Why Epilepsy Is Still Being Ignored - Jay Price, Intellectual Disability Nurse, Dorset HealthCare University NHS Foundation Trust, UK
Why does epilepsy still receive so little funding, attention and serious public understanding compared with other diseases? Intellectual disability nurse Jay Price talks about why epilepsy remains underfunded and badly marketed, and why patients, families and even clinicians often miss much of what the epilepsies actually involve. The conversation also explores misdiagnosis, quality of life, and why co-produced training and education could improve epilepsy care.
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Episode Highlights
Why epilepsy remains underfunded and badly marketed
Public, patient, family and clinician ignorance regarding epilepsy
Misdiagnosis and misunderstanding in epilepsy care
Why co-produced training matters in epilepsy
About Jay Price
Jay Price is an Intellectual Disability Nurse (Dorset Healthcare University Foundation Trust) and researcher (University of Kent) with a strong passion for improving epilepsy understanding, education, and care, and dedicated to reducing inequalities amongst those affected (especially those with intellectual disability (ID)).
Full profile: Jay-Price
Topics mentioned
epilepsy funding
epilepsy education and advocacy
policy and commissioning
seizure stereotypes
focal seizures
intellectual disability and misdiagnosis
co-produced training
quality of life
Related paper
“Epilepsy, it's just not sexy, is it?’: A qualitative exploration into health and social care professionals' perspectives of people with intellectual disabilities and epilepsy, in social care”, Epilepsy & Behavior, https://www.epilepsybehavior.com/article/S1525-5050(25)00437-8/fulltext, Jay Price et al, 25 Sep 2025, DOI: 10.1016/j.yebeh.2025.110697
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Trailer & intro
00:00 Jay Price
“We need to make it sexy. Epilepsy is a really horrific condition, really horrific condition, and there is a lot of doom and gloom associated with it.
00:08 Torie Robinson
Understandably.
00:09 Jay Price
Understandably. But we need that understanding, we need you to understand us."
00:14 Torie Robinson
Today I’m joined by Intellectual Disabilities Nurse and Epilepsy Champion Jay Price, who is going to be sharing with us why epilepsy is still being overlooked across funding, policy and care. We’re going to talk about why epilepsy still receives disproportionately low attention and funding, how public and professional understanding is often narrowed to tonic-clonic seizures, and why improved education and co-produced training could improve quality of life across the epilepsies.
If you’re new here, please subscribe so you don’t miss future conversations - and let’s get into today’s episode - presented in partnership with EASEE®, by Precisis GmbH.
Unequal distribution of funding and care
00:51 Torie Robinson
So your paper is titled “Epilepsy. It's just not sexy, is it?”! So, what does this mean when you look at funding and attention?
00:58 Jay Price
My paper really focuses on the lack of understanding and awareness out there and the lack of perception that we have within epilepsy. So when we're talking about resources and funding from government or even charity or even health research, it is very much pushed to the bottom of the pile. You know, cool things such as diabetes or cancer or heart disease is prioritised because of the health priorities within England, whereas neurological - especially epilepsy - is just not focused on as much. And we see that in disproportionate of services throughout the United Kingdom and Ireland that actually you could go over borders and things such as from Cornwall to Devon and the services aren't the same. So yeah, it's quite different. So, when we're talking about the funding side of things, the Epilepsy Research Institute actually came across with the funding of, in research, epilepsy received 0.3% of the 4.8 billion that health research went into, which is actually phenomenal, if we're talking about it. So, like, what, when we break that down a little bit further, just for different diagnoses, 82.5 million of that went into dementia, 34 million went into Parkinson's, but 12.8 went into epilepsy. And then when we break that down further into how much was invested per person with those diagnoses, 234 pound per person for Parkinson's, 97 pound per person for dementia, and only 21 per person with epilepsy. So actually, when we look at it, the funding's just not there. It's just not recognised. It's not sexy!
Why policy makers don’t prioritise epilepsy
03:01 Torie Robinson
What does this tell us about epilepsy is prioritised or is not prioritised within healthcare and research and policy as well?
