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Emma Friedmann and the sodium valproate announcement

Created:

27 February 2018

Emma Friedmann is a parent carer of her 19 year old son who has fetal valproate syndrome. On the 21st February 2018, she attended parliament when the government announced their decision to review handling of concerns around sodium valproate.

Emma Friedmann

My day in London. 21st February 2018

by Emma Friedmann

I have to start by saying how excited I feel. I knew this day would happen, I just hadn't dare dream for fear of another disappointment. Like most of you, I have epilepsy. I am also a parent carer of my 19 year old son who has Valproate Syndrome. My neurologist reassured me in 1996 and 1998 that the risk of valproate in pregnancy was minimal. Since then I have had a child with complex neurodevelopmental birth defects that have made him disabled for life.

Andy was in the FAC Litigation that had it's legal aid withdrawn in 2010. Since then I have been campaigning for warnings to be issued by the MHRA and for a Judge led Public Inquiry.

I had a week respite and planned some meetings in Parliament with MPs to explain our situation and gather support for an Inquiry. Carol Short, David Body, Mary Toms and her son Cody joined me. Carol and I were chatting to her MP Huw Merriman and he told us Jeremy Hunt, Secretary of State for Health, was making a statement in the House of Commons, would we like to sit in the gallery and watch? Yes please!

Cody Toms, Mary Toms and Carol Short in Parliament cafe

Cody Toms, Mary Toms and Carol Short in Parliament cafe

We were so excited and were led through the ornate corridors by Shakira to the gallery. We'd never been there before, we sat in eager anticipation as Hunt read his statement and our MPs responded with questions and statements.

My MP is Jon Ashworth, the Shadow Secretary of State for Health, he's been very supportive and it was great to see him in the House. I wish Norman Lamb MP could've been there too.

I've waited 6 years for some recognition by politicians that the Valproate story needs investigating and to be there when it was announced was awesome. I didn't realise until Carol told me that I had tears rolling down my cheeks.

I had to do a quick tidy of my eyeliner and get to another meeting with Sir Peter Bottomley.

He has an interest in epilepsy and a constituent with Valproate syndrome. He was very interested and supportive.

Ping ping... Text messages came in from Hugh Pym at BBC and Jason Farrell from SKY saying they were waiting to interview us on College Green. Carol and I with a skip in our step like two giggly school girls raced out of Portcullis House to meet Hugh and then Jason for TV interviews. I still haven't heard them but it was on BBC Radio 4 and SKY TV news.

Emma Friedmann and Carol Short outside Parliament

Emma Friedmann and Carol Short outside parliament

It was Carol's first TV interview and she was brilliant, her nerves disappeared and she got her points across. I did my usual 'I'm delighted but we need a Judge led Public Inquiry'.

We had an hour until our next appointment so we went for coffee and cake then back to Portcullis House to meet Sharon Hodgson MP. That evening we treated ourselves to a Moroccan meal in Earls Court. We rarely dine out and we'd only met once before. It was a perfect end to a perfect day.

Carol Short and Emma Friedmann

Carol Short and Emma Friedmann

Thank you to everyone who has written to their MP, shared emotional stories with the media, shared, liked and commented on Facebook, Twitter and YouTube.

Thank you to the MHRA, EMA PRAC, Clinicians and charities for contributing to the regulatory reviews that have resulted in warnings being printed on the outside of the valproate box and the Valproate Toolkit being made available to patients and doctors.

Now Michael Mansfield QC is collecting evidence from families affected, he will make a submission to the Department of Health that will feed into the Cumberlege review into Valproate, Mesh and Primodos. This is a major step towards a Judge led Public Inquiry into medicine and devices regulation and licensing.

Thank you.

Twitter @emmafriedmann

The views expressed here are those of the author and not necessarily those of Epilepsy Society.