Epilepsy in Reality: Beyond What You See

A diwyny siweidd i newydd ar Ond Followin Moa Mae Ghost yw Isolgy bali newydd yw med Defne diwyted I ο Ddenwydd, ar gowe siwww saving a Gennan I am Mae Solet yn llweithio o occurs Metro eraill mwy guw'm exciting a diwynydd i ddiwynydd, a Llywna yn y ffylacys, yw i ddweud, cymrydd i ddweud, llwynydd, i ddweud,'n cyfyrdd, a gweithio cymryd i'n siwyd yn fwynt, ac mae'r ymryd i ddweud, ac mae'r ysgwyrdd yn ffysod, a gweithio yw llwybod i ddweud i ddweud, ac mae'r ffysod i ddweud, ac mae'r ffysod i ddweud, ac mae'r ffysod i ddweud, ac mae'r ffysod i ddweud, ac mae'r ffysod i ddweud, ac mae'r ffysod i ddweud, does TFHC? Mae'n re頱yt privu ei fŵI reo. Mae'r f Venio strageg aemoddau telefonio neu llawer lan ac neww i drothio Тeluriau. Rydym nw yr helping g 씨 ar gyno â chocolatesys yn'r puŵI goynuaeth, ac mae mio ddat Selbstelwy o F WasimioUT nice am oedd dda, merdonau Cynch yr Ysdau. Mae droppinghten ei twy a credu wedi na can Helpamp lastio NEW graful corkhausol. Mae'r fŵI gynllunau er ymdynau eu ymdynau, ac mae'r fŵI gysylltiad yn gwaith, ac mae'r fŵI ymdynau er ymdynau er fŵI. Mae gwaith ymdynau er Tom i Gers, ac mae'r fŵI gysylltiadau, ac mae'r fŵI gysylltiadau'n gwaith, ac mae'r fŵI gysylltiadau, ac mae'r fŵI gysylltiadau, ac mae'r fŵI gysylltiadau, ac mae'r fŵI gysylltiadau, ac mae'r fŵI gysylltiadau, ac mae'r fŵI gysylltiadau, transp'u yeast suppressed, f invention, maladies yngاذ hynny a fdefynit. Mae'n enrolych yn urr ynerg meddwl enn bwysio uncont south amdenion gali kopwch tŷt Ausodă enostosio siol gwya'nt ar niegkyddom unr mildawt am erd 단ше ddim yn konw nad oes repl jeddidau sydd ei pŵr unrhoeg Pillיכ Lodic adg L besseron ond Egg bodот a Wrth w leaders, yn dat'r plepil. Mae diwchys wedi'ch g mightw Powder i Feliaff XII. Mae Y Sale Suffol Pati D4? C iawn, yma pysbl pobl ast yn edrych viau a'r llywillu Woah! most Sadly and how things have actually changed will come on to different aspects of my story about about my driving but since that aspect of my story has developed i've got more to the advocacy work and finding out what it means to actually have I've learnt so much in just the last talking 18 months to two years for so long in this journey I've sort of lived it a bit on my own as it were because I didn't really know too many other people that had actually had epilepsy so even though people have a view of what epilepsy is like it feels like I've been a bit on the edge of it because I've not had the full tonic tonic seizures as people know them I also feel like it's important to give everyone who has a form of epilepsy a voice because my story goes back so long back to the early 90s I think it's it's an interesting way to actually see how those things have a very developed over time yeah looking forward to hear what that difference is and those 30 years well it's 1991 so that was when I was diagnosed it's yes, so lots happened since then when we talk about epilepsy it's the most common serious neurological condition in the UK and probably safe to say in the world but that's a bit of a mouthful isn't it? Well one thing I've fascinated to me about epilepsy is there is so much jargon when we talk about it it's like a medical dictionary so I'm going to ask you Tom how would you explain epilepsy just in really simple terms? Well the I guess the official way to sort of characterise it is you get diagnosed with epilepsy if you have a predisposition to have epileptic seizures so what that means is if you've had one seizure that is thought to be an epileptic seizure as opposed to a non-epileptic seizure which is slightly different and you're likely to have another one then you're going to be diagnosed with epilepsy but in practice usually people have multiple seizures and it just take a little bit of time and there's lots of investigations to get to the point where you're diagnosed and just to sort of explain the difference between epileptic and non-epileptic seizures epileptic seizures are caused by the kind of busts of electrical activity in the brain that sort of come out of nowhere almost whereas non-epileptic seizures usually the underlying kind of trigger for them is something psychological rather than physical so you could be having seizures that are 100% genuine but if the trigger is psychological rather than that bust of electrical activity then you wouldn't have epilepsy you'd have another you know one of the other conditions that can also cause seizures so it's that electrical activity in the brain that is absolutely key in the diagnosing of it's epilepsy or it isn't yeah interesting thank you so why is it important for care professionals to understand epilepsy particularly because obviously people that we're speaking to today are in that world of care whether that's with adults or children so why is it so important that care professionals understand it? I think you need to have an understanding of epilepsy to be able to make sure you're providing the right care to people and I think because it is such a common condition because it's you know one in a hundred people in the UK have epilepsy if you are providing care to more than you know five people at the time you are going to be looking after people with epilepsy even if you're not necessarily aware of that straightaway so it's absolutely vital just understanding the basics can make such a massive difference to people yeah agree and epilepsy can start at any time so you might be looking after people right now who don't have epilepsy but that could change and I think also that awareness of the different types of epilepsy that will get onto a little bit later people think of epilepsy as one thing and of course there are many different types of epilepsy so I'm excited to have that conversation and raise that awareness for sure from a person experience to you just you know how would you explain epilepsy? Well it's an interesting question really because when I found that I was explaining my absences I mean back in the day used to be called Petty Mall it's a term that doesn't get used as much yeah these days but you tried to put it in a context that is is understandable so what I used to say is like you've been watching a film and then two seconds of footage had been cut out of it so you might all be in the same place and everything's there but things are sort of slightly different for my own personal experience it's kind of like a daydream state or for a moment in time so while my seizures aren't now managed it took a long while to get to that point and so after that initial diagnosis in 1991 I was 22 then I do think I was probably living with it for a number of years before that but it hadn't really been picked up we talked about a primary school you know children daydreaming in class you know I actually had it in a school report now that's that may just be just one of those things I've put in my school report but in theory it could even have gone back as far as that the first time when I was really aware from it personal point of view was when I was in my first job I was losing concentration when I was doing some tasks on the computer that was the first time I was kind of aware of the the feelings that