2017 was another year of outstanding achievement for us. I know that everything we do is only possible because of the team of people who come together to make it happen - all our staff, our volunteers, fundraisers, donors, advisers, supporters and of course trustees. Thank you to everyone who helped to make 2017 such a great year.
I would like to acknowledge and thank all of the members of our Council of Management, the trustees who make up the governing body of the charity, for their dedicated time and effort during the year and for their support and confidence in electing me once again as their Chair. I would especially like to thank Carl Graham and Jenny Jamnadas-Khoda who both left the Council during the year. Their contributions will be missed. However, it was a pleasure to welcome Diane Hockley, elected as a new member of Council in June. Diane brings a wealth of expertise and experience with her.
The Council is conscious of its responsibility to reflect the diversity of the charity’s membership and that of the wider population. A look at Council membership showed that people under the age of 30 were not well represented. So it was a really positive development when Council used its power to co-opt two additional people as Council members to rectify this. After a lengthy recruitment and selection process, in December 2017 Ellie Wilmshurst and Matt Jelfs were appointed as the two co-opted members, with their appointments taking effect from 1 January 2018. We all look forward to working with them in the future.
There is much to cheer about from 2017 but there are two things that I am particularly proud of. We gave evidence to the Pharmacovigilance and Risk Assessment Committee (PRAC) of the European Medicines Agency (EMA) in its inquiry into the safety of sodium valproate and the impact that this anti-epileptic drug can have on women of child bearing age and their unborn children. We highlighted the fact that despite efforts to increase the awareness of women with epilepsy about the risks associated with his drug, there are still significant and unacceptable problems.
With the Epilepsy Society, we surveyed 2,000 women in early 2017. This showed there is still a huge deficit in awareness. 18% of women currently taking sodium valproate did not know it could harm the development and physical health of their unborn child should they become pregnant. More than a quarter (28%) of women taking the drug had not been given information about the risks for their unborn child. More than two thirds (68%) of women taking the drug had not received information materials about this subject specially produced by the Medicines & Healthcare products Regulatory Agency (MHRA) and released in February 2016.
We wait with interest to see what the outcomes of the PRAC inquiry will recommend. We believe that women must be able to choose whether or not to accept the risks associated with taking sodium valproate. However, this must be an informed choice about their care and treatment. To make this possible, we want to see an Enhanced Service Specification (a form of incentive to encourage GPs to take a particular action) developed to try and ensure all women of child bearing age taking sodium valproate receive advice and counselling on the issue.
In November it was tremendous to see the Department for Work and Pensions finally accept that its system of Personal Independence Payments (PIPs) and its method of assessing claims is fundamentally unfair to people with epilepsy. Its decision to change the guidelines used by claims assessors followed our persistent efforts to highlight injustices in the system. The government’s own estimates suggest that these changes will deliver between £36.4 million and £46.8 million a year more in benefit payments to people with epilepsy from 2022/23. This great result perfectly encapsulates why Epilepsy Action is so important and the very real difference we make to peoples’ everyday lives.
Ian Walker, Chair, Council of Management
10 April 2018