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The Disruptive Nature of Epilepsy

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This webpage is intended for UK-I health care professionals.

Here in the UK, there are currently 600,000 people with a known diagnosis of epilepsy. In England, about 100,000 emergency admissions are due to epilepsy each year. The total cost of epilepsy to the NHS is an estimated £1.5 billion annually (UK).2,3

Lack of investment into epilepsy research

Despite the high prevalence of this 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.5

This alarming research funding gap has delayed progress, meaning a third of people continue to live with uncontrolled seizures. This equates to over 180,000 people for whom research has not yet delivered.5

Impact of seizures on daily life

For those living with the constant threat of seizures, virtually every life choice can be affected, from education and careers to starting a family. Perhaps unsurprisingly, people with epilepsy are also at increased risk of depression, social isolation and unemployment.5

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 drew attention to the stark lack of funding into epilepsy and called for more investment to accelerate the pace of new discoveries.5

Research into epilepsy received just £18.2 million – less than 0.4% of the total £4.8 billion spent on health-related research in the UK in 2017/2018.5,6 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 could make a life-changing difference to those affected.5

Dr Anne Coxon’s daughter Katherine, 32, has a severe form of epilepsy that 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.”

Dr Anne Coxon, Epilepsy Research UK: ”A parent’s perspective”4

Helping to deliver new epilepsy medicines

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 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.

Written by Maxine Smeaton

Chief Executive, Epilepsy Research UK

#ALIFEINTERRUPTED

  • Epilepsy is a neurological condition characterised by seizures tahtare caused by excessive electrical activity in the brain2
  • The effects and impact of the excessive electrical activity vary depending on which part of the brain is affected2
  • 30% of people with epilepsy live with uncontrolled seizures that do not respond to medication2
  • In 65% of epilepsy cases there is no known cause2

  1. Moshé SL, Perucca E, Ryvlin P, Tomson T, Perruca E, et al. Lancet. 2015;385(9971):884 - 898.
  2. Epilepsy Statistics. https://epilepsyresearch.org.uk/about-epilepsy/epilepsy-statistics/. Last accessed November 2021.
  3. Dixon PA, Kirkham JJ, Marson AG, Pearson MG. BMJ Open. 2015;5:e007325.
  4. What research means to me: a parent’s perspective. https://epilepsyresearch.org.uk/our-research/research-blog/lgs-a-parents-perspective/. Last accessed November 2021.
  5. Epilepsy Research UK. A life interrupted. Launch report. https://epilepsyresearch.org.uk/alifeinterrupted/. Last accessed November 2021.
  6. UK Health Research Analysis, 2018. https://hrcsonline.net/reports/analysis-reports/uk-health-research-analysis-2018/. Last accessed November 2021.

 

UK14624P | November 2022

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