment, pharmaco-resistance to epilepsy medication is an important issue.4Shankar R Marston XL Danielson V et al.Real-world evidence of epidemiology, patient characteristics, and mortality in people with drug-resistant epilepsy in the United Kingdom, 2011–2021.J Neurol. 2024; 271: 2473-2483Crossref Scopus (1) Google Scholar In the UK, more than 60 000 emergency department attendances per year (ie, 2%–3% of all emergency department attendances) are suspected to be related to seizures.5Hughes-Gooding T Dickson JM O'Keeffe C Mason SM A data linkage study of suspected seizures in the urgent and emergency care system in the UK.Emerg Med J. 2020; 37: 605-610Crossref PubMed Scopus (0) Google Scholar Influencing interlinked factors for the high number of hospital admissions include poor quality of life, social deprivation, mental health issues, and lack of seizure management knowledge.6Burrows L Lennard S Hudson S et al.Exploring epilepsy attendance at the emergency department and interventions which may reduce unnecessary attendances: a scoping review.Seizure. 2020; 76: 39-46Summary Full Text Full Text PDF PubMed Scopus (9) Google Scholar The health burden can also result in considerable societal cost. Epilepsy is estimated to cost the UK £1·7 billion (0·07% of UK's 2019 gross domestic product), more than half of which is due to lost productivity.7Epilepsy ActionNeurology crisis costing UK £96bn—economist report.https://www.epilepsy.org.uk/neurology-crisis-costing-uk-96bn-economist-report#:~:text=Epilepsy%20affects%20937%20per%20100%2C000,is%20due%20to%20lost%20productivityDate: March 26, 2024Date accessed: June 29, 2024Google Scholar In The Lancet Public Health, Kathryn Bush and collegues8Bush KJ Cullen E Mills S et al.Assessing the extent and determinants of socioeconomic inequalities in epilepsy in the UK: a systematic review and meta-analysis of evidence.Lancet Public Health. 2024; 9: e614-e628Summary Full Text Full Text PDF Google Scholar identify UK specific disparities and associations with epilepsy. Their systematic review and meta-analysis of 26 studies indicated that moderate to high socioeconomic deprivation levels was associated with increased epilepsy incidence across the lifespan compared with low socioeconomic deprivation (incident rate ratio 1·34, 95% CI 1·16–1·56). However, the authors found little research evidence for adverse outcomes. The conclusions that can be drawn from the existing published literature were hampered by ascertainment of epilepsy self report, absence of confounder adjustments, and definitions of deprivation. The novelty of the study by Bush and collegues8Bush KJ Cullen E Mills S et al.Assessing the extent and determinants of socioeconomic inequalities in epilepsy in the UK: a systematic review and meta-analysis of evidence.Lancet Public Health. 2024; 9: e614-e628Summary Full Text Full Text PDF Google Scholar is its focus on the UK, and, particularly, its effort to unpack specific aspects to aid the development of locally relevant prevention strategies considering the particularities of the UK health and social care system. Lessons learnt can likely be transferred to other high-income countries. We are of the opinion that Bush and colleagues8Bush KJ Cullen E Mills S et al.Assessing the extent and determinants of socioeconomic inequalities in epilepsy in the UK: a systematic review and meta-analysis of evidence.Lancet Public Health. 2024; 9: e614-e628Summary Full Text Full Text PDF Google Scholar rightly make a point about early prevention but also recognise that the interplay and intersectional aspects of epilepsy will need many years to materialise across all areas. We recommend a systematic approach around three pillars: clinicians, patients, and society. First, the challenges of a scarcity of neurologists and epilepsy specialists and the geographical variation in expertise and specialised skillsets need addressing.9Fletcher NA Wilson M Riley J Nicolson A The Walton Centre neurology network—an equitable, sustainable and deliverable model for a large-scale neurology service.Future Healthc J. 2019; 6: 123-128Crossref Google Scholar Employment of nurses skilled in epilepsy care, joint professional case reviews, and pharmacy involvement in prescribing are priority considerations. Particular focus should be groups with higher health burden, such as people with intellectual disability. Second, there is an urgent need to engage people with epilepsy at both patient and system levels. Education and counselling are important components, but ensuring effective delivery of interventions is extremely challenging in our current conventional models of health care, which is further compounded by staff shortages. Finally, social care has an important role in supporting people with epilepsy with chronic or specific needs.10Newman H Rudra S Burrows L et al.Who cares? A scoping review on intellectual disability, epilepsy and social care.Seizure. 2023; 107: 35-42Summary Full Text Full Text PDF PubMed Scopus (0) Google Scholar Staff need epilepsy-specific education and training, a person-centred care approach, and supervision. Other socioeconomic challenges include poor housing and low social mobility, which will take longer to address and, therefore, medium-term solutions might be the adoption of softer measures, including reasonable adjustments (eg, flexible working hours to accommodate medical appointments or the side-effects of medication and a work or home space that minimises the risk of seizures), which could have a positive effect on medium and long term consequences. There are still misconceptions about the epilepsy and stigmatisation of those diagnosed and their families worldwide and it is key for awareness to be raised. To address the burden of the disease it is essential to implement population-wide approaches to tackle those issues specifically bound to well-known socioeconomic inequalities. RS is Associate Dean for Academic training Royal College of Psychiatrists, Deputy Chair for RCPsych Intellectual Disability faculty, Chair for Cochrane review for pharmaceutical treatments in people with intellectual disability, Deputy Research and Governance Director for CFT, Project Management Expert at UK Epilepsy Deaths Register, Clinical Associate Professor at Exeter Medical School, and Fellow at Falmouth University; and is part of the RCPsych international HONOS-LD update committee, ILAE Equity, Diversity & Inclusion Task Force, and James Lind Epilepsy Research UK Priority Setting Partnership project. AH declares no competing interests. Assessing the extent and determinants of socioeconomic inequalities in epilepsy in the UK: a systematic review and meta-analysis of evidenceSocioeconomic inequalities in epilepsy incidence are evident in the UK. To develop an evidence-based public health response to epilepsy, further research is needed to understand the populations affected, factors determining the association, and the extent of inequalities in adverse outcomes. Full-Text PDF Open Access