TIPPING POINT – EPILEPSY RESEARCH

Chronic underinvestment in epilepsy research has meant effective treatments for everyone living with the condition are still decades away. But together we can change this. Right now, there are policy shifts relating to long-term health conditions, brain health and multi-morbidities that we must leverage. We are at a tipping point.

This programme will be collaborative from the start, with everyone generating ideas and shaping the research environment we need to advance research to end epilepsy. If you would like to be involved, please get in touch.
Angie Pullen, Programme Lead

CONTACT ANGIE

Why now?

  • In March, NICE published revised guidelines detailing recommendations where more research is needed.
  • Epilepsy Research UK has recently funded and led a James Lind Alliance UK Priority Setting Partnership. The Top 10 research priorities of the UK Epilepsy Priority Setting Partnership will be published in October 2022.
  • The World Health Organization’s Intersectoral Global Action Plan on epilepsy, the WHO IGAP, requires governments worldwide to respond to the recommendations, potentially bringing about real change in policy and practice.

We will need to be prepared to stimulate and assist the government in its responsibility to respond to the key recommendations to foster research and innovation. We will develop a road map for delivery that will focus on prevention, closing the treatment gaps, reducing epilepsy deaths and improving lives.

What’s at stake?

Epilepsy is one of the most prevalent, serious neurological conditions, with around 1 in every 100 people in the UK living with the condition – that’s 65 million people worldwide with a known diagnosis..

Current drug therapies don’t work for everyone – 30% of people with epilepsy live with uncontrolled seizures.  And shockingly there are still 21 epilepsy-related deaths a week.

The NHS spends around two billion pounds every year on epilepsy services. But the cost to the health systems extends beyond seizures due to the rate of misdiagnosis and unplanned hospital admissions due to injury.

And it’s not just health care. The economic burden of epilepsy encompasses education, employability and social care.

Research funding – an unbalanced equation

Despite the number of people living with the condition, research into epilepsy receives only 7% of neurological research funding – just 0.3% of the £4.8 billion spent on health-related research.

Compared with the number of people affected by epilepsy, the funding for research into epilepsy is an unbalanced equation.

Inequalities in research funding for epilepsy have meant progress has been slow and the number of people living with epilepsy is not reducing fast enough.

Our community demands more

Thousands of people affected by epilepsy, and researchers working in epilepsy, are demanding more for the next generation.

Together, the community is shaping research priorities, raising awareness of the impact of epilepsy and calling for radical advances in treatment within a decade.

We need to bring everyone together to end epilepsy.

Our plan

In the coming months, we will be meeting with clinicians, researchers, funders, and epilepsy patient groups throughout the UK. We will identify the shortfalls and challenges that must be urgently addressed to increase capacity of the research environment and fast-track research into epilepsy.

By developing a national epilepsy research collaborative, we will design and deliver a programme that will drive research breakthroughs, resulting in greatly improved diagnostics, treatments and prevention.

We will then co-produce and publish a fully scoped and costed roadmap to radically advance research into epilepsy.  We will demonstrate to the government the potentially ground-breaking impact of this programme and seek a one-off accelerator investment of £60million pounds – that’s £100 for every1 in 100 people living with epilepsy in the UK.

Next steps

Following stakeholder engagement, we will workshop the challenges identified and publish a collaborative road map for delivery.

Equipped by the underpinning policy changes and our action plan, we will work in partnership with people affected by epilepsy to seek from the government our equitable share of research funding.

Now is the time for everyone to come together to end epilepsy. 

Leading the programme

Our Programme Directors are three of the UK’s leading clinicians and researchers. Our Campaign Leaders are people directly affected by epilepsy.  Together we will launch a strategic communications campaign to raise awareness of the impact of epilepsy and how research funding will bring about a radical change within a generation.

We cannot underestimate the power of collaboration. Our community must work together for every 1 in 100 living with epilepsy.

#Every1EndingEpilepsy

The time is now.

To get involved, please contact Programme Lead Angie Pullen.

CONTACT ANGIE