03:08 Jay Price
I think it's really hard for policymakers, commissioners and things like that to prioritise epilepsy when the epilepsy community and the epilepsy needs are so diverse. So, you can't put it into just one pocket of let's reduce SUDEP or let's put more funding into the different types of epilepsy, or genetic screening, and things like that. We can't put it into one aspect without impacting the rest. So, if we prioritise one part of epilepsy over another then we're creating that kind of a hierarchical position within the condition as well.
03:49 Torie Robinson
There does actually seem to be quite a bit of competition, I would say, even between different sorts of epilepsies and different symptoms of the epilepsies as well. Would you agree?
Symptoms: the role of media
03:57 Jay Price
Yes, I mean this is something that I've recently been aware of but I think that, I think media plays into a role of this as well, you know… that if a person has tonic-clonic seizures, for instance, it's more “sexy” in a way because you can visualise it, they are risky in terms of medical emergencies. However, people who experience focal seizures know, don't get the same recognition. Media doesn't recognise that. It's not seen or recognised as much and people don't understand that aspect of it. The epilepsy isn't just tonic-clonic seizures…
04:39 Torie Robinson
Mm-hmm.
04:39 Jay Price
…you know, falling down, frothing at your mouth, wetting yourself or soiling yourself ,and convulsing, there are multiple aspects of seizures. And not only that though, that seizures are just a tiny perspective of the iceberg really! Really tiny perspective!
04:58 Torie Robinson
Yeah!
04:59 Jay Price
…where there is so much more that the condition impacts the person.
05:04 Torie Robinson
Yeah, exactly. And I think those other symptoms are rarely seen by the general public, but even amongst many people with an epilepsy and by carers, in fact…
05:12 Jay Price
Yeah.
05:12 Torie Robinson
…are often not focused on. And we can't expect the rest of the world to change if we, people with an epilepsy, and carers and sometimes, unfortunately, often, clinicians to don't see past seizure activity and see past generalised seizures, which, you know, that's even it's crazy in itself because only half of patients with an epilepsy experience, generalised seizures. So why are we chopping out half the population?
05:40 Jay Price
Absolutely, absolutely. What about those people that don't present in a “perfect” way for epilepsy? You know, the people that are still going through diagnosis and especially in the intellectual disability population, you know, we have such an abstract view of seizures because, you know, we have people with cerebral palsy, we have autistic people, we have people with intellectual disabilities, and people that encompass all of those conditions, and they have very stereotypy behaviours; they have repetitive behaviours. And the misdiagnosis is approximately, I believe a third, that they're misdiagnosed to have epilepsy or misdiagnosed not to have epilepsy.
Stripping during seizures
06:23 Jay Price
And actually, we're not focusing on that element either, like, there are people out there that have strange and obscure seizures that just don't present in the normal fashion. I used to work with a lady who used to strip during a seizure…
06:37 Torie Robinson
Oh!
06:38 Jay Price
…but she would strip to induce a seizure and then strip during a seizure. And it was kind of like, are you inducing or are you actually in a seizure right now? Like, I don't know.
06:48 Torie Robinson
I have stripped. Well, only one time I know that I started stripping in a seizure, years ago. And I only know because when I came to, and oh my God, the headache. But I had to ask my colleagues “Why have you put a tea towel over my groin area?”, she said “Mate, because you were stripping.”. And I learned you have to wear nice underwear if you have epilepsy.
07:06 Jay Price
Hahahahahaha!!
07:08 Torie Robinson
I didn't that day and that was the worst thing.
07:10 Jay Price
Promote that!
07:12 Torie Robinson
Yeah, yeah, make sure you have nice undies on.
Seizures are the tip of the iceberg
07:14 Torie Robinson
But anyway, but in all seriousness, these are things that people experience and we can go back to your whole thing about an iceberg, inferring that you have an iceberg, you see the top of the thing, but mate, if you come out to it like the Titanic, you're going to soon realise what the awfulness underneath the surface level shows and we need people to realise that.
Co-produced training: listening and addressing what matters for People with an Epilepsy
07:34 Torie Robinson
Tell us about your co-produced training. What needs to change in how we train health and social care professionals to better support groups? And I would add to that as well, how we need to better train people with an epilepsy and their carers.
