Maxine Smeaton, Chief Executive of Epilepsy Research UK, reveals how people with epilepsy are shaping the future of research
Let’s talk about epilepsy. Though it’s rarely a headline topic, epilepsy interrupts the lives of around one in 100 people living in the UK. It’s invisible, it’s unpredictable and it’s frightening. Epilepsy is the most common serious brain disorder worldwide and can affect anyone of any age, gender, race or social class. Around a third of people with epilepsy live with seizures that do not respond to medication, and some require around the clock support or residential care.
Seizures cause interruptions that can impact virtually every life choice – education, careers, and even the decision to ‘risk’ pregnancy to start a family. The cost of epilepsy to the NHS is estimated to be at least £1.5 billion annually, and there are a staggering 1,000 emergency admissions due to epilepsy each week in England.
Shockingly, there are 21 epilepsy-related deaths every week in the UK. Last year, Epilepsy Research UK published the #Alifelnterrupted – Shaping the Future of Research into Epilepsy report, which highlighted alarming inequalities in research funding for epilepsy. The stark figures in this report demonstrate that funding for epilepsy research is disproportionately less than other neurological conditions – under 7% of neurological funding. Epilepsy research received just 0.3% of the £4.8 billion overall health-related research spend, lagging behind other conditions affecting far smaller patient populations.
As the report recommends, one way to tackle the funding disparities is by getting more people with epilepsy directly involved in helping to shape the future of research. Only through more investment and patient involvement will we be able to stop epilepsy interrupting the lives of those affected.
The National Institute for Health Research defines Patient and Public Involvement (PPI) in research as research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. By giving patients and carers with lived experience of a condition an active role, we can ensure their voices are heard and that the research that matters most to them is prioritised.
Until now, PPI programmes involving people with epilepsy have been disappointingly limited. That’s why Epilepsy Research UK launched the SHAPE NETWORK– as part of the #ALifeInterrupted campaign – to build the biggest ever community of people affected by epilepsy to influence and shape future research.
In creating the SHAPE NETWORK, Epilepsy Research UK aims to provide people with epilepsy the opportunity for meaningful involvement in the assessment, design and prioritisation of research. The data gathered from the network will underpin plans for developing future innovations in treatment and care through syndicates and task forces. In addition, the charity will engage with epilepsy researchers to provide a conduit PPI service to ensure research programmes in development are done so with the managed and meaningful involvement of people with epilepsy.
SHAPE NETWORK member Rebecca said of her involvement, “As someone living with epilepsy, it turns a negative into a positive – taking my years of lived experience into concrete forward motion. You’re an expert in your own epilepsy and your voice should be included in research direction and decisions.”
Epilepsy: Invest more
The unified voice of people affected by epilepsy and academic and clinical researchers will be an essential tool in influencing government, institutional funders and strategic funders to invest more in this chronically underfunded area of research and will support our own plans for sustainability. The guidance from experts by experience when designing, implementing and evaluating research will make studies more effective, more relevant and more cost-effective.
Never before has the public been more aware of the vital role science plays in advancing public health. We have an opportunity to galvanise the epilepsy community into action by harnessing the impact COVID-19 has had on the willingness to use virtual technologies to participate in meetings and events. By capturing the voices of such a broad range of people, both geographically and in terms of the severity of the condition, we will be able to drive the scientific advances so urgently needed for people affected by epilepsy.
If your life has been interrupted by epilepsy, you can shape the future of research. Please visit:http://www.epilepsyresearch.org.uk/ShapeNetwork%20%20