Epilepsy – diagnosis, treatment and care - 4 February 2009

Graham Faulkner was the first Governor to chair a MembersMeet providing an opportunity for members and governors to engage with each other. This was an ideal opportunity for Graham who is also the Chief Executive of the National Society for Epilepsy (NSE) as this session focused on Epilepsy.

What is Epilepsy?
Epilepsy is the tendency to experience repeated seizures that originate in the brain. Epilepsy is the most common serious neurological condition in the UK, and with nearly half a million people with epilepsy nationwide, the services that the National Society for Epilepsy (NSE) provides are vital, explained Stella Pearson - information Services officer at the NSE.

The NSE is the leading UK medical charity for epilepsy and works closely with University College London Hospitals (UCLH) through the National Hospital for Neurology and Neurosurgery, as well as the Institute of Neurology at University College London.

The three main aims at the NSE are the three P’s
Pioneering research,
Promoting awareness and
Providing expert care

Graham Faulkner, NSE’s Chief Executive and one of the stakeholder governor’s at UCLH began the meeting with some basic facts about epilepsy and the startling human and economic costs of epilepsy in the UK.

Professor Sanjay Sisodiya, consultant neurologist, gave a fascinating insight into how diverse the condition is, by describing two different patient ‘journeys’ and how NSE’s research work into genetics focuses on the medical challenges these journeys present.

Stella then showed how NSE aims to support each person’s individual journey with information and support, at the right time for each person, and for their family, friends, employers and others around them. Ropinder Gill, Head of Individual Giving, then closed with an overview of all the different areas of NSE’s work, including our medical and residential care services.

There was time for questions after each speaker, and delegates received free information packs from the NSE. Positive feedback from delegates included the following comments: ‘Congratulations to all. A most constructive, interesting meeting’.

The seminar was followed by an informal mingle between members, speakers, visitors and governors. Patricia Pank and Graham, governors at UCLH, spoke to members about their roles of being a governor and in particular their own governor portfolios as well as finding out from you what you think is important at UCLH.

For further information on epilepsy, see NSE’s website at www.epilepsysociety.org.uk, or call NSE’s confidential helpline on 01494 601 400 (national call rate), Monday – Friday, 10am – 4pm. If you would like a copy of the presentation of seminar please contact the membership office, details below.

Epilepsy - Fact or fiction?

·  Epilepsy is contagious?
False

·  One person in 20 will have a seizure at some point in their life
True – doesn’t mean they have epilepsy

·  Three quarters of people with epilepsy have their seizures controlled by drugs
True – potentially

·  More people have Multiple Sclerosis than have epilepsy
False - Epilepsy affects about 1:135 i.e. Nearly 500,000 in the UK, while MS affects fewer than 100,000 people in the UK.