Epilepsy is a common neurological condition. There are around 600,000 people in the UK with epilepsy. The incidence of epilepsy is about 50 per 100,000 per annum. The incidence is high in childhood, decreases in adulthood and rises again in older people. The usual prevalence figure given for active epilepsy in the UK is 5-10 cases per 1,000 (MacDonald BK, Cockerell OC, Sander JW. The incidence and lifetime prevalence of neurological disorders in a prospective community‐based study in the UK. Brain 2000;123(4):665-676)

More than one in five people with epilepsy have learning or intellectual disabilities and may need longer appointments and carer support. Women of childbearing age (12 – 50) with epilepsy, will need additional clinical input. As a proportion of the total population of people with epilepsy this equals 23 % (Joint Epilepsy Council, Epilepsy prevalence, incidence and other statistics, December 2011)

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There are approximately 496,000 people with epilepsy in England, 70 per cent of whom could be seizure free with optimal care (Sander, W. J. (2004) The use of Antiepileptic drugs: principles and practice, Epilepsia, 45 (6), pp. 28-34). It is estimated that only around 52 per cent of people with epilepsy currently achieve seizure freedom (Moran, N. M.et al. (2004) Epilepsy in the United Kingdom: seizure frequency and severity, Seizure, 6) pp. 425-433).

Access to specialist review for patients who are not seizure free with existing treatment also needs to be commissioned.

There is no definitive diagnostic test for epilepsy there are many types of epilepsy and achieving a precise diagnosis can be difficult. The estimated medical costs of epilepsy misdiagnosis, almost 30% of which come from diagnosis by a non-neurologists (DH: 2000) ranges from £29 million to £38 million in England5 People with epilepsy die 10 years earlier than the general population. There were 1187 Epilepsy related deaths in England in 2013 (ONS). Epilepsy deaths rose by 31% in males and 39% in females between 1993 and 2005 even though general mortality rates in the population fell.(Ridsale L, Epilepsy mortality and risk factors for death in epilepsy: a population based study. British Journal of General Practice May 2011)


Epilepsy ReportAn analysis of epilepsy deaths over 9 years in the South West found that less than 20% had seen an epilepsy specialist in the previous 12 months and 91% had experienced more frequent seizures in the preceding 3 to 6 months (Shanker, R. A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9-year population sample. Seizure May 2014)


More people with epilepsy spend time in Accident and Emergency and in hospital in some areas of England than in others and this is not explained by population data. The National Audit of Seizure Management in Hospitals showed 43% of A&E attenders with possible seizures were discharged home and 57% were admitted (only 3.5% to a neurology bed). 61% of attenders were known epilepsy patients and half had attended in the past 12 months. 63% of those with a diagnosis had not seen an epilepsy specialist (doctor or nurse) in the last 12 months. Only 15% of those with a diagnosis had received emergency medication before they arrived at hospital and only 28% had a care plan. Only 42% of those with suspected seizures were referred to specialist services and only 52% of those referred attended their appointment (NASH 2013 http://www.nashstudy.org.uk/)



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