I had later but even then it was still like three or four years before the official diagnosis came through but you know that that's my experience and I didn't really have real knowledge of epilepsy as we've come to think about it and even then we know that there are so many different forms of that condition it can be triggered in so many different ways and that's why all the work that's been done with awareness is so important and that's why having the opportunity to be on an episode like this is just a real privilege. So I appreciate that. Thank you. We appreciate it because it's all very well from a professional point of view, but you tell them, or myself as a pharmacist, but when you don't have actual experience of that condition, then you can talk about it in theory and you can raise the awareness, but you don't really know what it's like. So I love that we get to understand this a little bit from your point of view. Lots of different seizures. So you've alluded to the fact that absences are one type of seizure, but there are 21 seizures. Am I right, Tom? 21 seizures. Yeah. 20, the new updated classification. Yes. Yes. Thank goodness because we did our 63 rides. We did. We did it even more before that. So you talked about some of the reclassification. There's a lot of enough jargon in it. We've got a whole new layer now as well. I'm a way. So I'm trying to get my head round or my tongue around some of the titles. And so we've got 21 different types. We're not going to talk about 21 different types today. We'll be able to. But I think it's important for people to understand that there is more than just tonic, clonic seizures, which the general public, of course, would be most familiar with or think of when we think about epilepsy. But what are the seizures, Tom? Should people be aware of? Well, there's a few, I suppose there's the 21 official definitions, but largely you can group seizures into a few different types. So like you've mentioned, the clonic seizures are the seizures people will think of when you say seizure. They're the ones where someone sort of they go very stiff. They'll fall over and then they'll start shaking. If you see a seizure on telly, that's usually what it's going to look like. So that is one type of seizure. But there's also seizures that are more difficult to sort of notice, like jesus mentioned absent seizures. They can look like daydreaming. They can look like you're just sort of looking off into the distance and not paying attention. But actually what's happening within the brain is that electrical activity disrupting your consciousness. Focal seizures are probably the hardest to describe because they can look so many different ways. So focal seizures, you can either be conscious and aware or you can lose your awareness during a focal seizure. And the experience of the seizure can be very varied. So for some people, they might retain their awareness, but they might feel an emotion very strongly or they might get a really strange sensation. For others, they might lose their awareness and they might do unusual things. They might start pulling at their clothes. They might, if you're out walking on a road, some people will keep walking, but they'll have lost their awareness, which obviously risks walking into a road. Or I know quite a few people that have walked onto railway lines and things like that, off platforms when they've been having those types of seizures. But they can look very, very different to different people. And then there's myoclonal seizures. So they're sometimes called jerk seizures because your arm or leg will just jerk out. So they only last a second, although you can sometimes get a few in a row. But the person is completely aware of what's going on, but their arm just moves without them telling it to. And then there's tonic and atonic seizures, which are, I guess, kinds of opposite sides of the same coin. So for tonic seizures, a person will go very stiff and fall over. And for atonic seizures, a person will go very floppy and fall over. But again, they usually don't last very long, they're a few seconds up to a minute. But you don't necessarily want to be falling over all the time. They're still seizures. They're still serious. They're still unpleasant, but they look very different to what the public might think of when you say seizure. Yeah, yeah. I agree to some of them. I should say are quite bizarre in their presentation. And general public are very easily jumped to and not so nice conclusion, other than all that poor persons having a seizure. So I think that is so so important that we're still through this podcast and lots of different other avenues, of course, raising awareness of the different types of seizures that present very differently. And I think we've still got a big job to do in terms of raising awareness. I was over in Ireland last week working with some medical trainers to deliver epilepsy training out there. And the level of stigma still is actually quite shocking. They've done a survey in Ireland. So I was looking at some of the statistics for how does that compare with the UK? 45,000 people in Ireland have epilepsy. And they reckon that's probably under reported because as they said, they've done a survey and 78% of people in Ireland consider still that the stigma is extremely high. And I don't know whether we've got statistics through the UK and that regard, but you know, even here in the UK, there's still a lot of stigma and lack of awareness and jumping to conclusions. So people definitely misunderstand it. And even in our care settings, there still is again a lot of misunderstanding and lack of awareness unless they've got somebody with a particular type of seizure that then they get to understand a little bit better. So in terms of statistics, Tom, have you got any figures for us? Yes, there are 100, 100 people in the UK has epilepsy. Tell us more. Yes, so it's about 630,000 people in the UK. So yeah, it's about 1% of the population have epilepsy. There are slight regional differences. There's slightly more people in the north of England, down south, more people in Northern Ireland than in some of the other countries, England, Wales and Scotland. There are links with deprivation, so you do find more people with epilepsy in more deprived areas and we don't fully understand what that link is yet, but it is something that is present in data from the UK as well as data from other places. So yeah, it's a very, very common condition and I suppose the key thing for me is that even if you think you don't know someone with epilepsy, you absolutely do. It just, it comes back to like you just mentioned the stigma, people won't always tell you about it. Yeah, yeah, I've come across people who in a workplace don't want to tell an employee unless they really have to or can you please keep it quiet from my colleagues? And you kind of understand it, don't you? But if they have a seizure and somebody doesn't know they have epilepsy, then they don't know how to look after that person. So it kind of swings around about, says, isn't it, how open you are with it or not. So in terms of equality and accessibility to diagnosis and things, so