Epilepsy is more than just a medical condition, it can impact on every aspect of life
Dr Amit Bali, Clinical Leadership Fellow at Young Epilepsy, writes about what can be done to improve things at school for young people with epilepsy.
“How are things at school?” — it’s the question I always ask when I see a child or young person in a paediatric clinic, or at least I like to think I always do. Hopefully this is true for most clinicians working with young people, but it is probably the case that the question comes somewhat down the list, after finding out about current symptoms and other medical issues. For those of us that see young people with epilepsy, that means we ask about the number of seizures they have had recently, whether that is better or worse than normal, have they been taking their medication, looking out for potential side effects, and so on.
Questions about school are undoubtedly crucial though. For one thing, young people spend 40–50% of their awake time each week at school, and so information about how things are at school should clearly be a priority. For young people with epilepsy, this simple line of conversation might uncover that they have been missing school a lot, and so providing the opportunity to find out why. Or they may have experienced bullying as a direct result of their condition. Or they may be missing out on school trips because of concerns about their epilepsy. Sadly, all of these are not just hypothetical examples, but ones that have often become apparent in my clinics as a result of this conversation.
In addition to this, however, is growing evidence that epilepsy has a broad and significant impact on the day-to-day life of young people with the condition. The CHESS report from Young Epilepsy worked with school-aged children with epilepsy, and found that 95% experienced problems with memory and cognition, emotional and behavioural issues, and mental health and wellbeing problems. That is a profound statistic, but more worrying is that these needs are often unmet, as people concentrate on the medical needs and stop there.
So what can be done to improve things at school for young people with epilepsy? Firstly, increased awareness and knowledge in schools is paramount. Knowing key information about what epilepsy, how it is treated (especially those that might be given at school) and what to do in an emergency are absolutely key, as well as being aware of the wider things to look out for (as listed above).
Secondly, a recognition that, while there are many problems that are common for all young people with the condition, epilepsy affects young people in a very unique way. Encouragement to get to know each young person and how their epilepsy impacts on them is key.
Thirdly, that by doing this, true inclusivity can be achieved. It should not be the case that young people miss out on school trips and other activities; with appropriate planning, any necessary arrangements can be made.
Fourthly, that schools are not alone in doing this. If we are to offer great care for young people with epilepsy, that means working together with other professionals and, most importantly, with a young person and their family.
For the first time, this new guide sets out all of the above in one place, signposting to other useful resources.
Download our London epilepsy guide for schools
About the author
Dr Amit Bali is Chair of the Healthy London Partnership’s CYP Epilepsy group. In his roles as Clinical Leadership Fellow (Young Epilepsy) and an Honorary Research Associate (UCL Great Ormond Street Institute of Child Health), he leads work looking to establish holistic, integrated care for CYP with epilepsy. He works as a paediatric registrar in London, having studied medicine at UCL. He can be followed on Twitter: @amitkbali