New Quality and Outcomes Framework indicator for epilepsy care in Great Britain

Epilepsy Action welcomes the proposed new epilepsy-related indicator in the recommendations for 2010/11 Quality and Outcomes Framework.

The indicator, if adopted, would provide an incentive for family doctors to ensure that women taking anti-epileptic drugs (AEDs) receive vital pre-conception counselling.

The Quality and Outcomes Framework (QOF) is a system for measuring the performance and payment of general practitioners (GPs) in the National Health Service. It was introduced in 2004 and financially rewards GPs for "good practice" in their surgeries.

Research shows that children born to women prescribed certain AEDs, such as sodium valproate, have a greater risk of developing neurological and physical disorders including autism (i) and spina bifida (ii) . According to the UK Epilepsy and Pregnancy Register, women taking AEDs are at up to three times more likely to have a child with a major congenital malformation (iii). Epilepsy Action has pushed for the indicator to be included in QOF for some time, and presented its case to the QOF expert panel in 2007.

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This indicator was also included in the recommendations by the All-Party Parliamentary Group on Epilepsy in their 2007 report, Wasted Money, Wasted Lives (iv) .

Pre-conception counselling is designed to reduce the risks to mother and child by allowing women of child bearing age to make informed decisions when planning a family. However, a 2007 survey (v) found only 21 per cent (a fifth) of women with epilepsy received any pre-conception counselling.

Simon Wigglesworth, deputy chief executive, said: "It is vital that women have the opportunity to discuss the options open to them with their healthcare professional. This indicator would demonstrate the health service’s acknowledgement of the importance of pre-conception counselling. We sincerely hope that this indicator is adopted next year to help reduce the risks to both mothers and their children.”

i  Autism Spectrum Disorders Following In Utero Exposure to Antiepileptic Drug, R. L. Bromley, G. Mawer, J. Clayton-Smith and G. A. Baker on behalf of the Liverpool and Manchester Neurodevelopment Group.
2 December 2008.
ii  Morrow J I, Russell A, Gutherie E, et al 'Malformation risks of anti-epileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register', J Neural Neurosurg Psychiatry. 2005 Sep 12.
iii  More about the UK Epilepsy and Pregnancy Register can be found at http://www.epilepsyandpregnancy.co.uk/
iv  Wasted Money, Wasted Lives, a report by the All-Party Parliamentary Group on Epilepsy, June 2007.
v  The 2007 Ideal World for Women Survey was sent to 2000 women with epilepsy, aged over 16. Some 537 usable responses were returned, a response rate of 26.85 per cent.