do those figures because they differ north and south and you know, England, Ireland, Scotland, Wales is there any difference in access to services and that kind of thing? Absolutely. If you look at the distribution of healthcare professionals, the neurologists are in the places where there aren't people with epilepsy. The, if you want to find a neurologist, go to London, they're all in London. If you want to find a person with epilepsy, go essentially anywhere else. I can't remember the numbers off the top of my head, but the relationship between presence of neurologists and prevalence of epilepsy is inverse. Like you get more neurologist in places where the number of people with epilepsy is lower, which is really bizarre to think about. But that is how it is. So there's the most robust services are in places like London, which leads to either people in the areas with a higher prevalence, not having access to the correct level of care. Or it means the people are having to travel halfway across the country to receive good quality care. So yeah, there are real, real issues. Wow. I'm actually quite shocked to hear that. But it makes a lot of sense when I'm talking to organisations and they, you know, say, and just, so have they, it sounds to me like it's epilepsy, have you had a diagnosis? No, we're really struggling to get that diagnosis. So that probably explains why. And you're sure it's about, you know, it's so many people do have epilepsy. You think you don't know somebody but you probably do in the statistics that I've seen again recently. Are they reckon that one in 20 people will have a one-off seizure at some point in their life. And it's just that blows my head off because it's like, you know, way more than 20 people right. So you definitely know somebody now. That might not be epilepsy, of course. It could be non-ephylactic seizures. And then the statistic of one in 50 people will have epilepsy at some point in their lives. And again, like you think, well, I know way more than 50 people. You're right. Really good chance that, you know, several people at least to have epilepsy, but you might not know that they have, because they haven't said anything. So, so interesting. And in terms of what would make then the biggest difference for people living with epilepsy right now in terms of what needs to change policy or iydyn gyfer gyfer oedd? 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One of the other interesting aspects now is because you have the NHS app, and you can look back on the medications that you were given back in the day and you sort of go back and you scroll back and say, oh, OK. I was on what dose, so that really is almost as if they tried to top me up on certain medications. My head was actually spinned my eyesight had gone and I'm member sitting in the medical room at the place where I work. Where I just could not focus on anything and my life has effectively been made worse by the amount of medications I was being given at that time. So it was almost better just having the occasional absence than with the medication I was being given. And there's that situation where you're feeling guilty. I should be working here and then I'm just sat in a room in the dark just trying to make sense of what's going on. So, you know, you've turned an advocate this stage and you don't know anyone else that has that condition. So that's one of the challenges that I had right at the very beginning. But one of the things I will say is kind of double edged. am sofn. or both sides of the coin, how do you want to word it? In some ways, I went and did certain things, which if I had too much information, I might not have been to try, I might have stayed at home and not done things. So I still went out and I did marathons and things like that. So I did, you know, we're recording in the London marathon is after me at this weekend. There's lots of people that are doing that and it's an amazing experience, but I would may well not even have attempted that, if I thought if there was sort of risks involved, but I had a wonderful experience of actually taking part in something like that. I've absorbed the side of the building, so sometimes too much information can actually be a bad thing because you can start to worry about too much, but obviously you've got to get good advice as well. You do indeed, so lots of medication, all work in different ways, basically trying to reduce that electrical activity in the brain to stop the seizures happening. And often what I see as a pharmacist is, what we're aiming for, jargon, is optymotherapy. That's like the Holy Grail that's it. Optymotherapy, the smallest dose of the fewest drugs and the least number of side effects that really is quite challenging to achieve. And so they'll start drug of choice, whatever that might be, depending on the types of seizures that you have, because of course that every drug treats a procedure. Start with the smallest dose, build it up, build it up, or can't go any higher, I'm quite good control of the seizures. That's another one, and build it up, build it up, oh, nearly there, nearly there, let's add another one. And it was weighing up that like quality of life, how we want the side effects, you know what is the impact? If I got to take it four times a day, man, I can't remember to take it four times a day. And then you forget, and then you have a breakthrough seizure. And it's just this whole conundrum that we have to work through, isn't it, to get to a point of control of seizures that is not impacting your life in a detrimental way. And I think, you know, we have to weigh up that balance. I've heard a lot recently talking to various, particularly children's services, where young people have been put on a particular drug, and it's caused a lot of anger issues and behavioral challenges. That family's a really, really struggling with that side effect, and then clinicians being reluctant to change it because it's controlling the seizures, but the behavioral issues far outweigh that quality of life for the family, as well as the young people. So it's interesting to hear your experience of being on meds and how that made you feel. So tell us more about, you said that they'd advise that you stop driving straight away. Tell us more about the driving journey. So to go. - Well, the driving journey, yes. So that was February 91, and they'd said to me that it could, it did change from one year to two years, and back to one year to go see your free before, could get my license back, and you sort of think, well, okay, that's not great, but, you know, we'll, that's, it is what it is, and you sort of manage it your best you can. And the most I ever went back in the '90s was four months, and then I had an absence in the decision to come back to my son's studio where I was working, and I sort of broke down into his office, and I thought, I'm back to square one, do you know what I mean? And because you sort of think, on getting somewhere, and then you're back at the start again, and you just don't know how long it's gonna take. Now, what I would have thought if it was gonna take as long as I did, take to get my license back, I mean, I can skip