APPG Epilepsy Meeting

On Wednesday 2 March 2016 I hosted the All Party Parliamentary Group meeting on Epilepsy of which I am chair. The meeting was on ‘Improving patient outcomes: Establishing a national epilepsy register’ and provided a forum of engagement between parliamentarians, medical professionals and the public.

I was pleased to welcome as speakers Professor Helen Cross OBE, Prince of Wales’ Chair of Childhood Epilepsy, Dr Amit Bali, Clinical Leadership Fellow at Young Epilepsy, and Dr Colin Dunkley, Clinical lead for Epilepsy12, a national audit of children’s epilepsy. Over 48 people attended including experts on epilepsy, those who work in hospitals and charities across the UK, and those who’ve experienced epilepsy in their lives first hand.

The speakers discussed the establishment of a national epilepsy register to record and analyse individual patient care and outcomes, for which support is growing. A national epilepsy register would lead to service level benefits, better planning and design of provision, improved coordination of care and robust auditing. For patients, individual outcome data could be tracked, enabling more person-centred planning and review of care. Professor Cross outlined these benefits of establishing a national epilepsy registry and talked through the cost of it . Dr Bali discussed registry’s across the world, a total of 13, and noted the particular success of the Swedish registry. Dr Bali also identified the 3 mechanisms of a registry: driving changes in practice, comprehensive date collection and cost savings. Dr Dunkley discussed the pragmatics of establishing a registry and highlighted the need for a simple and uniform registry which joins existing individual registry’s.

My colleague Teresa Pearce MP was also in attendance and provided an update on the labelling of sodium valproate and the campaign to raise awareness of the its effects when taken during pregnancy.

A national register could help identify where sufferers are located around the country and enable better patient communication. The importance of joining up existing strands of data, where it already exists, and working together to create a register could help the lives of epilepsy sufferers. A national register would prevent sufferers having to relay personal information to medical professionals over and over again, which will help prove the scheme cost effective in the long term as well. Given the scale of the project, which is hoped to be nationwide, it was also recalled that basic care must come first. The Epilepsy Passport initiative was also discussed, which enables a child or young person to keep their important medical information easily accessible.

The secretariat is provided by Young Epilepsy.