We exist to improve the lives
of everyone affected by epilepsy

Section 1: Background to epilepsy and national epilepsy guidance

1.1 Background to epilepsy

Epilepsy is one of the most common serious neurological disorders seen in primary care.1
With effective management, up to 70% of people with active epilepsy have the potential to become seizure-free.2

The public perception of epilepsy is that it is a single condition, but in fact there may be as many as 40 different types of epilepsy and at least 40 different types of seizure associated with epilepsy, with some patients experiencing more than one type in their lifetimes3

According to the 2011 report 'Epilepsy prevalence, incidence and other statistics' developed by the Joint Epilepsy Council (JEC):3

  • approximately 1 in 103 people in the UK have epilepsy - a prevalence of 9.7 per 1,000
  • there are an estimated 0.51/1,000 newly treated cases of epilepsy per year
  • according to the mid-2010 population from the Office for National Statistics, this equates to 600,000 patients with epilepsy in the UK today, and 32,000 newly treated cases each year.

For most patients, epilepsy first develops in childhood.3A second peak of new cases occurs in older people.4,5 Most people with epilepsy lead normal lives most of the time, but it has been said that a major part of living with epilepsy is 'feeling different'. The unpredictable nature of seizures is often coupled with a sense of an overwhelming lack of control. Unfortunately, epilepsy is still associated with a considerable degree of real and perceived stigma, and this can be one of the greatest difficulties a person with epilepsy will face. Seizure control allows them to take part in a full and active life in terms of relationships, social life and improved employment prospects. Yet misdiagnosis rates in the UK are between 20-31%,3 and in one study, only 23% of children referred to a tertiary clinic were actually diagnosed with epilepsy.6

Sudden death in epilepsy

People with epilepsy have a two to three times higher risk of premature death than the general population7 and most premature deaths are directly related to the epilepsy itself.7In 2009, 1,150 people died in the UK because of epilepsy, and most of these deaths were associated with seizures.8 The principal cause of seizure-related death is sudden unexpected death in epilepsy (SUDEP), accounting for an estimated 500 deaths each year.7

SUDEP refers to the death of a seemingly healthy person with epilepsy, usually during or immediately following a tonic-clonic seizure.9

A recent Lancet seminar reinforces the importance of ensuring epilepsy is adequately controlled, as it is clear that those patients who experience a higher frequency of tonic-clonic seizures are at increased risk of SUDEP.10 The National Sentinel Clinical Audit of Epilepsy-Related Death revealed that 39% of deaths in adults and 59% of deaths in children were potentially or probably avoidable.7

The risk of sudden maternal death in pregnancy remains higher in women with epilepsy than those with other long-term conditions. A number of these maternal deaths are classified as SUDEP.9 See A.5 for more information and advice from SUDEP Action.

References

1 Lambert MV, Bird, JM, 2001. The assessment and management of adult patients with epilepsy - The role of general practitioners and the specialist services. Seizure. 10: 341-346.

2 Sander JW, 2004.The use of anti-epileptic drugs - Principles and practice. Epilepsia. 45(6): 28-34.

3 Joint Epilepsy Council, 2005. Epilepsy prevalence, incidence and other statistics. [online] (Accessed 12/04/2012).

4 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE..

5 Betts T et al. 1998. Epilepsy needs revisited: A revised epilepsy needs document for the UK. Seizure. 7: 435-446.

6 Ali A et al. 2006. Diagnoses made in a secondary care "fits, faints, and funny turns" clinic. Archives of Disease in Childhood.91(3): 214-218.

7 National Institute for Health and Clinical Excellence (NICE), 2002. National clinical audit of epilepsy-related death.London: NICE.

8 SUDEP Action, 2011. Avoidable epilepsy-related deaths: The case for prevention. [online] (Accessed 7/11/2011).

9 Tomson T, Shorvon S, 2011. Sudden unexpected death in epilepsy. Lancet. 378: 2028-2038.

10 Cantwell et al. 2011. Saving mothers' lives: Reviewing maternal deaths to make motherhood safer: 2006-2008. The eighth report of the confidential enquiries into maternal deaths in the United Kingdom. British Journal Obstetrics and Gynaecology.118 (1): 1-203.

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