through various aspects of this story, to give you the whole process, but there was different medications tried, I used to call it like a cocktail that was tried, and this is a well-wooled try-better, there's a bit of that, different levels, and whatever, and you get to the point where, in the early 2000s, I felt almost like, in terms of treating that, I won't say I felt like, oh, I got forgotten, but it was on the slide, this isn't gonna work for you, I'm sorry, we've tried all these different things, and it wasn't really working, and I made a decision with my consultant. I don't see the point of continually putting chemicals into my body if it's not actually going to make a difference. I was kind of coming to the terms that it wasn't gonna happen for me, so we managed a reduction of the tablets until I came off them, and it was probably six, seven years, well, I wasn't taking any medication for it at all, and my life didn't really change that much, I was still having an absolute sense, Easter's to say it was like three or four a day, or a couple of weeks, or whatever, sometimes it was plus or minus one or two, but it wasn't unbearable to live with, if you know what I mean. And then I met my current wife, and we got together, we started talking about it, and she said, "Well, possibly there was maybe "there's some new treatment on the market, "maybe there's a new medication, "you don't know, things change." So it was sort of the looked into it, and we did go back to the side again as it were, and then I was on, let me just say a term, which I still am on, and then go through to 2013 with my epilepsy nurse, she suggested including, ether subsamide, now having those in tandem for whatever reason or so, I cannot explain, something about that seemed to click. So it didn't happen immediately, it was a few months, but come to September 2023, I went, see you free, so a year from that date, I was able to apply for my license again, and I think the thing about that was, you then get a whole new set of emotions come in place, and okay, I can apply for my driving license, then should I, because it's three and a half decades nearly, and it's not just your life you're thinking about, it's the people around you, so you're basically giving up one lifestyle which you've lived over half your life for, and what is this new lifestyle gonna be like? And I was talking to someone recently, because I brought my first car at the age of 56, there's not many people that can say that, and I remember going through the drive through it, my donalds, I thought, you know what, this is the first time I've ever done this from the driver's seat, you know. - That's amazing, let me go get this right, so from the age of 24, - 22. - You too, you didn't drive or have a car till you were 56. - I didn't, 34 years, and a car for 34 years. - Wow, amazing. (laughing) - I just was like, just stop and clarify that, don't I, you're that properly there? So, I'd like, that is, well, I must be life changing, to tell us what that, what's it made possible and what's that mean to you? - To get the car back. - To get it, yeah. - Well, you feel like a passenger, all the time, and there's one occasion, I was talking to my wife about this, before my dad passed away, he was in a care home, and I was going to go and see him, that evening. So this was before I got my car back, and I had the situation whereby I could wait at home for her to come home from the work that she was doing, and then she could give me a lift to go over and see him. But I made the choice that I want to keep moving forward on my terms and take control. So this was, I was using public transport to do that. So even though it took me longer to make that journey, I wanted to feel like I was in control. When you don't have control, you don't want to just defer everything to everyone else, you don't want someone else to ferry you around, you don't want to take up their time, you don't want to feel like a burden, whatever. And I said, no, I want to go and see my dad, and I want to do it my way. And sometimes it doesn't always click with people that, well, it's fine, I could do that for you. I don't want you to, it's fine, I just want, no, that I can actually have that control myself. So the idea that when you get your car back and say, I can do that, I can help you for a change, you know? So that's really important to me. And we had a couple of elderly friends who my wife was helping last year. And she was almost sort of risk of burnout herself with an ant running around that she was doing. And I was able to pick up some of the slack for her. So whether it is going to get shopping for them. doing those kind of things because again right at the very beginning there was no eye-cannot order shopping and it can be delivered to the house you can't actually do that you actually had to carry it all yourself didn't have delivered your to no we take you for granted don't wait internet websites yeah who delivers were not a thing so actually having the ability to at least have the choice that's the important thing and again the fact that I'm setting this room now I could I could have done this remotely but I didn't want to do it because I'm fascinated by the whole podcasting process and I love having conversations with people who've been able to do it face to face I just wanted to drive here and be there and it's part of the story you know. You drove here from Pisavera to Stoke on Trends I love that to say in the studio wow could have been not my screen like you Tom. That's dedication. It is right it's absolutely brilliant absolutely brilliant I can't imagine not be having not been able to have my driving license and just it's that independence isn't it and just that be like say being in control of your own life the way you go what you do and all the rest of not relying on other people yeah and I heard someone fairly recently say oh my car has been stuck in the canyons for three days and I said well you try three decades you know it's like you know it's um that that's the thing at the beginning you don't think it's going to be that time goes by and then all of all of a sudden to book and the experience I think is the key thing to to realize because a lot of people with epilepsy are in this position where they don't drive and I think people as a whole they understand that that is a possibility that is one of those those situations but when they sort of hear that not driven for 34 years then they sort of say whoa it kind of takes a different a different story in itself because anything what opportunities have I missed out on what could I have done at this point where could I have gone and that's in its own way that's one of those things I'm still kind of navigating myself how could the things been different I've got no regrets or anything like that you know I've had to adapt and make the best of the the cards have been dealt you know and and I and the weird thing is I consider myself very fortunate you know because if you are going to be dealt the epilepsy card I've been dealt a really good hand at it so you got to sort of remain positive or I remain positive with my own personal point of view because I know