4th September 2006       Epilepsy care in the UK – still suffering from lack of specialism?

 Epilepsy is a notoriously complicated condition to diagnose. Best practice dictates that people who might have epilepsy should be seen quickly by a specialist. The problem, however, is that the UK trails most of Europe in the provision of specialist epilepsy doctors. The consequences of this shortage have been starkly illustrated by a research project in Wrexham, Wales.

456,000 people in the UK have epilepsy. 70% of those people ought to become seizure free if they receive the right treatment. However the research team running the Wrexham project estimated that 56% of adults with epilepsy in the area had never received specialist advice.

The complexity of epilepsy means that misdiagnosis can never be eradicated completely, but in this study misdiagnosis amongst people who had been seen previously by a neurologist ran at 5.6%, jumping to 19.3% for people who had only been seen previously by a non-specialist.

Specialist doctors are also more likely to consider the use of newer anti-epileptic drugs. ‘Newer’ doesn’t always mean ‘better’, but the launch of a considerable number of new anti-epileptic drugs in recent years once again highlights the need for specialist assessment and care.

Dr Melanie MacLeod, director of care at Independence Homes, commented on the research findings:
“The lack of specialist care for people with epilepsy in the UK has real implications for people’s quality of life. Of course we can’t guarantee to reduce the seizure frequency of our service users. However we can help them to receive the best possible specialist care. Sometimes that does lead to a reduction in seizures.”

Independence Homes was formed in 1997 specifically to help people with epilepsy and learning difficulties to fulfill their potential and achieve their own objectives. Independence Homes provides accommodation and support for adults living with epilepsy, other medical needs and learning disability. Today, Independence Homes employs almost 200 staff and support over 50 adults in both supported living programmes and community based residential care.

For a detailed report of the Wrexham project please refer to Seizure, published by Elsevier (www.elsevier.com): Epilepsy in the UK: misdiagnosis, mistreatment, and undertreatment? The Wrexham area epilepsy project (JP Leach, R Lauder, A Nicolson, DF Smith)

For further information on Independence Homes please contact Jacqui Barclay on 0845 390 1234.