What epilepsy looks like in real life often challenges what people assume.

If you work in care, this episode will change how you recognise epilepsy in real people — not just in guidance. We go beyond assumptions to explore lived experience, missed presentations, updates and new technology and what all this means for safe, informed care.

Epilepsy affects more than 600,000 people in the UK, yet it remains widely misunderstood. In this powerful episode of Momentum Matters, host TeeJay Dowe is joined by Tom Shillito (Epilepsy Action) and Jez Orbell (supporter of Epilepsy Society) who shares his personal experience of living with epilepsy for over 30 years.

Together, they explore what epilepsy really is, the different types of seizures, and how the condition impacts independence, mental wellbeing, work, relationships, and everyday life. Jez speaks candidly about diagnosis, medication side effects, loss of independence, and what it meant to finally regain his driving licence after 34 years.

This episode also looks at the wider picture: inequalities in epilepsy care across the UK, long waits to see specialists, stigma, and why person‑centred care is essential. The conversation highlights emerging technology, including seizure monitoring, wearables, AI, and advances in neurology that could transform epilepsy management in the future.

An honest, informative, and necessary conversation for anyone living with epilepsy, supporting someone who is, or wanting to better understand this complex condition.

🔍 In This Episode, We Cover:

• What epilepsy is
• The different types of seizures and common misconceptions
• Living with epilepsy: diagnosis, medication, and side effects
• Independence, driving restrictions, and their emotional impact
• Inequality in epilepsy care and access to specialists
• SUDEP awareness and seizure safety
• The role of technology, wearables, and AI in epilepsy care
• Breaking stigma and improving awareness

👥 Guests:

• Tom Shillito – Epilepsy Action
• Jez Orbell – Lived experience of epilepsy

📌 Resources & Support:

• Epilepsy Action – UK support, information, and advice: https://www.epilepsy.org.uk
• Epilepsy Society - UK support, information, and advice: https://www.epilespysociety.org.uk

So welcome to the Momentum Matters podcast. I’m super excited for this episode on epilepsy. Gosh, that was a mouthful, wasn’t it? This episode on epilepsy.

My guests today, I’ll get them to introduce themselves in a moment. This is the second podcast in our new series, and I think it’s going to be fun. You’ll hear some amazing stories and get some really, really valuable information.

So my guests today are Tom and Jez. I’m going to get you to give your own little personal introductions. Who you are, why you’re here, where you’re from, et cetera.

So let me start first of all with you, Tom. Go ahead and introduce yourself.

Hi, thank you so much for bringing me on the podcast. I’m really excited to be here.

So I’m Tom Shillitoe, and I’m the Health Improvement and Research Manager at Epilepsy Action. I’ve been with Epilepsy Action for about four years now, and my job is focused on listening to what people with epilepsy need, what their experiences are, what problems they’re facing, and also what’s going well for them.

And then taking that information and turning it into positive change.

So we do a lot of work with healthcare professionals, with health systems, and also social care, as well as working in research and in the policy sphere. We do a little bit of everything. That’s where I come into the conversation.

Yes, fabulous, because there is a lot happening in the world of epilepsy recently for sure. There’s going to be some really interesting bits that we’ll pick up from that point of view.

And let me also say hello to Jez. Introduce yourself.

Hi there. Yes, so my name is Jez Orbell. I was diagnosed with epilepsy in 1991.

We’ll come on to different aspects of my story, particularly around driving. But since that aspect of my story has developed, I’ve got much more into advocacy work and finding out what it really means to have epilepsy.

I’ve learned so much in just the last eighteen months to two years.

For so long in this journey, as we call it, I felt like I lived it a bit on my own, because I didn’t really know many other people who had epilepsy.

So even though people have a view of what epilepsy is like, I felt like I was a bit on the edge of it, because I haven’t had the full tonic clonic seizures that people tend to think of.

I also feel it’s important to give everyone with epilepsy a voice. And because my story goes back to the early 90s, it’s an interesting way to see how things have developed over time.