that there's people out there that have it far harder and I think your story is brilliant in terms of people who are living with epilepsy that at the moment are not able to drive who knows at some point gives you hope that you know there's an even of its 30 something years somewhere in the future it may well be possible and it can change absolutely and who knows we might have self-driving cars by then and it not make you do it for yourself to get in a route it's probably not the two distant future isn't it so brilliant I love that you've got your licence but that you've driven here today and it's not even like next door as it is quite a distance to get here it's a beautiful day it's a beautiful day it is it is but have there been any challenges in getting your licence back because we've heard like the brilliant side of it but has it come with its own challenges at all especially are you still on medication now you say yes still on still a medication now so that's not changed so this year I'll be three years season three in some senses I was surprised how how simply it was so even though I applied before the I was entitled to apply I think it was six weeks beforehand that I didn't want to sort of risk it just before the the 12 months take round and it still took from September through till the the December before I actually got the licence back and to get that back from the DVLA but I thought okay you're going to ask me to do some kind of extra test or my insurance is going to be sky high or whatever but so I've got a five year licence so whether that is part of it I don't know so it will have to be reviewed at some point but they seem to be fairly okay with it and it's working and plays called Grantham just north of Peterborough and Mike Mute was well over an hour and a half for a while and it's basically been cutting half because I was in trains and again it just it gives you time which I didn't have before and but one of the things I will say about how things had just trained it just to touch on a little family story the licence came through just before my if you sit for birthday and my daughter said well I can give you less than in my card ad and you can get an ours cover I didn't even know you could do that went out in the hair car and the back roads around our village and a lot of it was a bit like riding a bike and that was great and then she said well there's a B road up there I thought no I can't do that and it was like after 45 minutes it ended up like that's enough I've at least been through that process but to do that when my daughter just turned 23 so she's basically the same age was being given a driving lesson by my daughter that was a special moment for me and then after I had the year anniversary my three children they basically gave me the opportunity to do a lap at Silverstone where my dad had been working the pits in Formula 1 in the 1950s. That's so cool and you know so to go to a point where you you didn't leave your village to go to a point where you're driving to Silverstone to do a lap of a circuit and okay it was quite low speed and all the rest of it but to actually be able to do that is it's kind of and completes that kind of part of the journey. We're not jealous are we tall? I'm not jealous. I'm so cool. Do you love it Silverstone? I love it. So we talked a little bit around its experiences. Thank you so much for sharing it. It's just so interesting to know what it's a bit actually like. There's 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 still about a halfway through their 10-year plan aren't they at the moment. It's got a catchy little time I feel the intersectoral global action plan for epilepsy and other neurological conditions. It doesn't even abbreviate well to say. It doesn't. It doesn't. So we're about halfway through that. If I remember correctly it runs to 2031 to that 10-year plan and very much in terms of what we've already spoken about raising awareness, reducing stigma, reducing the amount of injuries and impact and death due to epilepsy, quality to services and finances and all the rest of it. And I do wonder, seeing quite a few things coming into the world of treatments in various forms be that maybe not so much medication a little bit that's been in the news recently. Perhaps might want to share a little bit about that. But things like technology, I'm a brain nerd. I am a bit of a technology geek as well. I love that we're starting to move forward and I do wonder whether it is the World Health Organization focus that is driving things. Of course, we spoke earlier about the reclassification of seizures as well. So what's going on in the world of treatments and new treatments, anything's on the horizon, tech wise, etc. I'll start with medication because there's much less to say about that as you've just said. We've got a few different generations of epilepsy medications, but some of the ones that we're still prescribing now, we've had for a hundred years and they're probably being slightly unfair, but broadly they're operating on the same kinds of mechanisms. They're all different and different drugs work for different people, but there hasn't been any massive innovations in medications for epilepsy in recent years. There are the early stages of inclinings of things that might be coming in. They've been some promising developments around personalised medicine and how you can sort of tailor how you can choose the right medications for people based on their genetics, what you can find out from their genome, which is really interesting. There's been some work on that around genetic epilepsies, so epilepsy syndromes have often come with epilepsy and lots of other conditions as well. So that's really positive, but like I say, it's the early days and there's a lot more to sort of happen there before it becomes a big new shiny thing wicking. we can talk a lot about, but for technology, there really has been a boom in all different kinds of applications of tech for people with epilepsy from using it in healthcare. There have been some kind of surgical developments as well, as well as things that people with epilepsy can use themselves and care providers can use in care settings. There's really interesting stuff out there. So I suppose there's from the point of view of people with epilepsy, there are things like wearable devices, so there are things you can wear that will a lot other people if it picks up that you're having a seizure. There are things that you can use at night, bed monitors and things like that that will alert other people if you're having a seizure during your sleep. There's apps on your phone where you can keep your seizure diary that will remind you to take your medication that will tell you when you've got your appointments that will do fancy things with AI to pull out themes between, you know, you've slept less on this night and the next day you've had a seizure, could that be, could there be a link there? There's some, yeah, really interesting stuff happening in that sector. And then there's, I mean, the use of AI, it feels like a cliche at this point to talk about AI, but it is being used more and more in healthcare as well. There's