07:49 Jay Price
I think there could be a lot of improvement within this sector. I think that the most important thing we need to start doing as clinicians, as people in general, we need to start listening and not just listening of “Yeah, yeah, yeah, I understand that.”. No, genuinely listening, and listening to not to resolve, but to listen and hear what that person is saying. You know, a person comes into clinic and you're talking to them about their seizures, that's great, but actually, what may have just happened is they couldn't go out with their friends because they had a horrific seizure and they felt exhausted afterwards, they're not sleeping because they're paranoid about having seizures during the night, you know, they can't drive so they've lost their job. Why are we not looking at all of those elements and just focusing on the seizures? So, I think that we need to start hearing people and hearing people's… what people want everybody else to know about epilepsy, not just seizures and medication and treatment.
09:00 Torie Robinson
And also, I think you can add to that as well, like for instance, you spoke about going out, people are worried about going out because they might seize, but often people are worried about going out or feel they can't go out because they're so depressed or because they're so anxious, which is often a symptom of the epileptogenesis as well.
Health and social care practitioners focusing on seizures alone
09:16 Jay Price
Yeah! But we don't talk about that. We don't talk about that because… and I think this is where the disparity comes in. We are all taught as health and social care practitioners to be holistic and person-centered, but actually we have so limited time to do that that we are focusing on what we need to focus on right now. So, I'm a learning disability nurse, I focus on the whole person, however, if I'm going out to do a behavioural referral, not everybody will talk about the wider aspect of the behaviour. Like, do they have epilepsy? Is the epilepsy very interlinked with the behaviour? What about constipation? What about, you know, daily activities? And we're not talking about that. And from an epilepsy point of view, you go into a clinician, they're talking to you about your seizures, they don't want to know from the anxiety point of view, because that's not their role. But why isn't it their role? You are an epilepsy practitioner and epilepsy is much more than a seizure.
10:20 Torie Robinson
It is their responsibility to look at these other things. But just so I suppose we don't have anybody listening who has an epilepsy to freak out immediately at any clinician; clinicians often don't have the time, literally, to go into anything else. And this is wrong…
10:36 Jay Price
Yeah.
10:36 Torie Robinson
…but it's not their fault…
10:38 Jay Price
No.
We all need to work together
10:38 Torie Robinson
…and so, we need to be working together. I would say people affected by the epilepsies - and all different types as well, not just the individual specific diagnosis - with clinicians and with researchers. Rather than…
10:53 Jay Price
Yeah.
10:54 Torie Robinson
…as separate entities trying to…
10:55 Jay Price
Yeah.
10:56 Torie Robinson
…where it appears that we're fighting for different things when in fact we are all here to try and improve quality of life.
11:01 Jay Price
Absolutely. And, you know, practitioners, health and social care practitioners, you know, they are professionals in their own right, but they are people at the end of the day! They don't “not care”, they don’t deliberately not give you their time they're just not given the resource to do that.
Benefits of co-produced research and training
11:20 Jay Price
And if we involve people and co-produce research and co-produce training programs to better the lives of so many people, it's not just going to impact people with intellectual disabilities from my research, it's going to impact children, it's going to impact adolescents, it's going to impact young people and adults and the older generation. It's going to impact everybody. Because we're involving the main stakeholders. We're not just health and social care professionals or funding authorities doing this research because we're trying to tick a box, we actually want to hear and improve things for you. It's not for us; it's for you at the end of the day.
12:04 Torie Robinson
Before we move on - with thanks to EASEE®, by Precisis GmbH.
Branding epilepsy like stroke, mental health, dementia, and Parkinson’s
12:09 Torie Robinson
How do we achieve that?
12:10 Jay Price
We need to make it sexy. Epilepsy is a really horrific condition, really horrific condition, and there is a lot of doom and gloom associated with it.
12:18 Torie Robinson
Understandably.
12:20 Jay Price
Understandably. But we need that understanding. We need you to understand us. For people that this condition is often debilitating, we need to look at presenting it in a way of; we know it's difficult, we know it can be difficult, but in order for us to get better, get better, we need that understanding. Like, we can lead really meaningful lives too - in a sense of, you know, you can get married, you can start a family, you know, epilepsy doesn't have to define you.