Well, it’s 1991, so that was when you were diagnosed. Right. So lots has happened since then, and a lot is happening now.

When we talk about epilepsy, it’s the most common serious neurological condition in the UK, and probably the world. But that’s a bit of a mouthful, isn’t it?

One thing that fascinates me about epilepsy is the amount of jargon. It’s like a medical dictionary.

So Tom, how would you explain epilepsy in really simple terms?

Well, I guess the official way to describe it is that you’re diagnosed with epilepsy if you have a predisposition to have epileptic seizures.

So what that means is if you’ve had one seizure that’s thought to be epileptic, as opposed to a non epileptic seizure, and you’re likely to have another one, then you’ll receive a diagnosis of epilepsy.

In practice, people usually have multiple seizures, and it can take time and investigations to reach that diagnosis.

To explain the difference, epileptic seizures are caused by bursts of electrical activity in the brain that sort of come out of nowhere.

Non epileptic seizures can look very similar and are completely genuine, but the trigger is psychological rather than that electrical activity. In that case, the person wouldn’t be diagnosed with epilepsy but with a different condition that also causes seizures.

So it really is that electrical activity in the brain that’s key in diagnosing epilepsy or not. Interesting.

Why is it important for care professionals to understand epilepsy, especially because many listeners work with adults or children in care?

You need an understanding of epilepsy to make sure you’re providing the right care.

It’s a very common condition. Around one in a hundred people in the UK have epilepsy. If you’re providing care to more than five people, chances are you’re already supporting someone with epilepsy, even if you don’t realise it.

Just understanding the basics can make a huge difference.

Yeah, I agree. And epilepsy can start at any time. You might be caring for people right now who don’t have epilepsy, but that could change.

Awareness of the different types of epilepsy is really important too. People often think epilepsy is one thing, but of course there are many different types.

From your personal experience, Jez, how would you explain epilepsy?

That’s an interesting question.

When I used to explain my absences, back in the day they were called petit mal, which isn’t a term that gets used much now.

I’d try to make it understandable. I used to say it’s like you’re watching a film and two seconds of footage have been cut out. You’re still in the same place, everything’s there, but something’s slightly different.

For me, it feels a bit like a daydream state.

I even had daydreaming written in my school report. That might mean nothing, but in theory it could go back that far.

The first time I became aware was in my first job, losing concentration while working on a computer. Even then, it was still three or four years before diagnosis.

Back then I didn’t really understand epilepsy as a condition, and now we know there are so many different forms, triggered in different ways.

That’s why awareness work is so important, and being here talking about it is a real privilege.

We really appreciate you sharing, because without lived experience you can only talk about epilepsy in theory.

There are lots of seizure types. Absences are one, but there are 21 seizure types now, am I right Tom?

Yes 21, that’s the updated classification.

Thank goodness. We used to have 63, didn’t we?

We’re not going to go through all 21, but it’s important people understand it’s more than tonic clonic seizures.

So Tom, what other seizures should people be aware of?

You can broadly group seizures into types.

Tonic clonic seizures are what people usually think of. Someone goes stiff, falls, and then starts shaking.

Absence seizures can look like daydreaming, but the brain activity is disrupting consciousness.

Focal seizures are very varied. Some people stay aware and feel strong emotions or sensations. Others lose awareness and might do things without realising, like pulling at clothes or walking into danger.

There are also myoclonic seizures, where a limb jerks briefly while the person stays fully aware.

Tonic and atonic seizures are opposites. With tonic seizures people go stiff and fall. With atonic seizures they go floppy and fall.

They’re short but serious, and they look very different from what people expect.

[12.58] TeeJay Dowe

And I think we’ve still got a big job to do in terms of raising awareness. I was over in Ireland last week delivering epilepsy training out there, and the level of stigma is still actually quite shocking.

They’ve done a survey in Ireland. Forty five thousand people in Ireland have epilepsy, and they reckon that’s probably under reported. In that survey, seventy eight percent of people said the stigma around epilepsy is still extremely high.