applications in, for example, reading EEGs, so part of the kind of diagnosis process for epilepsy is you will have a brain scan called in the EEG and AI seems to be very good at pulling out the bits of those scans that are seizures, so that doctors are only looking at the bits that are relevant to epilepsy. And then there's the useful like recording information. Yeah, there's all sorts going on in the tech world at the moment. It is really quite exciting. It is quite a session. It's some catching up on things like there's been a more advanced MRI scanner, so we've gone from an MRI three to an MRI seven. And even just when you look at the pictures side by side, just the detail that you can see that particularly with the focal epilepsy might be able to actually pinpoint things within the brain that they've not been able to see to get a better diagnosis and understanding. As I think that's really excitement. And some of the, like, say the surgical things that are coming through, I got super excited. I'm a vagus nerve geek. Well, there's a lot happening with VNS, absolutely. And just so exciting. And there's a lot of, we have this flurry of external vagus nerve stimulators in the health and well-being market. And they're all talking about epilepsy. It's like the races on who's going to get a license first. I mean, that's going to be a game changer as an atom. If you can see if VNS stimulation works for you without having to have the generator implanted in your chest and you know, detached to your vagus nerve. And I was also seen, there was a cart remember the long name for it. It's nicknamed easy. Have you seen that? I was like, wow, that's interesting. So you've got the generator under your chest wall. Have you seen it? Like you do with a vagus nerve stimulator. And then you've got the electrode that goes up the side of the neck. And then it's almost like little hexagonals linked together that's a little pad that sits between the scalp and the skull, delivering electric activity into part of the brain that you want to influence. So that was cool in itself. And I saw that they were going to use it for pain management and pockets, as I think, isn't it? Yeah. Yeah. So that was work up at Royal Victoria in Newcastle on time. But what was exciting was it looks as if the battery is recharged through the skin into the generator. And I'm just like thinking of like vagus nerve stimulators of the future not to have to have another operation to get your battery changed that will just charge inductively through the skin. Yeah. It's fascinating. Yeah. And just things that can be implanted, but they're less invasive. Like easy. It's under your scalp. It's not through your skull. So it's much quicker to do. It's much safer. It's easier to recover from. And then there's tech that's being developed. Like you say, that sits on the outside completely. That doesn't need surgery. That can stimulate the vagus nerve or there's kind of long term wearable EEG devices that don't need any surgery. They just sit on your head and take measurements. Did I see that one that looks like a spider? Yes. Yeah. I've got a little note on my laptop on a few other posted notes that says find the photograph and the spider. The spider on your head with a beanie on the shoulder. You were under a beanie. You don't even know it was there, but it's so such cool technology. So so interested. And I've been watching with interest. I don't know whether you guys have for about four or five years now with Elon Musk's neural ink. Man, that's phenomenal. I mean, the patients that currently got neural ink. So the neural ink is a BCI brain computer interface. So it sits in the skull with tiny, tiny, female filaments attached to individual brain cells, uploading information, downloading information into the brain. And the guys that have it implanted at the moment that are paraplegic and have ALS, moating your own disease, isn't it over here? Just life changing for those. But I'm it's in. So I've been watching it. There's got to be an application for this for epilepsy somewhere. And they finally announced it haven't they? And some of the latest updates that when neural ink goes bigger parts of the brain or full brain connections, then things like epilepsy and other neurological conditions are definitely in the sphere of being managed very, very differently. So I'm really excited about stuff like that. And they hold AI thing around that as well, Tom. Absolutely. It's a good time to be working in the epilepsy tech. Yes. So at one point, I don't know if you know the answers to this at one point, um, so deep. So no, no, no, it's back to death and epilepsy. And that's why some of the wearables are really great, aren't they? That we've seen in the UK right now. It's a shame. Some of them are very expensive. Maybe those prices are come down. Or maybe the NHS will be so kind. That's nice. That would be ideal. I'll put it out there. But in terms of a pseudo at one point on their website, it's probably two, three years ago, there was a wearable up near device that they were, it was like a prototype. It didn't look very pretty. It looked like this big box on somebody's neck. But I loved the concept of that. That if in that particular tonic clonics way, in that tonic seizures, when you've got that lot can't breathe because you're ribs of squeeze in your lungs, that it would catch that stopping of breathing to create an alarm to alert other people that somebody that, you know, the loved one is having a seizure. And it looked as if it was going to the next stage of clinical trial. And then it just seemed to disappear completely. So I don't know why that was. I just seen that. It's ringing a bell for me. I think I definitely, I can guess the researchers that were involved. I'm certain I've had conversations with them about it, but I haven't heard anything about it. Like you say in quite a while. Yeah, I look back on that because I'm following their website with interest because 21 people a week die from, so that's not expected death. And I've got 21 people a week. That's crazy. And so I'm following it, particularly from what, what are we doing about it? Technology wise to reduce those numbers. So I was super excited to see this thing appear. And then it just seems to have disappeared completely. I did see that in the world of sleep apnea, they've definitely gone forward with wearable devices. So maybe it'll come back in the future. And that's where I started to discover those new wearable devices around the top of the arm or the wrist that have come onto the market. So at least we're picking it up and running with it somewhere. So literally. And sort of in the, I guess it's maybe slightly less techy, but it's still tech. Su-deh-backed and do have a really good app for managing your risk of su-deh. So if you have epilepsy yourself or if you're caring for someone with epilepsy, you can use their app to assess what your risks are and then reduce those risks as well. So that's an app that, you know, we will always promote to people it's a really, really good tool to use. Amazing. Thank you for sharing that because that's really, it's important, isn't it? So 21 people a week