Epilepsy is one of the most common serious neurological conditions. (1) Around 600,000 people in the UK have a diagnosis of epilepsy and are prescribed anti-epileptic drugs (AEDs) – the equivalent of 10 per 1,000 people – and an estimated 32,000 new cases are diagnosed each year.(1) The incidence of epilepsy is high in the very young (4 years and under), decreases in the adult population, and peaks in the population of older people (65 years and over),(1) which has important implications for commissioning.
Epilepsy is not a single condition. It is defined by any of the following conditions (23):
(1) At least two unprovoked (or reflex) seizures occurring more than 24 hours apart
(2) One unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years
(3) Diagnosis of an epilepsy syndrome
There are several types of epilepsy, and accurate diagnosis and classification of these can be a complicated process.(1) An epilepsy diagnosis can have important health, social, educational and employment implications and these are associated with substantial non-medical costs that far outweigh the costs of treatment.(26) Epilepsy is also an under-recognised killer, accounting for the deaths of 1,150 people in the UK in 2009 alone – more than the number of deaths due to HIV/AIDS and cot death combined (3)
Commissioning a new service, or developing existing epilepsy care, is seldom easy, and there is no single best way to achieve it.
Living with epilepsy
Benefits of improved diagnosis
Prompt access to epilepsy specialists will help to avoid delayed or incorrect diagnosis, improving access to optimal treatment and reducing the risk of premature death. Better diagnosis and treatment will lead to a reduction in the number of seizures and seizure-related injuries, thereby reducing emergency admissions to secondary care. This is because accurate diagnosis is often based on being able to understand the description of the attacks from witnesses. Fewer incidences of misdiagnosis and incorrect prescriptions of medicines will reduce costs (both medical and legal) to the NHS, and provide better value for money through knock-on effects on other epilepsy services.(15)
Limiting the rate of misdiagnosis will help to reduce the risk of teratogenicity in wrongly diagnosed patients and will prevent patients wrongly diagnosed with epilepsy from facing, for example, unnecessary restrictions in employment and in other areas of life. Better diagnostic services are also likely to reduce any treatment gaps or inequalities, and, through encouraging independent living, improve the rate of employability for people with epilepsy. Finally, patients will have a greater choice of treatment options and a greater sense of empowerment.(15)
Eight key facts about epilepsy
The number of people in the UK diagnosed with epilepsy has risen sharply in recent years. The number of people living with epilepsy in the UK is estimated as 600,000 (1).
Misdiagnosis of epilepsy is common (20–31% of patients are wrongly diagnosed and treated) and can have important consequences in terms of patient outcomes and cost to the NHS (1).
The mortality rate among people with epilepsy is high, despite 42% of epilepsy-related deaths being potentially avoidable (2).
Epilepsy is responsible for a high number of emergency department visits. Reducing non-elective epilepsy admissions may offer significant cost savings. The key is understanding which admissions are avoidable. (21)
An estimated 18% of patients are having unnecessary seizures as a result of not receiving optimal treatment. 52% of patients are seizure free and 18% have refractory epilepsy, where seizures are uncontrolled. (3)
Side-effects of anti-epileptic drugs can include degenerative diseases such as osteoporosis and osteomalacia, which, if left untreated, can result in high additional treatment costs and impaired quality of life.(27)
Pre-conception counselling and precautions taken during pregnancy can reduce the impact on the foetus of mothers with epilepsy. (28)
The non-medical costs of epilepsy far outweigh the cost of treatment. For example, an epilepsy diagnosis can result in unemployment, loss of mobility (e.g. revoked driving licence) and mental health problems. (26)
Reducing non-elective hospital admissions
Using hospital episodes data, commissioners may find that the emergency admission rate for epilepsies is surprisingly high compared with other long-term conditions. For example, in 2008 Wakefield district commissioners found that in the previous three financial years, epilepsy had the highest non-elective admission rate for long-term conditions.(20) Nearly two-thirds of the admissions could be attributed to individuals being admitted on a single occasion and for a length of stay that was less than two days.(20) Non-elective admissions can be reduced by treating people with epilepsy who present in the emergency setting as day cases, where possible, and supporting them with the management of their condition in a community setting.(21) Although the reduction of non-elective admissions should be considered an important driver of effective commissioning, such admissions account for only a small proportion of the total number that a CCG will pay for in a year.(22) However, a much larger scheme developed by the NHS Institute for Innovation and Improvement provides added value to this target.(23) ‘Ambulatory emergency care’ (often referred to as emergency day care) is intended to increase the number of appropriate discharges that occur within 24 hours of individuals arriving in an emergency department.(23) These may be discharges straight from an emergency department, or admissions with a length of stay less than one day.(23)
Benefits of reducing non-elective hospital admissions
Epilepsy is an ambulatory-sensitive condition, meaning that better management in the community or primary care setting can effectively avoid visits to the emergency department and hospital admissions. Development of a local ambulatory emergency care model will reduce the pressure on the emergency care system as a whole, improve management of emergency care workload, and lead to better quality patient outcome and experience. The service may also save the NHS money by reducing hospital bed occupation. It should be noted that social factors may mean that dealing with non-elective hospital admissions on an outpatient basis may not be possible (for example, if the patient is frail and presents after dark).
