Let’s talk about medication adherence
The following speech was originally delivered by Jack, on behalf of the Epilepsy12 Youth Advocates, as part of a presentation to clinicians attending the E12 Open UK Conference at RCPCH 28 September 2026.
Everyone here already knows what Epilepsy Medications can do to someone clinically, but that’s not what I’m here to talk about.
I’m here to talk more about what’s harder to see outside of a clinical setting. In a study with Oxford University, a young person described their medication by saying “I can’t remember anything no more, I used to have a good memory but now so forgetful. ” Not a seizure, not a statistic, just a part of who she was, quietly going missing.
Medication is not a straightforward fix
Personally, medication has never been the straightforward fix many people assume it to be. I currently take 4 different anti-epileptics, each with their own cost, my memory, my mood, my concentration, you have NO idea how long it took me to try and write this!
In front of you today, I want to talk about the parts of a young person’s day that often goes unnoticed.
Medication runs through a young person’s whole life, that’s true for anyone, epilepsy or not. For the young people you treat, it’s also what keeps their seizures under control. But every one of these medications can often come with side effects, memory, mood, energy, friendships even down to how they feel about themselves, and of course so much more.
Here’s the ask though, children and young people need to actually understand what they’re taking and what it means for their life. Especially those with additional needs, a rushed explanation from a parent isn’t enough. You are most likely the person who can explain it properly, in whatever way lands with the young person.
A prescription tells them what to take, however it doesn’t tell them what it will cost them, and I don’t mean price. That conversation is yours to have, however it doesn’t seem to happen as often as we’d like.
At the moment, medication conversations cover one thing, how is the EPILEPSY responding, has anything changed, any other symptoms? This is more of a status check than a conversation.
That’s not 100% on you. A 2023 UK survey of 88 healthcare professionals were asked about what stops that fuller conversation happening, and the answer was time, there just isn’t enough of it in a normal appointment.
The same survey also found young people most want to talk about their social life, their mental health and how their medication affects their thinking. Those HCPs said they felt only partially able to support exactly those topics, mental health most of all.
The thing is, these symptoms and conversations describe what isn’t seen in a clinic, a young persons entire life, how they make friends, how much they’re able to concentrate on their homework, how well they’re sleeping, and it goes on and on.
The system hands you such a small amount of time to do a task that needs a lot more. We want to help you close that gap to fit more into your appointments where possible.
I want to give you some stats that you might have heard before, but I want to echo them.
7 in 10.
More than 7 in 10 people with epilepsy struggled to get their prescribed medication in the last year. 40% of said it caused them stress or anxiety. Unfortunately, it’s not just a hiccup, it’s many of your patients and their families quietly managing the worry of running out, but not always saying so out loud.
30.9%.
A Scottish study of 320 children with epilepsy found only 30. 9% met the recommended adherence of medications over a year, and a quarter took less than HALF their dosage. Unfortunately, this isn’t old news. The NHS backed project re-ran the same question with children and families and found the same gap, young people’s own knowledge of their medication was limited, and families were left to fill in the unmet information needs themselves, often stumbling into false information along the way.
¼
A quarter of these children are taking less than half of their medication, often for reasons that have far more to do with daily life than the medication itself.
Not taking your medication
I have the unfortunate first hand knowledge of many of the concerns I’ve raised. I started to struggle with taking my medications in November and December last year. I stopped taking many of the medications I was prescribed. I did it almost in protest, because I didn’t want to believe that the medications I took has that much control over my life. I was studying and working in computing, and the complex mix of medications I’d been put on after leaving intensive care in October – where I’d been placed in an induced coma, had started causing tremors in my hands, which I’m sure you could imagine made my life incredibly difficult when I was trying to use a keyboard. So, I stopped taking them. And in December, my luck ran out. I was placed into an induced coma for the second time, having over 60 seizures in a short space of time, my medication was no longer there to protect me. I left university shortly after. Not because I wanted to – but because I had no other choice, the damage from both times in intensive care had taken it’s toll on my body. So, when I talk about the impact medication has on someone’s life, I’m not reading directly from a textbook.
Across 145 children’s epilepsy clinics, a survey of 2, 335 families found 90% of young people and 86% of carers were satisfied with their care overall, however the same study found that families who wanted more guidance about medication changes were significantly less satisfied than those who didn’t ask.
Not only that, in the most recent Epilepsy12 audit, found that only 5% of 5-15 year olds with epilepsy had an identified mental health condition. The word “identified” there raises some questions. As I’m sure you all know, Epilepsy carries a well-documented higher risk of exactly that. Mood and anxiety are two of the most common medication side effects.
Put it together, and you can all feel it. Talking openly about how medications can affect a young person’s life significantly reduces the stress felt by them and their families. Giving them the chance to ask more questions, and to have a say in decisions about their medication, doesn’t just ease the burden on them, it can also reduce the chance of them feeling lost, or feeling like their medication has to affect every aspect of their life: their friendships, their schoolwork or their overall quality of life.
Your Medications Checklist
The Epilepsy12 Youth Advocates have come together to try and implement a resource that can assist. A simple form, sent out alongside an appointment letter, which gives a young person and their family an easy opportunity to give the clinician a glance into something they may not feel too comfortable to share unless prompted.
It asks them how they feel with their medications on a simple scale, if there have been any differences in how they feel since their last appointment, with prompts to encourage those avenues of discussions if they feel like something is affecting them, and a non-judgmental approach to asking them about their medication compliance, designed to prompt a solution to the specific problem they’re facing, and a broader question that allows them to ask those questions to their clinician that they may not remember to ask during an appointment. This gives you the chance to get an insight into how that person is really feeling, not just with their epilepsy but also their medications. If you are using something like this already, we’d love to see it and share it with others too.
One thing that I’d love for people to leave with today is that a young person’s whole life could be dictated by the medication(s) they’re prescribed. Every decision about it is also a decision about their independence, their friendships and how in control of their own life they feel. The ask doesn’t have to be complicated, but just small things, like to think about how they are involved in their care, involve them, ask them questions and follow up if something changes. If they’re not taking their medications to stay curious as to the reasons why.
We’re all here for many different reasons, but I do believe we are united with a shared belief to improve care for young people and children in any way we can. You’ve given up your time to be here today, because this matters to you. There is nothing your patients, their families and we could appreciate more. Whilst it took me a while to think of how to end my little talk that I hope didn’t send anyone to sleep, I thought that if even one person left today, and asked a different question they may not have thought of before, it’ll have been worth every second.
To download our Your Medications Checklist click the button below, or visit Our Resources page directly.