and that's so devastating for those families that lose somebody in that way. And so talking about technology and treatments and things, people have plans really, really important for people with epilepsy. So I'm going to ask you, Jess, in terms of those epilepsy care plans. What's your experience of having, did you have enough involvement in your own treatment? care plans? In terms of a care plan, they didn't really seem to be much of a plan as such, other than the medication that I was obviously prescribed. And in terms of then coming back in six months time and we'll just review how it's going. And again, talking about certain vitamins made sort of help you and balance tires and all the rest of that. And those are obviously important thing to do in any stage of the lives that so it was kind of a bit sketchy in terms of what's been done today. I mean, I know the epilepsy society down at Chowfon are doing different things with personalized treatments. Didn't seem to have much of a plan and it's only really in this last few years that it's actually had some kind of structure, but it's still really been based around the medication. And it's just been a fortunate thing for me just to make sure that I take the medicine consistent times, don't miss doses. But one thing I will point out on that is I have had issues with the supply chain of an ethosuxamide. There was one occasion when the pharmacist had been given lots of notice that I was running low. And then as well what's happening here. And then they said, oh, we haven't been able to get hold of it. They hadn't contacted me and I literally got to the point, well, if I don't get it today, I've literally run out and you don't come this far, or only come this far. And I actually had to get the medication from a different town. So I've had that with ethosuxamide twice now. So that's one of those little worries. And it's also what a stress thing as well, because if you can't rely on your medications coming in, then that could potentially be a problem. And a side issue from that, which maybe issue for different people, really as opposed to myself, is that some medications they look different. So even my last medications I had, I had a 250 milligram of the same medication. And they were from different suppliers. And it may be completely fine. But what do I know? I'm not a pharmacist. I said, I'm used to my yellow tablet coming in. And then all of a sudden I'm being given a pink tablet that's a different color, a different shape. And what is this that you're giving me? And it's important to have that reassurance that it is the same thing. It's just a different manufacturer. That's really important because it is really confusing for people. And so I do get that unscary if you can't get your medication like you say you've come so far to not be able to access the meds that you need that then would set you right back to square one again. Yeah. Is is terrifying. Yeah. Tom, you're in shipping. For just to come in on that point, for some people with epilepsy as well, it's really important that they don't change brand. Like the same, the same medication made by different manufacturers can affect people differently. I know that's not the case for most conditions, but for epilepsy, depending on the medication and depending on the person, it can be really serious to have your drugs changed for a different brand. So keeping an eye on things like you've just mentioned, Jess, like, is it the same color? Is it the same size? Does the box look the same? And just double checking, am I actually okay to switch or do I need to wander that I've always had? Well, I will, I'm do a review with my epilepsy there soon. So I'll have a conversation about that because I don't seem to get any saying what actually happens in that situation. In that, if I search for my example, I was just glad that it came in because I was just worried that it was even going to run out completely. But they just seem to come in, oh, this week or this month, you're going to have this particular manufacturer and you don't know why that's the case, but that's actually my experience. And is it something that I should be saying, no, no, no, no, you should not be doing that. And should I be speaking to other people to make sure that that doesn't happen in future to make sure that they do have the right medication that comes in that is consistent? Absolutely. Not to sort of to a little plug for epilepsy action, but if you have a look at our leaflet called Don't Sub My Drug, that takes you through like which medications can and can't be switched and what do you need to ask your healthcare professionals? It's just a really short leaflet, but I think it's a really good resource to help people make sure they're sort of asking the right questions and getting the information they need. But like you say, in your situation where you've run out completely, something is definitely better than nothing. Yeah. Yeah, I know epilepsy medication, like you say, time is one of the exceptions. And most medicines, it doesn't matter, but for some reason, does it is a thing with epilepsy and to be able to challenge the prescribers, why are you changing my brand? It's epilepsy medication and it is one of the exceptions to the rule that I stay on the brand that I started on. So it's good to be able to put that out there because not everybody knows. And not all of the prescribers seem to know why. I think it was a decision that was made such a long time ago that not everybody's getting that message. So good to have those resources from epilepsy action as well. Talking to care plans, Tom, are we looking at care plans? Just what are there really great templates out there? What's gold standards? Because for some people, depending on their types of seizures, or may have more than one type of seizure and where people are not controlled, sometimes those care plans, particularly if they're being cared for in the care system are really, really important. And I do have to say, I'm thinking, good to see your prices because when we were looking for like, what is good template out there? What's heading for gold standard? I think the best that I saw we the epilepsy action care plan and the mediterranean care plan as well. And I quite often will say to somebody, you know, that combination of the two, if you've got somebody that is on rescue medication is, you know, it's a really good place to go to. So there you are. I'm begging you. Thank you. You're very welcome, praiseman, praise you, as a lot of resources out there, but that one's definitely one that I signpost a lot of the time. So last few questions for you in terms of looking after somebody, feel that allowing them to feel safe, supported in control of having their say in epilepsy, whether it's a formal care plan or whatever. What does, and I'll ask you both, what does good epilepsy care look like in practice? So, you know, so we're talking to care managers and people in the care industry. What should good practice looking after people look like for them? Think for me, like you've just mentioned, having a really solid care plan is number one on the list. You need a care plan that both goes