Clinical targets for reducing non-elective hospital admissions
Commissioners may wish to use local hospital episodes data to identify any groups of people who tend to access emergency care more frequently than other people with epilepsy, for example:(20)
People who wish to receive advice, education and support for their (diagnosed) epilepsy
People who have been referred by a GP to secondary care following a suspected epileptic seizure
People who, following a diagnosis of epilepsy in secondary care, require post-diagnosis support
People who have been misdiagnosed
People who have problems with managing their epilepsy
People whose epilepsy is unresponsive to medication
Children and young people with a diagnosis of epilepsy who are approaching the age of transition to adult services
People needing local care services or living in care homes
Provision of a service for reducing non-elective hospital admissions
Key components of the service could include, but are not limited to: care pathways, information management and technology, accessibility, geographical coverage, referral criteria, avoiding inappropriate referrals, response times and prioritisation, assessment tools, relationship building, goal setting, support interventions, discharge planning and community support.
Shohet C et al. The association between the quality of epilepsy management in primary care, general practice population deprivation status and epilepsy-related emergency hospitalisations. Seizure. 2007; 16: 351–5.
Sander JW. The use of antiepileptic drugs – principles and practice. Epilepsia 2004; 45 (Suppl 6): 28–34.
Stokes T et al. Clinical guidelines and evidence review for the epilepsies: diagnosis and management in adults and children in primary and secondary care. London: Royal College of General Practitioners, 2004.
Purcell et al. Epilepsy prevalence and prescribing patters in England and Wales, Office of National Statistics, 2002.
Moran NF et al. Epilepsy in the United Kingdom: seizure frequency and severity. Seizure 2004; 13: 425–433.
National Institute for Health and Clinical Excellence. Service for the accurate diagnosis of the epilepsies in adults – Commissioning guide. 2008.
National Institute for Health and Clinical Excellence. Commissioning services for the diagnosis and management of the epilepsies. 2013. https://www.nice.org.uk/guidance/CMG47/chapter/1-Commissioning-services-for-the-diagnosis-and-management-of-the-epilepsies
Kuyk J et al. Psychological treatment of patients with psychogenic non-epileptic seizures: an outcome study. Seizure. 2008; 17: 595–603.
LaFrance WC Jr et al. Cognitive behavioral therapy for psychogenic nonepileptic seizures. Epilepsy Behav. 2009; 14: 591–6.
Lewis SA, Noyes J, Mackereth S. Knowledge and information needs of young people with epilepsy and their parents: Mixed-method systematic review. BMC Pediatr. 2010; 10: 103
Wakefield District Primary Care Trust. Service Specification for a Community Support Service for the Epilepsies. 2010.
Rowe S. The idiots’ guide to epilepsy services: part 2. Epilepsy Professional. Issue 18.
Rowe S. How a broader view of emergency readmissions could reduce overall activity levels. Health Services Journal. 2011.
NHS Institute for Innovation and Improvement. The directory of ambulatory emergency care in adults. 2007.
Robert S. Fisher et al. A practical clinical definition of epilepsy. 2014. http://www.ilae.org/Visitors/Centre/documents/Definition2014-RFisher.pdf
Snead K et al. Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents. 2004. http://www.ncbi.nlm.nih.gov/pubmed/15256193
Jennum et al. The social and economic consequences of epilepsy: A controlled national study. Epilepsia. 2011.
Epilepsy Action. Bone Health. 2013. https://www.epilepsy.org.uk/info/osteoporosis-osteomalacia
Epilepsy Action. Statement on preconception counselling. 2011. https://www.epilepsy.org.uk/about/positionstatements/pre-conception-counselling