Now, I don’t know whether we’ve got equivalent statistics for the UK, but even here, there’s still a lot of stigma, misunderstanding, and people jumping to conclusions.

Even in care settings, unless professionals have worked directly with someone with a particular seizure type, there can still be a lack of awareness.

So in terms of statistics, Tom, have you got any figures for us?

Yeah. So around six hundred and thirty thousand people in the UK have epilepsy. That’s about one percent of the population.

There are some regional differences. There tend to be more people with epilepsy in the north of England compared to the south, and also higher prevalence in Northern Ireland compared to other parts of the UK.

There are also links with deprivation. So you tend to see higher prevalence in more deprived areas. We don’t fully understand why that link exists yet, but it’s very consistent across UK and international data.

The key thing is that even if you think you don’t know someone with epilepsy, you almost certainly do. It usually comes back to stigma. People don’t always feel comfortable talking about it.

Yeah, I’ve come across people in workplaces who don’t want to tell their employer unless they absolutely have to, or they ask for it to be kept quiet from colleagues.

You can understand it, but if they have a seizure and no one knows what’s going on, then no one knows how to support them. It’s a difficult balance, isn’t it, about how open you can be.

So in terms of equality and access to diagnosis and services, do those regional differences also translate into access to care? England, Scotland, Wales, Northern Ireland, is there variation there?

Absolutely.

If you look at the distribution of neurologists, they tend to be based in areas where there are fewer people with epilepsy. If you want to find neurologists, go to London. If you want to find people with epilepsy, go pretty much anywhere else.

The relationship between neurologist numbers and epilepsy prevalence is actually inverse, which is quite bizarre.

That means people in areas with higher prevalence may not have adequate access to specialist care, or they’re having to travel long distances to get the care they need.

Wow. That actually explains a lot.

When I speak to organisations and suggest that epilepsy might be involved, they often say they’re really struggling to get a diagnosis. That makes sense if access is structured that way.

And we talked about how common epilepsy is. There are also statistics showing that about one in twenty people will have a one off seizure at some point in their life.

And around one in fifty people will have epilepsy at some point in their lifetime.

When you think about how many people you know, that really puts it into perspective.

So thinking about what would make the biggest difference right now for people living with epilepsy, what actually needs to change at a policy or political level?

Tom, I’ll come to you first on that, and Jez I’d be interested to hear your thoughts too.

More investment in healthcare would be right at the top of my list.

Better access to neurologists, shorter waiting times, quicker diagnoses. And investment in research as well. New treatments, new technologies, new surgical options.

There’s a lot of potential out there. We just need the resources to bring it to life.

And Jez, from your own experience?

It always comes back to investment, but it’s also about how resources are used.

One thing that really stands out for me is the difference between my treatment back in the 90s and my treatment more recently with the Peterborough and Cambridgeshire epilepsy team.

I had an appointment that didn’t feel rushed. There wasn’t an obvious end point. They really took time to understand every aspect of my life and care.

Not feeling like you’ve got eight minutes and you’re being pushed out of the door makes a huge difference.

And epilepsy doesn’t just affect the individual. There’s a ripple effect. Families and carers need support too.

There isn’t a bottomless pit of money, but if we have time to really understand what someone needs, we can use resources much more effectively.

For example, access to work, benefits, transport. I didn’t claim anything related to epilepsy until the last ten years. If I’d known what support was available earlier, it could have made life much easier.

Yeah, absolutely.

Absence seizures are probably one of the seizure types that go unnoticed the longest, especially in young people.

How many children are told off for daydreaming? How many times do teachers say, you’re not concentrating again?

One of my biggest wishes is that epilepsy awareness and training was more widely available in school settings, so those signs are recognised earlier.

But let’s talk about the human side of things.

[23:57] Jez Orbell

So back in the late 80s, when I was living in Norwich, that’s when I first noticed something was happening, although I didn’t know it could be epilepsy.

I moved back to Peterborough and was working at Thomas Cook. It was a very stressful time, and a colleague said to me, you’re having blackouts, what’s going on?

