Epilepsy is one of the most common neurological disorders, affecting about 5 to 10 people in every 1000 in the UK, yet health services are failing many patients with this often complex and disabling disorder. The week of May 17–23, 2009, marked the UK's National Epilepsy Week; events included charity-led initiatives to lobby politicians about the crucial need for greater investment to address the serious shortfalls in epilepsy services in the UK. Plans to improve epilepsy services have been outlined in the government's Action Plan for epilepsy in 2003, and guidelines on the diagnosis and management of epilepsy include those published by the National Institute for Health and Clinical Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN). These have led to some welcome changes in services, for example through the creation of more multidisciplinary tertiary referral centres and the provision of about 220 epilepsy specialist nurses in the UK. Despite some positive steps, however, many of the aims of these initiatives and guidelines are far from being met and the picture is still bleak for many patients. About 70 000 people with epilepsy in England alone have inadequate seizure control, and the number of surgical procedures performed falls far short of the number of patients who would benefit from surgery. Rates of misdiagnosis are alarmingly high, with an estimated 74 000 people being treated unnecessarily with antiepileptic drugs. Approximately 1000 people in the UK die each year from epilepsy-related causes, and about 400 of these deaths are thought to be avoidable. A major cause for concern is the wide regional variation in the quality and extent of services available, with about half of all patients not having access to an epilepsy specialist. In Scotland, Northern Ireland, and Wales, people living in rural areas have particularly poor access to services. The NICE and SIGN guidelines recommend that everyone with suspected epilepsy should be referred to an epilepsy specialist, although defining such a specialist has proven difficult. And in reality, the ongoing care of many adult patients remains with a general practitioner, in contrast to many other European countries, where patients would be immediately referred to a neurologist. This reflects the relative dearth of neurologists in the UK, which has among the lowest number of neurologists for its population size in Europe. Furthermore, clinical expertise in epilepsy is sorely lacking and, according to the NICE guidelines, another 750 epilepsy specialist nurses are needed in England alone. These specialist nurses might help to fill the gap in epilepsy expertise and provide more coordinated care for patients. The NICE guidelines also state that after a first seizure, all patients should be seen urgently (ie, within 2 weeks) by a specialist. But, with the exception of a small number of health-care trusts that are able to make fast-track referrals, most trusts have waiting times in excess of 2 weeks (a target that, even if met, might not be soon enough for some patients) and up to 6 months in some cases. This in turn leads to delays in appropriate investigations and diagnosis and thus delays in treatment. Care plans for the long-term management of epilepsy and transition services for patients moving from paediatric to adult care are the exception rather than the rule. In addition to the personal distress caused by inadequate provision of epilepsy services, there is a high economic cost. In its 2007 report, the All Party Parliamentary Group on Epilepsy estimated that a staggering £134 million (US$220 million) a year (in direct and indirect costs) is needlessly spent on misdiagnosis of epilepsy. Inadequate control of epilepsy can lead to long-term disability and better management could generate savings of around £55 million a year in England through reduced payments of the Disability Living Allowance. According to the report, the sums needed to improve epilepsy services would amount to less than these combined costs, yet 2 years on there are few signs of progress. Although the political will to improve health services for patients with epilepsy is apparent in parliamentary plans and support for changes to services, the much-needed increases in funding are lacking. Without greater investment and awareness of the personal and economic burden of epilepsy, this potentially devastating condition is still a low priority for many health-care providers. Now is the time for policy makers to translate words into action and increase investment in services to improve the lives of the many people with epilepsy.
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Aug 25, 2021
Richard Machin + 1