12:54 Torie Robinson
And we need to communicate that to other people, I think, and perhaps be less almost segregated into our little, little sections and maybe come together as one as other diseases have done very well, like cancer, like Huntington's, like multiple sclerosis, like Parkinson's. I mean: admiration marketing wise, darlings, I just think, you know…
13:17 Jay Price
Hahaha!
13:18 Torie Robinson
Hahaha!
13:19 Jay Price
Let's take some inspiration from them, like, you know, they are doing fantastically well to promote their conditions and to, you know, the people running for like London Marathons and things for Stroke Association or Parkinson's Association or even Mind, like the mental health charity. I think there is so much value in that promotion, but it starts from the bottom, like we need to employ and encourage the people that are experiencing this on a day-to-day basis to get their voices heard.
13:52 Torie Robinson
And to do that, they need to be educated regarding the disease, not just how it affects them, but how it affects everybody else, and have the confidence to speak openly and in an educational manner…
14:03 Jay Price.
Yeah.
14:03 Torie Robinson
…about it. As many people affected do already, potentially not enough, and not as many compared to these other previously mentioned diseases.
Rude-word rabbit holes of nonsense
14:11 Jay Price
Like the stereotype of epilepsy is, like I said before, you know, falling down and having a tonic-clonic seizure and frothing at the mouth, and wetting yourself and things like that. Whereas actually there is much more to a seizure. And actually, if you were to be diagnosed with epilepsy, you don't have that knowledge in a 10, 15-minute appointment. So, then you go searching for that knowledge and sometimes you fall upon incorrect resources or…
14:39 Torie Robinson
You're so polite.
14:40 Jay Price
Hahahaha!
14:40 Torie Robinson
Let's face it, there is a lot of rude wordness out there, but it's so easy to fall into that hole and that echo chamber. But I guess that's why some of the charities can be amazing with that, to actually give you… Or, Epilepsy Sparks one might think(!)...
14:55 Jay Price
Yeah!
14:55 Torie Robinson
…but to give you credible information based upon empirical evidence, not something that's just all like “woo woo”, some random thing from social media that might not be true.
Scaremongering vs lingerie marketing of epilepsy
15:04 Jay Price
Absolutely. And I think like that that goes into the cycle of the fear the fear and the scaremongering; that there is such delivery of like scaremongering within the epilepsy population, that, you know, you type in a seizure and it's like “You could die!”. Okay but we could die from anything tomorrow, like there's a meningitis scandal currently going around like we could die of meningitis. But there are... you can absolutely die from epilepsy. I'm not negating that. But that's not what we should be presenting to people. Like, that is not the most paramount thing.
15:43 Torie Robinson
It's quality of life and so education of all parties and let's work together and make epilepsy as “sexy” as the other diseases. Marketing, this is marketing speak.
15:56 Jay Price
Hahahahahahaha!
15:56 Torie Robinson
Haha! We're not saying "Ooo darling, ding dong, epilepsy!". We're not saying that, haha.
16:02 Jay Price
Absolutely not. If we were to dress it up in like, lingerie, or anything like that, I think the best thing that I would say to people is we need to talk to one another. We need to hear each other's voices and we need to hear those experiences. And how can we promote these training programs and deliver training programs if we're just talking about it from a clinician point of view? That's why co-produced research and co-produced delivery is so vital here. You shouldn't do research just to tick a box. You should do research in these areas to raise questions. Like, maybe you have found or identified a question that nobody has ever thought of within that population. You know, have we ever thought of teaching commissioners about epilepsy awareness training? How can they make decisions about epilepsy funding if they don't have the knowledge and understanding about epilepsy in the first place? You know, have we thought about that? Have we thought about how it's regulated within services and things like that? But not only that, the voices within that research, especially qualitative research, you know, those voices are so paramount. I can analyse until the cows come home basically of all of that, but you are talking to an individual that has so much insight or so much knowledge that you can't even touch upon or learn in like a day-to-day basis. You learn from each other.
Closing thoughts & thanks
17:38 Torie Robinson
Thank you so much to Jay for sharing her paper and highlighting how improved education - of all parties - improved awareness, improved training and joined-up advocacy are all essential if care and outcomes are going to improve.
Again, huge thanks to EASEE®, by Precisis GmbH, for partnering with us at Epilepsy Sparks.