Sometimes it takes someone else to point it out to you. I’m really grateful she did.

That’s what led me to see the GP and eventually get diagnosed.

This had been going on for at least three or four years.

When I went to the doctor, they told me not to drive until they knew what was happening.

I had an EEG at Addenbrooke’s Hospital. My care there was generally good, but there was one experience that really stuck with me.

A consultant said in front of students, we don’t quite know what to make of him, and then walked off.

I was 22 years old, on my own, and had no idea what to do with that information.

Things have changed a lot since then.

Another important bit of context is that my diagnosis happened six months before the first website existed. You couldn’t Google anything.

If you wanted information, you waited for your next appointment or you went to the library. You were working with scraps.

Now, of course, there are brilliant resources online, including Epilepsy Action’s website.

Looking back at medication records now through the NHS app, I can see how much medication I was prescribed.

At times, my head was spinning, my eyesight went, and I couldn’t focus at work. The medication was almost worse than the seizures.

Sometimes I was sitting in a dark room at work trying to function, feeling guilty that I should be working.

One challenge at the beginning was not knowing anyone else with epilepsy.

But on the other hand, not having all the information meant I still did things. I ran marathons. I abseiled down buildings.

If I’d known all the risks, maybe I wouldn’t have dared.

There’s a balance between having information and not being paralysed by it.

And you were told to stop driving straight away.

Tell us about the driving journey.

Yes. That was February 1991.

The guidance changed between one year and two years seizure free. The longest I ever got was four months before I had another absence.

I remember breaking down at work, thinking I was back to square one.

I never imagined it would take thirty plus years.

I stopped medication for several years. I still had absences, but they were manageable.

Then with encouragement from my wife, I tried again. Levetiracetam, then ethosuximide.

Something clicked.

[35:35] TeeJay Dowe

And that brings a whole new set of emotions, doesn’t it.

Absolutely.

You’re basically giving up one lifestyle that you’ve lived for over half your life. And you’re asking yourself, what is this new lifestyle going to be like?

And I was talking to someone recently because I bought my first car at the age of 56. There’s not many people that can say that.

I remember going through the drive through at McDonald’s and I thought, you know what, this is the first time I have ever done this from the driver’s seat. That’s amazing.

Amazing. Let me just get this right. From the age of 22, you didn’t drive or have a car until you were 56? Tell us what that’s made possible and what it means to you to get the car back.

I didn’t. Thirty four years. I didn’t own a car for thirty four years.

You feel like a passenger all the time.

There’s one occasion I was talking to my wife about. Before my dad passed away, he was in a care home and I was going to go and see him that evening. This was before I got my car back.

I had the situation where I could wait at home for her to come back from work and she could give me a lift, but I made the choice that I wanted to keep moving forward on my terms and take control.

So I was using public transport. Even though it took longer, I wanted to feel like I was in control.

When you don’t have control, you don’t want to defer everything to everyone else. You don’t want to be ferried around. You don’t want to take up their time or feel like a burden.

I said, no, I want to go and see my dad and I want to do it my way.

Sometimes it doesn’t always click with people. They say, well, it’s fine, I could do that for you. I don’t want you to.

I just want to know that I can actually have that control myself. So the idea that when you get your car back, you can say, I can do that. I can help you for a change.

That’s really important for me. Last year my wife was helping a couple of elderly friends and she was almost at risk of burnout with the amount of running around she was doing. I was able to pick up some of that for her.

Whether it was getting shopping or doing those kinds of things. At the very beginning there was no online shopping or deliveries. You had to carry everything yourself.

We take the internet and deliveries for granted now. They weren’t a thing. Having the choice is the important part.

And the fact that I’m sat in this room now, I could have done this remotely, but I didn’t want to. I’m fascinated by the podcasting process.

I love having conversations face to face. I wanted to drive here and be here. It’s part of the story.

You drove here from Peterborough to Stoke on Trent. I love that, to sit in the studio.

Wow. That’s dedication.

