MPs Laura Sandys and Cheryl Gillan are asking people affected by epilepsy to keep up the pressure on government to improve services. Following yesterday’s two hour debate on epilepsy in the House of Commons the two MPs expressed their delight that the profile of epilepsy had been raised.
Cheryl Gillan, left, who is also a Vice President of Epilepsy Society, said : ‘There was such a lot of interest. Every single MP who attended the debate has constituents affected by epilepsy.’
Laura Sandys, right, who has epilepsy and is chair of the AllParty Parliamentary Group on Epilepsy, said: ‘It was amazing to hear so many MPs informed from different perspectives on so many different issues. Now we need people to write to their MPs . I want people to come out and talk about epilepsy, to ensure their voice is heard because if it is not we will not get the care that we need.’
Representing our campaign MP Teresa Pearce spoke about the affects of AEDs taken during pregnancy and we were delighted with how she represented us as her wording was very powerful and did show the true extent ALL epilepsy medications have on the foetus. Below is a transcript from Teresa’s speech
Epilepsy Debate – 26th February 2015
Teresa Pearce (Erith and Thamesmead) (Lab): First, I congratulate the hon. Member for South Thanet (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.
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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.
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The Minister of State, Department of Health (Norman Lamb): I take this issue extremely seriously. There has been an EU-wide review of the risks involved. The Medicines and Healthcare Products Regulatory Agency issued new guidance in January, and the British National Formulary has also been updated. The Department is considering the introduction of a “red flag” system to notify GPs of the risks posed to women of child-bearing age, and I personally am very keen to introduce such a system.
Teresa Pearce: I know that the Minister has met some of the mothers involved, and I am very grateful for that.
Women such as the one I have just mentioned are in desperate need of specialised guidance and support from their GPs, but there is no such support at present. GPs should be providing pre-conception counselling and tailored advice, but they do not appear to be taking that responsibility seriously. In 2012, a survey by Epilepsy Action revealed that 26% of women who had been pregnant in the last five years, or were planning to become pregnant, had never received counselling. That puts women and unborn babies at risk.
Pre-conception counselling should be fully embedded in the care pathway of all women with epilepsy and child-bearing potential, and there should be a specialist care pathway for all women with epilepsy to ensure that their pregnancies are flagged as potentially high risk. Every such woman should receive regular input from an epilepsy specialist and an obstetrician, and any breakthrough or worsening of seizures should be investigated as a matter of urgency. Will the Minister tell me what funding, training and planning are needed to implement those steps?
The co-operation of GPs and health care professionals is crucial to ensuring that any strategy actually works. I welcomed the stronger guidance that was released in January by the Medicines and Healthcare Products Regulatory Agency. It states that sodium valproate should not be prescribed to female children, female adolescents, women of child-bearing potential or pregnant women unless other treatments are ineffective or not tolerated. As the Minister said, the guidance followed a Europe-wide review. What steps will the Department take to ensure that it is fully implemented? Every woman taking an anticonvulsant has the right to an informed choice, but we know that information on the effects of sodium valproate on pregnancy was withheld from female patients in 1972. Following the European review in 2014, why has providing information to female patients not been made a mandatory action?
At this moment, the picture is bleak. A recent report entitled “Saving Mothers’ Lives” highlighted the failure to reduce maternal deaths from epilepsy over the past two years. If women with epilepsy were provided with support and health care tailored to their specific condition, it is likely that the number of maternal deaths would be reduced. The science is available to ensure that women with epilepsy can have successful pregnancies with the right support, but that must be universally available to all women with epilepsy since simple measures can decrease the risks associated with epilepsy in pregnancy. I have worked closely with women whose children have suffered from FACS and families who have been affected by the lack of information.
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In particular, I have worked with Janet Williams and Emma Murphy, who run IN-FACT, the Independent Foetal Anti-Convulsant Trust, and I respect and admire them for their relentless commitment and dedication to raising awareness of this issue. I first met them just after I entered the House in 2010, when families were devastated following the withdrawal of legal aid case for a class action against the manufacturers of the drug. After six years of preparation, that trial did not go ahead. I tabled an early-day motion, signed by 82 MPs, urging the Legal Services Commission to reconsider, but it did not. Last year, I wrote to the Department of Health to ask whether compensation would be available. I received a response from the Under-Secretary of State for Health, the hon. Member for Mid Norfolk (George Freeman), who is responsible for life sciences. He said:
“Compensation for people who believe they have been adversely affected by a particular drug is a matter for the judicial system”.
I also received one from the Minister of State, Department of Health, the right hon. Member for North Norfolk (Norman Lamb), who is responsible for care and support, who said:
“it would be inappropriate for ministers to intervene in or comment on matters which must remain for the judicial system.”
The fact is that these families have sought justice and done everything they can, but they have been denied support and denied justice. Will the Government act?