Maxine Smeaton
Chief Executive, Epilepsy Research UK
The numbers associated with epilepsy are staggering. As one of the most common serious neurological conditions, it affects around 65 million people worldwide.1
Here in the UK, there are currently 600,000 people with a known diagnosis of epilepsy – that’s more than multiple sclerosis, motor neurone disease and Parkinson’s disease combined. An astounding 100,000 emergency admissions are due to epilepsy each year, costing the NHS an estimated £1.5 billion annually.2
Lack of investment into epilepsy research
Despite the high prevalence of this devastating condition, the only small number associated with epilepsy, is the amount of research funding it receives. Research funding into epilepsy lags behind other, less prevalent conditions.
This alarming research funding gap has impeded progress, meaning a third of people continue to live with uncontrolled seizures that do not respond to treatment. This equates to over 180,000 people for whom research into treatments has not yet delivered.
Impact of seizures on daily life
For those living with the constant threat of seizures, virtually every life choice from education, careers to starting a family is affected. Perhaps unsurprisingly, people with epilepsy are also at increased risk of depression, social isolation and unemployment. Tragically, there are 21 epilepsy-related deaths every week in the UK.
As the only UK charity exclusively dedicated to driving and enabling research into the condition, Epilepsy Research UK is working to correct this unbalanced equation. Earlier this year we launched a campaign to highlight the disruptive, interruptive impact of epilepsy. Our #ALifeInterrupted campaign aimed to draw attention to the stark lack of funding into epilepsy and call for more investment to accelerate the pace of new discoveries.
An astounding 100,000 emergency admissions are due to epilepsy each year, costing the NHS an estimated £1.5 billion annually.1
Research into epilepsy receives only 7% of neurological research funding and just 0.3% of the £4.8 billion total spent on health-related research in the UK.3 At a time when the need to make savings is paramount, there is a compelling case to invest more in epilepsy research. The return on investment could lead to substantial cost savings for the NHS and will make a life changing difference to those affected.
Helping to deliver new epilepsy medicines
While this lack of funding has delayed progress, the investment that has been made epilepsy research has delivered important breakthroughs. Researchers have made enormous gains in the scientific understanding of how and why epilepsy occurs, thanks largely to technologies that allow for a deeper view of the brain’s activity, such as the electroencephalogram (EEG) and magnetic resonance imaging (MRI).
Research into epilepsy has a strong track record of delivering new medicines. There has never been a better time to harness the recent, unprecedented advances in science, medicine and technology for the benefit of people living with this life changing condition. If we don’t, epilepsy will continue to interrupt the lives of those affected.
• Epilepsy is a neurological condition characterised by seizures which are caused by excessive electrical activity within networks of neurones in the brain.
• Its impact can vary considerably from person to person depending on which part of the brain is affected.
• 30% of people live with uncontrolled seizures that do not respond to medication.4
• In 65% of people there is no known cause.
Dr Anne Coxon’s daughter Katherine, 32, has a severe form of epilepsy which is resistant to existing treatment.
Anne says: “At Katherine’s 18th birthday party I was told by a nurse from her specialist boarding school that she never thought she’d see her reach 18. To be honest neither did I.
“The fact that Katherine is now 32 is undoubtedly due to research into the causes and treatment of epilepsy. As parents, we’ve never accepted that Katherine’s epilepsy could not be improved. We were lucky to have a paediatric consultant who involved Katherine in early research, whether novel medication, the ketogenic diet, neuropsychological assessments, psychiatric referrals or sleep studies.
It’s unacceptable that up to 30% of people with epilepsy continue to have their lives dominated by seizures.
Continuous support from health professionals
“We have regular conversations with health professionals about treatments for seizures, behaviour and mood. Sometimes it’s difficult to weigh up whether to trial a new drug or decrease an existing medication in case an improvement in seizure control is offset by a deterioration in behaviour or cognition.
“It’s unacceptable that up to 30% of people with epilepsy continue to have their lives dominated by seizures. Research into epilepsy, gives us hope that our daughter Katherine may one day have a life without seizures.”
1 Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of the burden of active and life-time epilepsy: a meta-analytic approach. Epilepsia. 2010;51:883–90.
2 NICE Guidelines (//nice.org.uk/guidance/cg137)
3 UK Health Research Analysis, 2018 ( //hrcsonline.net/reports/analysis-reports/uk-health-research-analysis-2018/)
4 Joint Epilepsy Council, 2011 //epilepsyscotland.org.uk/wp-content/uploads/2019/05/Joint_Epilepsy_Council_Prevalence_and_Incidence_September_11_3.pdf