It is. It’s absolutely brilliant.

I can’t imagine not having my driving licence. It’s that independence, being in control of your own life, where you go, what you do, not relying on other people.

I heard someone say recently, my car’s been stuck at the mechanics for three days. I said, well you try three decades.

At the beginning you don’t think it’s going to be that. Time goes by and all of a sudden, when you bookend the experience, you realise what it’s been.

A lot of people with epilepsy don’t drive. People understand that as a possibility, but when they hear thirty four years, it becomes a different story.

They start thinking, what opportunities have I missed? Where could I have gone?

I still navigate that myself. How could things have been different? I’ve got no regrets. I’ve adapted and made the best of the cards I’ve been dealt.

And the weird thing is, I consider myself very fortunate. If you’re going to be dealt the epilepsy card, I’ve been dealt a really good hand.

I remain positive because I know people who have it far harder. I think my story gives people hope. Even if it’s thirty something years in the future, things can change.

And who knows, we might have self driving cars by then.

But have there been any challenges in getting your licence back? And are you still on medication now?

Yes, I’m still on medication.

This year I’ll be three years seizure free. I was surprised how simple the process was. I applied about six weeks before I was entitled, but I didn’t want to risk applying right at the twelve month mark.

It still took from September to December to get the licence back from the DVLA.

I expected more tests or for insurance to be sky high, but I’ve got a five year licence.

I work in Grantham, north of Peterborough. My commute was over an hour and a half on buses and trains. It’s now been cut in half. It gives you time I didn’t have before.

One thing I will say about how things have changed. The licence came through just before my birthday and my daughter said, I can give you a lesson in my car, Dad.

I didn’t even know you could get an hour’s cover.

We went out on the back roads near our village. It was a bit like riding a bike. Then she said there’s a B road up there and I said no, no, no.

After about forty five minutes, that was enough.

To be given a driving lesson by my daughter who had just turned twenty three, the same age I was when I was diagnosed, that was a special moment.

To go from not leaving your village to driving to Silverstone to do a lap of a circuit, even at low speed, that completed that part of the journey for me.

We’re not jealous, are we Tom? I want to do it.

Not at all. Honestly.

That’s so cool. So we've talked a little bit around experiences. Thank you so much for sharing. It's just so interesting to know what it's been actually like, those milestones and those challenges and the medication and all the rest of it. In terms of treatments, Tom, let me come back to you because the World Health Organization are about halfway through their ten year plan, the Intersectoral Global Action Plan for epilepsy and other neurological conditions.

What’s going on in the world of treatments? Any new treatments or technology on the horizon?

I’ll start with medication. There haven’t been massive innovations recently. Some medications we still prescribe have been around for a hundred years.

There are promising developments in personalised medicine, using genetics to help choose the right medication, particularly for genetic epilepsies. But it’s still early days.

Where things get exciting is technology. There’s been a boom in wearable devices, surgical developments, and tools people can use themselves.

We have wearables that alert others during seizures, bed monitors for night time seizures, apps to track seizures and medication, and AI tools that identify patterns like sleep deprivation triggering seizures.

AI is also being used to read EEGs more efficiently, pulling out seizure activity so clinicians focus on relevant sections.

It is quite exciting. I was catching up on things like the more advanced MRI scanners. So we’ve gone from an MRI three to an MRI seven, and even just looking at the images side by side, the level of detail you can see is incredible.

Particularly with focal epilepsies, it might mean you’re finally able to pinpoint things in the brain that couldn’t be seen before and get a better diagnosis and understanding. I think that’s really exciting.

And some of the surgical developments as well. I got super excited. I’m a vagus nerve geek.

There’s a lot of this flurry of external vagus nerve stimulators in the health and wellbeing market, and they’re all talking about epilepsy. It feels like there’s a race on to see who’s going to get licensed first.

That’s going to be a real game changer, isn’t it, Tom, if you can see whether VNS stimulation works for you without having to have the generator implanted in your chest and attached to the vagus nerve.