through what to do in the moment of a seizure, but also what to do the whole rest of the time, making sure you've got good medication adherence and that you're tracking things that are happening. So keeping a seizure diary, keeping good records of what has been happening for that person kind of day to day, and also making sure that if you're looking after a person who has multiple different conditions, you're not looking at them on a condition by condition basis. You're looking at them as a whole individual because what might help with someone's epilepsy might harm their diabetes, for example, you know, you want to make sure that you're making decisions for a person rather than a condition. And the other thing I think that's really key is continuity of care, making sure that you've got people, particularly if you're in a kind of care setting, that you've got people that know that individual really well, that they know the history, that if you're going to appointments, the person that might be attending appointments with them knows what to say, they have the records, they have all the information they need to hand, and that the person with epilepsy can trust the people around them, that they're understood, that everybody knows what epilepsy is and how to manage it. And yeah, that you're just, I guess, trying to support in the best way you can. Yeah. Yeah. I mean, I just just to go back, I mean, I sort of mentioned about, oh, it's just taking time. I'd probably over simplified that. So just going back to the the the the veteran temperature epilepsy team who'd been working with me, the whole diary aspect of it, I did go through that whole process as well. They were very supportive in so many different ways, but there was that continuity of care that went through that and they were always so responsive because you know sometimes with some institutions you feel like I need to find out some information and it just feels like it can just drop into a black hole and you don't actually hear anything about but particularly with them they've always been so helpful for me so I always appreciate the team team there so they've been fantastic. -Raisy, thank you so much. So we've talked about a lot haven't we? If you're new there and everywhere with FLAXIS I like this. So I'm going to wrap us off I think it's been brilliant conversation. What key message would you like to leave listeners with? I'm going to come to you first Tom and then let just have the final word, well I get the final word don't tell us face it it's my fault, I'll have to say final guest word Tom what message you want to leave the listeners with? -I think epilepsy away and this is really key you just need to know a couple of key facts about epilepsy and then you'll be able to support everyone around you much better so that really is the bedrock. It finds out what the seizure first day looked like, what is epilepsy and then you set it for success. -Fabulous sound I'm going to come back to you after I've gone to jazz actually to tell people where they can go to and feel free to plug. I'm going to do it with that. Just to get the information then there's the support that they need that's really important that we signpost them a little bit as well. So yes what message do you want to leave listeners with? I think it's important to talk about it and I've never really been worried about just sharing my particular situation again possibly because it's been fairly mild and I know that there is that stigma that some people face but I think if people have that understanding that you're in that situation more often not you will find that they do actually want to help you and what you said about helping people understand early and making sure that it's known in schools. That is fantastic and what people are doing in the workplace there's people that are doing workplace training and I think that's important and I'd like to see that to be rolled out more but I will just say one thing for what perhaps the action to do is having a conversation with the team there and they're thinking big in terms of the awareness thing. I said why can't we talk about our message on the Champions League screen at Chelsea Football Club? Why can't we do that? And sometimes you say let's see how big we can make this message and make it as accessible and as understandable as possible but it's making sure that you have the conversations so people know that it's not just seizures as we've come to understand it in the past. People have all kinds of issues in all sorts of ways and it can you know make sure that they have that understanding. Yeah I would love to talk about you Tom. I would love for a celebrity who has epilepsy to come forward and just champion a really good awareness campaign that's on my wish list as well. It's absolutely on ours as well. The number of celebrities we've messaged you'd be surprised but it's our stigma as well people don't want to talk about it which is a real shame. It is such a shame such a shame so for the information support where do people go? So epilepsy.org.uk is the epilepsy action website we have a huge amount of information on there as well as support services for people with epilepsy and for carers and parents of people with epilepsy but we also do a lot of work with healthcare and social care professionals as well so anybody who's involved with epilepsy in any way can come to us. Look at our website, speak to our help line and get any kind of help and support you might need. Amazing and we'll make sure that we put those in the show notes and things for people as well in case they didn't have a pen we'll put it in the show notes so that they can go straight there. So I want to say thank you both so much. It's been such an interesting conversation. I've been fascinated listening to both sides of the coin and so I excited for our listeners to have absorbed all of that information and seen a professional on the personal side of things. So thank you so so much for investing some time to be with me today. It's been an absolute pleasure and hopefully some point in the future maybe we will do a ding ding round two. Thank you so much for having me. Thank you so much. Wow that was a really great conversation right? Insights and lots of really helpful information to support you and your team supporting clients with epilepsy both now and in the future. As promised he's how to connect with epilepsy action and epilepsy society and of course momentum people you can connect with epilepsy action at www.epilepsy.org.uk and the epilepsy society at epilepsysociety.org.uk. We'll put all the links in the podcast blurb so you can get to them easily. Lots of great information that you want to go and search on both of those websites. Remember to subscribe to the podcast momentum matters to get regular episodes and keep your inspired and up to date. Connect with us on Facebook, Instagram and LinkedIn and go to www.mementanpeople.co.uk to view the list of courses and products that we have available to keep your team current and compliant in all things meds and beyond. So thanks for being with us in the studio again today. I look forward to seeing you again soon. Bye for now.