Epilepsy

Part of Culture, Media and Sport Committee – in the House of Commons at 3:41 pm on 26th February 2015.

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Photo of Teresa Pearce Teresa Pearce Labour, Erith and Thamesmead 3:41 pm, 26th February 2015

First, I congratulate Laura Sandys on securing this debate and on continuing to raise awareness of epilepsy. Although we are on opposite sides of the Chamber, I am sad that she is leaving this place after May, as the work she has undertaken on behalf of people with epilepsy is much respected both within and outside this House.

Epilepsy is a life-threatening, neurological condition that can strike anybody at any age without warning. However, being a woman with epilepsy is not the same as being a man with epilepsy. Epilepsy and its treatment can affect sexual development, menstrual cycles, contraception, fertility and reproduction. That is why I am taking the opportunity today to talk about the urgent need to improve the support and advice available to women of child-bearing age who have epilepsy. In particular, I would like to highlight the importance of enabling women to make informed choices about their drug treatments.

Approximately 139,000 women of child-bearing age have epilepsy, and around 2,400 babies are born each year to mothers taking these anti-epileptic drugs yet women with epilepsy remain uninformed about their choices and medication. They lack the specialised care and support they need, and they are at increased risk of maternal death. Given the repeated concerns raised over decades about sodium valproate and its links to the development of birth defects and foetal anti-convulsant syndrome, commonly known as FACS, this is nothing short of a scandal.

The use of anti-epileptic drugs can present women with various problems before conception and during pregnancy. National guidelines indicate that women of child-bearing age with epilepsy should be made aware of the impact their medication could have on their unborn baby. While GPs should be highlighting these risks, the provision of this specialised care and information is variable at best and non-existent at worst—and this despite the fact that in 2012 the National Institute for Health and Care Excellence recommended a new indicator to encourage GPs to tell girls and women of child-bearing age about the risks posed by anti-epileptic drugs. Sodium valproate was specifically named as a drug that should be discussed. Is the Minister concerned that this information is not widely distributed, and what steps will the Department of Health take to ensure this is remedied as a matter of urgency?

Sodium valproate is considered to be one of the most effective drugs for controlling epileptic seizures, but it has been found to increase the risk of babies being born with cleft palates and spina bifida. It is also associated with a very high risk of major malformations and neuro-developmental impairment. Despite that, a survey found that 25% of mothers were unaware of the risks, which is unacceptable and unjustifiable. If we know that the medication can cause so much harm—it is also prescribed for women who do not have epilepsy, to treat other conditions—why are women not being widely warned of its potential dangers? I accept that it is important to control epileptic seizures during pregnancy, but given that anti-epilepsy drugs increase the risk of foetal malformations, delayed development and foetal and maternal death, women with epilepsy are in an impossible position. They must either continue to take the drugs or risk seizures, both of which pose an increased risk to the mother and the foetus. Pregnant women who abandon their medication are at an increased risk of developing uncontrolled seizures, which can be fatal. About four women with epilepsy die during pregnancy each year, but those deaths could possibly be avoided if the right support were provided.

I am sure that we will talk a great deal about numbers and statistics this afternoon, but let me put into context the way in which epilepsy affects people. I know a woman who, at the age of 15, began to have night seizures in her sleep. She was diagnosed with epilepsy and was prescribed sodium valproate. Eleven years later she married, and she and her husband decided that they wanted children. In 2007, having done some research and understanding the risk that sodium valproate would pose to her baby, she changed her drug. There followed, from 2008, a terrifying five years of daytime seizures she had never had to deal with before. Her previous seizures had always taken place while she was asleep, and she had been seizure-free for 12 years.

The woman was now afraid to go out. She was afraid to get on a bus, and she was afraid to go to work. She was a teacher of primary school children, and she was terrified of having a seizure in front of them, because they would not know what to do. But the bitterest pill of all was finding that, either because of the increased seizures or because of the new drugs, she was no longer ovulating. She had to choose between taking a drug that would stop the seizures but might pose a risk to the baby, and taking a different drug, having the seizures and risking her fertility. That is a very difficult position for women to be in, and they need advice.