I was also reading about another device, I can’t remember the long name for it, it’s nicknamed EASY. Have you seen that?

You’ve got a generator under the chest wall, like the vagus nerve stimulator, then an electrode up the side of the neck, and then a sort of pad made up of linked hexagon shapes that sits between the scalp and the skull, delivering electrical activity into the part of the brain you want.

What really caught my attention was that it looks like the battery can be recharged through the skin. So you wouldn’t need another operation just to change the battery.

Yeah, that was cool in itself. And I saw they were planning to use it for pain management and Parkinson’s as well, if I remember right. That work was coming out of the Royal Victoria in Newcastle upon Tyne.

I just started thinking about the future of things like vagus nerve stimulators, not having to have repeat operations, just charging the device through the skin. That feels like a big step forward.

Yeah, it’s fascinating. There’s a lot happening with VNS absolutely.

We’re seeing implants that are less invasive, like the one you mentioned that sits under the scalp rather than going through the skull. That means the procedure is quicker, safer, and recovery is easier.

And then you’ve got technologies that sit completely externally, so no surgery at all, that can stimulate the vagus nerve.

There are also long term wearable EEG devices being developed that just sit on your head and take measurements without needing any surgery.

Is that the one that looks like a spider that sits on your head?

Yes. Yeah.

I’ve literally got a Post it note on my laptop that says, “Find the photograph of the spider.” You wear it under a beanie, so you wouldn’t even know it’s there. That sort of technology is just incredible.

I’ve also been watching with interest for the last four or five years, Elon Musk’s Neuralink. I don’t know whether you guys have.

That is phenomenal.

Neuralink is a brain computer interface. It sits in the skull with tiny filaments connected to individual brain cells, uploading and downloading information.

The people who’ve had it implanted so far, particularly those with paralysis or motor neurone disease, it’s been life changing. And I keep thinking there has to be an application for epilepsy somewhere.

They’ve finally announced that epilepsy and other neurological conditions are very much in the picture when they expand to larger areas of the brain in future versions. That’s incredibly exciting.

And the whole AI aspect around that as well. It really is exciting.

Absolutely. It’s a good time to be working in epilepsy technology.

One thing I wanted to touch on is SUDEP, sudden unexpected death in epilepsy.

About twenty one people a week die from SUDEP, and that’s why some of the wearable devices are so important. It’s a shame that many of them are very expensive at the moment. Hopefully prices will come down, or maybe the NHS or NICE will approve some of them.

A few years ago, I remember seeing a wearable apnoea device on a website. It looked very much like a prototype, not pretty at all, a big box worn at the neck. But I loved the concept.

During certain tonic or tonic clonic seizures when breathing is restricted, it would detect that and raise an alarm to alert someone nearby. It looked like it was going into further trials, then it just disappeared. I don’t know what happened to it.

It does ring a bell for me. I’m fairly sure I’ve spoken to the researchers involved, but I haven’t heard anything about it recently, like you say.

I keep following that area with interest because twenty one people a week is huge.

From a technology point of view, I’m always thinking, what are we doing to reduce that number? That’s why I was so excited to see that device, and why I was disappointed when it disappeared.

We do at least now have wearable devices worn on the arm or wrist coming onto the market, so it feels like progress is happening somewhere.

Absolutely. And although it’s perhaps less tech heavy, SUDEP Action do have a really good app for managing SUDEP risk.

If you have epilepsy or you care for someone with epilepsy, you can use it to assess risk factors and look at ways to reduce them. It’s a really useful tool that we always recommend.

Amazing, thank you for sharing that. That number, twenty one people a week, is devastating when you think about the families affected.

So talking about treatments and technology naturally brings us to care plans.

Jez, what’s been your experience of having involvement in your own care plan over the years?

For a long time there didn’t really seem to be much of a care plan at all, other than medication.

It was very much, take this medication, come back in six months, see how you’re doing. There might be some mention of diet or vitamins, which are obviously important generally, but it felt quite sketchy.

Only in the last few years has there really been more structure, and even now it’s still very medication focused.

