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Major study shows steep decline in figure for diagnosed epilepsy

5 February 2013

Side view of brain

A collaborative study led by researchers at the UCL Institute of Child Health (ICH) shows a significant reduction in the number of children diagnosed with epilepsy in the UK.

The study, published in the Archives of Diseases in Childhood, used data collated over more than a decade from primary care providers. The decline in positive diagnoses, which shows a cumulative drop of 47%, is largely attributed to the introduction of specialist services, such as the one at Great Ormond Street Hospital (GOSH).

The cause of the decline is thought to be due to a combination of factors: better diagnosis, more rigorous decisions about who to treat, and possibly, a decline in brain injury due to the decline in infections following vaccination programmes.

Data collated from 344,718 children aged 0-14 years showed that the annual incidence of epilepsy has fallen by 4-9% year on year from 1994 to 2008. Overall, the number of children diagnosed with epilepsy between 2003 and 2005 was 33% lower than those diagnosed between 1994-1996.

Study author Professor Ruth Gilbert, Director ofthe Centre for Evidence-based Child Health at the ICH, comments: “Our findings are consistent with those of other European countries and it is very reassuring to see evidence that misdiagnosis rates are down across the board." 

"However, epilepsy remains one of the most common and life-limiting neurological conditions to affect children in the UK. It’s important to emphasize that we are not seeing fewer children presenting with epilepsy in our clinics."

“Now we are seeing a much more rigorous approach to diagnosis and this is due in part to guidance from the National Institute of Clinical Excellence (NICE). It is very troubling for a child and their family to be given an inaccurate diagnosis.”

GOSH is one of only four centres in the country to provide specialist assessment and surgery for children with uncontrolled epilepsy. In this role, the hospital coordinates all the services throughout London, the South East and East of England, and undertakes all complex surgical procedures.

Contact information

For further information, please contact Jenny Gimpel at the GOSH-ICH Press Office on 020 7239 3178, jenny.gimpel@gosh.org.

For genuine and urgent out-of-hours queries call switchboard on 020 7405 9200.

Notes to editors

Great Ormond Street Hospital for Children NHS Foundation Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof.

With the UCL Institute of Child Health, we are the largest centre for paediatric research outside the US and play a key role in training children’s health specialists for the future.

Our charity needs to raise £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research. With your help we provide world class care to our very ill children and their families.