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Epilepsy Action is a working name of British Epilepsy Association.

British Epilepsy Association is a Registered Charity (Registered in England No. 234343) and a Company Limited by Guarantee (Registered in England No. 797997).

© Epilepsy Action 2008

20 February 2008

First ever UK epilepsy care plan announced by Welsh Assembly

New plans to improve care for thousands of people in Wales with epilepsy have been announced by Welsh Assembly Government health minister Edwina Hart.

The plans include measures to reduce the incidence of epilepsy, help people to self-manage their condition and provide more care closer to people’s homes – reducing the likelihood of hospital admission. It is estimated that well-managed medication procedures can help around 70 per cent of people with epilepsy to be seizure-free – thereby reducing the risk of emergency admission. It is the first time such a plan has been outlined in any UK country.

Other measures include:

ensuring quicker assessment, diagnosis and treatment for people with epilepsy;
requiring each local health board to develop a local action plan for epilepsy and ensure that multi-disciplinary teams are in place; and,
developing appropriate evidence-based care pathways to ensure people with epilepsy are treated in the right place, at the right time and by the right person.

The All Wales Epilepsy Forum, an umbrella alliance for voluntary sector groups supporting epilepsy in Wales, has applauded the plans. Epilepsy Action's Ann Reynolds, chair of the Forum, said:

"We applaud these plans and are delighted to have worked with the Welsh Assembly Government in producing this ground breaking initiative. If the plans are implemented fully we believe they should lead to real improvements in epilepsy services and have a positive impact for people with epilepsy in Wales.

"This plan is the first of its kind in the UK. I am pleased that the Welsh Assembly Government is leading the way in improving the care and treatment for people living with epilepsy."

Consultation on the plans will close on 2 May 2008.

Epilepsy groups challenge patients to take charge of their health

Less than half of patients with active epilepsy in the United States are informed by their doctors about treatment options, according to a survey by the American Epilepsy Society and the Epilepsy Foundation.

Fewer than half (47 per cent) of those surveyed said their doctor discussed alternative treatments with them, with neurologists more likely to do so than primary care providers. Least likely to be discussed is surgery, a finding that the authors suggest means that a significant number of potential surgery candidates might not be aware of this option. The survey also suggests that people with poorly controlled seizures do not get referred to specialised epilepsy centres that focus on more difficult-to-control epilepsy.

Around a quarter of patients surveyed said they did not know what their doctors would rank as a significant improvement in seizure control. While more than half (51 per cent) of all patients feel that a 90 per cent reduction or no seizures at all would be a significant improvement, only 35 per cent feel their doctor would agree.

Sandra Dewar, of the University of California, Los Angeles Seizure Disorder Center, commented on the findings:

"This suggests a gap in communication and a lack of mutual agreement on what the treatment goal should be. Social issues also are frequently left unaddressed. Only about half of those surveyed said their doctors discussed epilepsy's impact on day-to-day activities, mood, and difficulty sleeping. Patients expressed a wide variety of concerns and fears regarding their epilepsy, such as telling others, being treated differently, inability to drive, becoming a burden on the family, and fear of dying -- issues that are infrequently discussed with patients."

Health watchdog issues warning of anti-epileptic drugs and suicide tendencies

The US Food and Drug Administration (FDA) has issued new information to healthcare professionals over a risk of people taking anti-epileptic drugs (AEDs) having suicidal tendencies.

The FDA has analysed reports of suicidal behaviour (completed suicides, suicide attempts and preparatory acts) or having suicidal ideas from nearly 200 studies of 11 AEDs. In the analysis, patients taking AEDs had approximately twice the risk of suicidal behavior or ideas (one person in 232) compared to patients taking a placebo (one person in 454).

The increased risk of suicidal behavior ideas was seen as early as one week after starting the AEDs and continued through 24 weeks. The results were generally consistent among the eleven drugs. Four of the patients who were taking one of the AEDs committed suicide, whereas none of the patients in the placebo group did.

As most trials included in the analysis did not extend beyond 24 weeks, the risk of suicidal thoughts or behavior beyond 24 weeks could not be assessed.

The FDA has suggested to healthcare professionals that all patients who are currently taking or starting on any AED should be closely monitored for notable changes in behaviour that could indicate the emergence or worsening of suicidal thoughts or behavior or depression.

Reports of seizure frequency may be inaccurate in patients with partial epilepsy

Asking people who have partial seizures how often they have seizures does not appear to provide an accurate count, according to a report in the journal Archives of Neurology.

The report suggests that reminding patients to record their seizures in a diary may not help, because patients may be unaware of some seizures.

The authors write that seizure frequency is the primary outcome measure for individual treatment and for clinical trials. Seizures can be detected objectively using video EEG (electroencephalogram) monitoring; however, because this method is expensive, it is used only in certain patients for short time periods. Doctors most often ask patients to keep seizure diaries.

Dr Christian Hoppe and colleagues at the University of Bonn Medical Centre studied 91 adult with partial seizures who were admitted to a video-EEG monitoring unit in 2004 and 2005. The group were fitted with electrodes and monitored by video for an average of 4½ days. All were asked to keep a seizure diary and to push a warning button summoning a nurse when they felt a seizure coming. About half (42) were randomly assigned to receive daily reminders about documenting all seizures during the monitoring period.

Patients experienced a total of 582 partial seizures during monitoring but did not report 323 of them. Patients’ level of consciousness before the seizure appeared to affect their reporting rate - 85 per cent of all seizures that occurred during sleep were unreported, compared with 32 per cent of seizures that occurred when patients were awake. Of the seizures recorded by video-EEG, 43 per cent occurred during sleep, while only 13.9 per cent of seizures reported by patients occurred during sleep.

“Patients activated the push-button alarm ahead of 51 seizures (8.8 per cent) but failed to document 17 (33.3 per cent) of these seizures,” the authors write.

Reporting also varied by seizure type. Fifty-one percent of patients did not document any complex partial seizures, which arise from a single brain region and impair consciousness; a total of 73.2 percent of these types of seizures went unreported. This compares with 26.2 percent of simple partial seizures—which do not affect awareness or memory - that were not reported.