One thing I have struggled with is medication supply. I’ve had issues twice with ethosuximide where supply was delayed despite the pharmacist having plenty of notice.

On one occasion I was literally at the point of running out and had to collect medication from a different town. That’s incredibly stressful when you’ve come so far.

And another issue is when medication suddenly looks different. Different colour, different shape, different manufacturer. Even if it’s meant to be the same, it’s worrying if no one explains it properly.

That’s a really important point. For some people with epilepsy, switching brands of the same medication can have a real impact.

It’s not like most medicines where brand doesn’t matter. People should absolutely question changes and make sure they’re getting what’s right for them.

And I have to say, when we talk about gold standard care plans, the ones from Epilepsy Action, including the midazolam care plan, are some of the best I’ve seen. I signpost people to them a lot.

So last few questions.

What does good epilepsy care look like in practice, especially for people working in care settings?

For me, a really solid care plan is number one. Not just what to do during a seizure, but what to do the rest of the time.

Continuity of care is crucial. Knowing the person well, understanding their history, keeping good records, and making decisions for the person, not just the condition.

And making sure the person with epilepsy trusts the people around them.

We’ve been here, there and everywhere with our epilepsies, haven’t we? I like it.

So I’m going to wrap us up. I think it’s been a brilliant conversation.

What key message would you like to leave listeners with? I’ll come to you first, Tom, and then I’ll let Jez have the final word.

Well, I say that, I get the final word, don’t I? Let’s face it, it’s my podcast. But the final guest word.

Tom, what message do you want to leave listeners with?

I mean, for me, epilepsy awareness is really key.

You don’t need to know everything. Just having a few basic facts about epilepsy, understanding what seizures can look like, and knowing some basic first aid can make such a big difference.

If you know those basics, you’re much better placed to support the people around you, whether that’s in work, in care, or in everyday life.

That’s really the foundation. Learn a little bit, and it sets you up for success.

Yeah, fabulous.

I’m going to come back to you after I’ve gone to Jez, Tom, just so you can tell people where they can go for information and support. Feel free to plug, I’m absolutely fine with that.

It’s really important that we signpost people properly.

So Jez, what message do you want to leave listeners with?

I think it’s really important to talk about epilepsy.

I’ve never been too worried about sharing my own situation, possibly because mine has been relatively mild compared to others. But I know stigma is still very real for a lot of people.

What I’ve found is that more often than not, if people understand what’s going on, they actually want to help.

What you said earlier about awareness in schools is fantastic. The work happening in workplaces with epilepsy training is really important too, and I’d love to see much more of that rolled out.

I’ll also say that what Epilepsy Action are doing around awareness is brilliant. I’ve had conversations with the team there and they’re thinking big.

Why can’t epilepsy awareness be on a Champions League screen at a football club? Why shouldn’t it be that visible?

It’s about making the message accessible and understandable, and having those conversations so people realise epilepsy isn’t just what they’ve traditionally thought of as seizures. It can affect people in lots of different ways.

And I’d love, one day, to see a public figure or celebrity with epilepsy really come forward and champion awareness. That’s definitely on my wish list.

Yeah, absolutely. Such a shame that stigma still holds people back.

So, information and support. Tom, where do people go?

So people can visit epilepsy.org.uk, which is the Epilepsy Action website.

There’s a huge amount of information on there, as well as support services for people with epilepsy, carers, parents, and families.

We also do a lot of work with healthcare and social care professionals, so anyone involved with epilepsy in any way can come to us, use the website, contact our helpline, and get the support they need.

Amazing. And we’ll make sure all of that goes into the show notes so people can find it easily.

So I just want to say thank you both so much. It’s been such an interesting conversation.

I’ve loved hearing both the professional and the personal perspectives, and I’m really excited for listeners to take all of this in.

Thank you so much for investing your time to be with me today. It’s been an absolute pleasure.

And hopefully, at some point in the future, we’ll be doing a ding ding round two.

That would be fantastic. Thank you so much for having me.