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How you helped our sodium valproate campaign by filling in our survey

Created:

26 October 2017

Nicola Swanborough standing in the meeting room at the Euuropean Medicines AgencyThank you to everyone who took part in our sodium valproate awareness survey. Our content manager, Nicola Swanborough, explains how your voice helped us raise awareness of risks associated with the drug, in the House of Commons, across all media channels including the BBC, and across Europe.

 

In August we carried out a survey to find out how aware women and girls of childbearing age are of the risks associated with the epilepsy drug sodium valproate during pregnancy.

Although the medication is very effective in controlling seizures and for many is a life-saving drug, it can pose a serious risk for babies exposed to the medication in the womb. Ten per cent of babies born to women who are taking sodium valproate have physical disabilities and up to 40 per cent go on to experience learning difficulties.

Survey results

Over 2,000 women took part in our survey, carried out in conjunction with Epilepsy Action and Young Epilepsy. The results showed that in spite of a valproate toolkit introduced last year to inform women and healthcare professionals about the risks, around 20 per cent of women taking sodium valproate either don't know of the risks or haven't been given any information about them.

And worryingly, 68 per cent have not received the valproate toolkit developed by the Medicines and Healthcare products Regulatory Agency.

Read the full survey results.

News coverage

These statistics - your voices - enabled us to win valuable airtime on the BBC, with BBC News covering the story on the 6pm and 10pm news on 21 September. By the next morning BBC Radio 4's flagship programme Today was talking about the statistics and the issues around valproate.

At 10am, our chief executive Clare Pelham was on Radio 4's Woman Hour explaining the crisis which has affected thousands of families in the UK since sodium valproate was first licensed here in 1974. It gave her a platform to call on health secretary Jeremy Hunt to make it mandatory for all women taking sodium valproate to have a yearly review before their prescription is renewed.

A photograph on the wall in the Woman's Hour studio shows presenters Jane Garvey and Jenni Murray.

From Woman's Hour, Clare was rushed to the Victoria Derbyshire studios, three floors underground at the BBC where, with Deborah Mann and her daughter Branwen, they were able to explain the impact of sodium valproate. Deborah was prescribed 5,000mg of sodium valproate during pregnancy. Both her daughters - Branwen and her sister Rhonnie - were born with physical and neurodevelopmental disabilities. Branwen knows that she could die at any time.

 

Clare was then whisked to a garden near the BBC for a walk-and-talk interview with the BBC One 'O Clock News.

By this time the World Service were calling and we hurried back to BBC Broadcasting House but in the short, 10 minute walk, news broke that Uber had lost its licence in London and the news agenda moved on. We were dropped.

 

Watch and listen to a selection of Clare's interviews at the BBC. 

European Medicines Agency public hearing

Clare Pelham is interviewed at the European Medicines Agency by ITN News.

Clare Pelham, left, being interviewed by ITN New at the European Medicines Agency.

The BBC took complete ownership of the sodium valproate story. Their two journalists, Sophie Hutchinson and Nicki Stiastny had been working closely with us at Epilepsy Society since last year, assimilating facts and building the story in anticipation of the public hearing into sodium valproate at the European Medicines Agency (EMA) on 26 September. This was the first time the EMA had held a public hearing as part of a safety review of a drug.

Although other broadcasting channels had been reluctant to follow up the BBC's exclusive on sodium valproate, they waited for their moment to come at the hearing. Clare Pelham was submitting evidence at the hearing on behalf of Epilepsy Society and Epilepsy Action, and again the statistics from our survey were presented to an audience of healthcare professionals and women from across Europe.

Clare was again interviewed for the BBC and also ITN with Channel 4 and Sky News also picking up the story.

You can read presentations from Clare Pelham and from our director of genomics Professor Sanjay Sisodiya  

Clare's submission is on page 9 and Professor Sisodiya's is on page 40.

EMA full summary report. 

We had the opportunity to share the survey results again on 13 October at a further meeting of the European Medicines Agency, when recommendations from the public hearing were discussed in more detail.

We are expecting results from the hearing to be announced later in the year.

House of Commons debate

Norman LambOn 13 October we also learned that Norman Lamb MP had been successful in tabling a motion about sodium valproate in the House of Commons on 19 October. With just six days to prepare, we were able to brief MPs, again using our survey results to highlight the lack of awareness around sodium valproate risks during pregnancy.

The two-hour debate was lively, full and unanimous in MPs' desire to ensure that all women who are prescribed sodium valproate have a right to be told of the risks during pregnancy. Time and again, MPs from across the country quoted our survey.

Read our report of the debate  or read the full Hansard report

Correspondence with health secretary Jeremy Hunt

But not all the activity around sodium valproate has been in the public arena. While we were pleased to see that parliament was speaking out about sodium valproate, we also desperately want the Government to act, and to act now.

Clare Pelham has been in correspondence with health secretary Jeremy Hunt, calling for mandatory reviews for women taking sodium valproate, before their prescriptions are renewed. Lord O'Shaughnessy, parliamentary under secretary of state for health has replied on behalf of Mr Hunt, underlining his recognition of the need for further action, but the conversation is ongoing.

 

You can read the correspondence between Clare Pelham and Jeremy Hunt here.

First letter from Jeremy Hunt.

Second letter from Jeremy Hunt.

Correspondence with Democratic Unionist Party leader, Arlene Foster

Clare has also written to Arlene Foster, leader of the Democratic Unionist Party and First Minister for Northern Ireland. Ms Foster has pledged her support for Epilepsy Society's campaign for mandatory reviews for women taking valproate. Clare will also be meeting Lee Reynolds director of policy at the DUP as well as other key figures from across all parliamentary parties who may be able to influence our campaign.

DUP leader Arlene Foster

Arlene Foster's letter 

But we could not have done it without you. Our campaign is your campaign and our survey is your survey. By taking 15 minutes to fill in our survey over the summer, you have enabled us to raise the voices of all women and girls taking sodium valproate, throughout parliament. across Europe, and across all forms of media.

Making progress

For more than four decades, women have too often been prescribed sodium valproate without being told of the full risks during pregnancy. The result has been thousands of babies born with avoidable disabilities.

We are as close as we have ever come to ensuring that all women and girls are given the full facts, in a timely manner and on a regular basis, so that they can make an informed choice about their treatment and pregnancy. For some women - those for whom sodium valproate is the only drug that will control their seizures - that choice remains a difficult one as is so often the case with epilepsy.

But the world is listening and we won't let politicians and policy makers off the hook. We feel cautiously confident that issues around sodium valproate will finally be resolved. In fact we know they will, because we won't stop until they are.

And we would like to thank each one of you who filled in our survey or shared it with others through social media or in conversation. By standing with us, you are helping to turn the tide.