There are 21 epilepsy-related deaths every week in the UK – here, Maxine Smeaton, Chief Executive of Epilepsy Research UK discusses what the future holds for essential epilepsy treatment research
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, and in 65% of people, there is no known cause. The numbers associated with epilepsy are staggering. As one of the most common serious neurological conditions, it affects around 65 million people worldwide. Here in the UK, there are 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, and this costs the NHS an estimated £1.5 billion annually. Despite the high prevalence of this devastating condition, the only number associated with epilepsy that is not large is the amount of research funding it receives. Research funding into epilepsy lags behind other, less prevalent conditions. This alarming research funding gap has hampered progress, meaning onethird of people continue to live with uncontrolled seizures that do not respond to treatment. This is over 180,000 people for whom research into treatments has not yet delivered.
For those living with the constant threat of seizures, virtually every life choice – from education to careers or starting a family – is affected. Perhaps unsurprisingly, people with epilepsy are also at increased risk of depression, social isolation and unemployment.
Epilepsy Research 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. Towards the end of 2020, we published the #ALifeInterrupted report, highlighting the disruptive, interruptive impact of epilepsy. The associated campaign aimed to draw attention to the stark lack of funding for epilepsy research and called for more investment to accelerate the pace of new discoveries.
How can research into epilepsy change lives?
Kaytie’s daughter Grace, 13, has lived with the various impacts of epilepsy for most of her life, but she says research into the surgical treatment of epilepsy has given Grace her life back: “Grace was four when she had her first tonic-clonic seizure while playing in her room with a friend. She was put on antiepileptic medication which changed her behaviour, making her a live wire and unable to settle down at night. We tried many different drug combinations and treatments, but each time Grace’s body seemed to respond for around 8 weeks and then she would hit rock bottom, having seizures every couple of minutes or end up in status epilepticus. I was working full time, but we were spending most of our lives in hospital.
“Day and night, epilepsy was constantly interrupting Grace’s life. At one point she couldn’t walk and would lay there on the sofa, having seizure after seizure. She couldn’t talk, she didn’t have the energy to cry, she just had really sad eyes.
“Since surgery, Grace has got her life back. She attends an amazing specialist school, she has a nice group of friends and plenty of hobbies. Most importantly – she is happy. We support research into epilepsy because without it, Grace wouldn’t be here today.”
Despite the life-changing impact of research for people like Grace, epilepsy research 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. 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 will make a life-changing difference to those affected and could lead to substantial cost savings for the NHS.
While this lack of funding has delayed progress, the investment that has been made in epilepsy research has delivered important breakthroughs. Researchers have made enormous gains in the scientific understanding of epilepsy, 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 also has a strong track record of delivering new medicines.
Dr Anne Coxon, Epilepsy Research UK Trustee, summed up the urgency of the situation and imperative for more research: “It is not enough to be kind and compassionate to people with epilepsy – society should find it unacceptable that up to 30% of people with epilepsy continue to have their lives dominated by seizures. Research gives us hope that our daughter Katherine may one day have a life without seizures, and until then, we take comfort that there are people dedicated to making a better life for people with epilepsy.”
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 disruptive condition. If we do not, epilepsy will continue to interrupt thousands of lives in the UK each day.