Advising with empathy and experience

Epilepsy drug warnings in pregnancy.

Women on a powerful epilepsy drug have not been warned about the dangers of taking it during pregnancy, a survey has found. 

The drug, sodium valproate, carries a 10 per cent chance of causing physical abnormalities in children born to mothers who take it.

Babies exposed to the drug also have a 40 per cent risk of developmental problems, including autism, low IQ and learning disabilities.

The medicine is prescribed in the UK under brand names including Epilim, Episenta and Epival, and effectively controls seizures in epilepsy sufferers.

About 20,000 children have been harmed by valproate medications since the 1970s and a toolkit was introduced after the European Medicines Agency (EMA) told watchdogs to improve patient information.

But a survey of 2,000 female epilepsy sufferers revealed 68 per cent of the 475 polled currently taking the drug had not received any information from the toolkit which includes printed warnings in GP surgeries.

The survey, commissioned by Epilepsy Action, Epilepsy Society and Young Epilepsy, also found one in six of those taking sodium valproate did not know of the risks, while 21 per cent had not had a discussion about the issue initiated by a healthcare professional.

The charities want the Government to change how repeat prescriptions of the drug are issued for women of childbearing age, saying they should not be routinely renewed for more than a year without a face-to-face consultation, which should include information about the potential dangers.

Epilepsy Action chief executive, Philip Lee, said: "It is vital that women with epilepsy get the right information about their care and treatment to ensure a healthy pregnancy and minimise the risks associated with sodium valproate.

"Yet these figures suggest that information is not filtering down to women and that conversations about the potential risks are not always happening.  Discussions with a health professional about these risks should be a mandatory part of care for all women with epilepsy so they can make informed choices, ideally before they conceive."

The charities advise women taking sodium valproate not to change medicines or dosage without speaking to their doctor.

There are more than 600,000 people in the UK with epilepsy, which means that they have a tendency to have epileptic seizures.

While electrical activity happens in the brain all the time, a seizure occurs when there is a sudden burst of intense electrical activity but there are many different types of seizure and every person reacts differently.

Sometimes the reason epilepsy develops is clear. It could be because of brain damage caused by a difficult birth, a severe blow to the head, a stroke, or a brain infection such as meningitis. Very occasionally, the cause is a brain tumour.

In around 60 per cent of cases, doctors do not know the cause of the epilepsy. Some types of epilepsy affect young people while others become apparent later in life. Some types last for a short time, while others can be life long.

Epilepsy is usually treated with medication, which tries to reduce, or prevent, seizures.  Other treatments include brain surgery, vagus nerve stimulation and the ketogenic diet.