For people living with epilepsy, the condition has a lifelong impact, not just on patients but on their families and support networks. For epilepsy clinicians, diagnosing, treating, and managing a person’s epilepsy and associated conditions is not always straightforward. This is not just the case for my colleagues and I in the UK, but for epilepsy healthcare professionals and people affected by the condition around the world, and particularly so in less developed countries.
Epilepsy has been critically and chronically neglected, and there is an urgent need for global action. This is why I am so pleased that the WHO IGAP has been approved, to not only address challenges in providing epilepsy care around the world but most importantly to challenge governments to prioritise the care of people living with this condition. As part of the strategic initiatives outlined in the report, there are a number of recommendations for research initiatives to foster research and innovation and strengthen information systems. This will undoubtedly raise the profile of epilepsy, and of the vital role of research.
The IGAP will cover a 10-year period from 2022-31 and will build on existing global resolutions, commitments and reports which have previously highlighted challenges presented by epilepsy. This is the first time that epilepsy and other neurological disorders have been recognised as a distinct field by the WHO, representing a unique opportunity for changes to policy and practice that will undoubtedly inform future research into epilepsy and brain health.
The IGAP aims to reduce the stigma, impact and burden of epilepsy and other neurological disorders, including associated mortality, morbidity and disability. It also seeks to improve the quality of life for people of all ages with neurological disorders as well as promoting brain health and development.
Now that the IGAP has been agreed, governments around the world will be tasked with responding to the recommendations, potentially bringing about real change in policy and practice whilst raising awareness of epilepsy internationally. Importantly, there will also be implications for future research as the IGAP will highlight the ongoing need for research into epilepsy and other neurological conditions.
The IGAP outlined priorities which will help influence and shape research into epilepsy. Some of the key research recommendations presented are summarised below. In my view, an important aspect of these recommendations is that they focus not on specific aspects of epilepsy, but on significant systematic changes – increased research investment, national and international collaborations, and strengthened research infrastructure, to name a few. Imperative to this, the WHO have recognised the involvement of people living with and affected by the condition.
This is something Epilepsy Research UK is already pioneering, through the Shape Epilepsy Research Network and UK Epilepsy Priority Setting Partnership and through the development of a national epilepsy research collaborative and patient led campaign announced this week.
The #Every1EndingEpilepsy programme will seek a one-off accelerator investment of £60million from institutional funders for everyone living with epilepsy in the UK – that’s £100 for every 1 in 100 and £60 million in total. The patient and researcher-led campaign will raise awareness of the impact of epilepsy and demonstrate how by working collaboratively we will bring about a radical change within a generation. You can watch the campaign launch video below.
The WHO IGAP for Epilepsy and Other Neurological Conditions is a long-overdue step in putting epilepsy firmly on the agendas of governments around the world. But this is merely the beginning. Together, with the recent publication of the updated NICE Guidelines for Epilepsy, and the upcoming publication of the UK Epilepsy PSP, we are at a tipping point. The evidence is mounting – there has never been a more compelling argument for much needed investment in research into epilepsy. The time is now for everyone to come together to end epilepsy. #Every1EndingEpilepsy
-Professor J Helen Cross OBE
– an integral part of the national response to address the burden of neurological disorders is to increase investment and improve research governance
– support national, regional and international research collaborations in order to generate new knowledge and translate existing evidence into action, as well as encourage the sharing of and open access to research data
–build the knowledge and capacity of decision-makers on the need for innovation and highlight the importance of prioritizing funding for neurological conditions, such as epilepsy
–improve research infrastructure to strengthen national research and innovation
–involve and support people affected by neurological conditions, including their carers and families, in actively participating in the research process from planning to implementation