Purple Day Special Episode 2/2: Nicole Bateman chats with Sally Brighton from Young Epilepsy

In this special edition of "Conversations with a SEND Mum," host Nicole Bateman is joined by Sally Brighton, the Fundraising Director of the charity Young Epilepsy. Together, they share important insights, personal stories, and practical tips to raise awareness about epilepsy and celebrate Purple Day.

Episode Highlights:

• Sally's Story: Sally bravely opens up about her journey with epilepsy, sharing her personal story of being diagnosed at the age of 34. She reflects on the challenges, misconceptions, and triumphs she has encountered along the way, offering hope and inspiration to listeners.
• 'Understand My Epilepsy' Campaign: Nicole and Sally delve into the 'Understand My Epilepsy' campaign launched by Young Epilepsy, aiming to increase awareness and understanding of epilepsy. They discuss the importance of education, empathy, and inclusivity in supporting individuals living with epilepsy and their families.
• Celebrating Purple Day: Purple Day is an international effort dedicated to increasing awareness about epilepsy worldwide. Nicole and Sally share exciting ideas and opportunities for everyone to get involved in Purple Day, from wearing purple to hosting fundraising events and sharing educational resources.

For resources discussed in this episode go to: Young Epilepsy | Homepage

Follow Nicole on www.instagram.com/conversationswithasendmum for exclusive peeks to weekly episodes. Please do send feedback and rate this podcast to help it reach those who would benefit.

Check out our Season 3 sponsor Rachel's 3 R's Subscription Box: Dedicated to helping SEND mums feel calmer and more relaxed by providing a box of products and online support for self-care. Follow on www.instagram.com/rachelsthreerssubscriptionbox and use the code NICOLE10 for 10% off your first order at https://rachel-s-three-r-s.subbly.me/

Check out our Season 1 and 2 sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

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Welcome to Conversations with a Send Mum podcast with me as your host, Nicole Bateman. Today for the special Purple Day episodes, I am joined with Sally Brighton, and she is the fundraising director at Young Epilepsy, which is a charity that really is trying Super passionate about raising that awareness of epilepsy and helping young people like my son to thrive. So Sally, welcome. we have got, so if you're listening on Spotify and on the podcast, we are wearing our purple t shirts, which is great for purple day. I've also got a purple balloon here. Because it's all, all things purple. So Sally, can you tell me, first of all, a little bit about you and your connections, multiple connections with epilepsy, please. Happy to. So I was diagnosed with epilepsy whilst I was pregnant with my second child when I was about 34 years old. And I had a seizure, tonic clonic seizure, which now I know all about, but at the time had no idea what it was. And as a result of lots of. Panicky scans and tests was diagnosed with, laughably, juvenile myoclonic epilepsy. And when you're 34, to know you've got a juvenile condition just made me laugh. It made me feel ever young. Yeah, juvenile. There we go. Yeah, absolutely. And then it was only after diagnosis when I was 34 that I then looked back on what had been happening to me as a teenager. To realise that yes, I had actually shown symptoms of myoclonic epilepsy when I was a teenager that had gone undiagnosed dismissed as me having strange twitches and tics and low blood pressure, all sorts of things it was put down to, never ever contemplated that it could have been a seizure or epilepsy related. And it wasn't until I had a witnessed tonic clonic seizure that we actually knew what was going on. So, yeah, and, So I happen to be working in the retail sector at the time. My life took me into the charity sector in terms of fundraising and marketing. And I've always worked in children's charities and health charities. And then suddenly I got approached that there was a job going at Young Epilepsy. And it was like, all my worlds had all come together. It was just amazing. It was like, yes, epilepsy, of course, I'm passionate about epilepsy. And although I was slightly in about it at the time. Love the thought of working with a children's charity and, and doing, you know, doing what I love for, for children's health and their rights and bringing my own lived experience to it as well. So joining Young Epilepsy in 2020, as it was was just a, yeah, the dream job really. And, and I love it and unbelieve it. I mean, not unbelievably, I guess it's probably understandably, I have now learned more about my epilepsy working in an epilepsy charity than I had ever learned before. And actually can now talk about it a lot more because I'm in a very safe environment where people understand what I'm saying and my lived experience is relevant. Whereas in previous employers I've kept, you know, you, you keep your epilepsy quite quiet because it's not something you want to share. And now I talk about it all the time, which is very healthy and has been liberating. And I have learned loads about my epilepsy, but also continuing to learn about how epilepsy affects young people. And the, the, the challenges they face as a result. Yeah, that's, that's amazing. I want to pick up on a few things from what you've just said. Firstly, so, you were saying that 34 was when the witnessed tonic clonic which for those listening, if you don't know the kind of terminology, they're, those are the type of seizures that you may think of when you think of seizures that are kind of, there's a bit of stiffness, but also the shaking, the clonic on the, on the floor. So what you usually see in films or TV is the tonic clonic ones. But your other, so the myoclonic, the twitches, the different things like that. were missed. So yeah. What do you see that a lot now in kind of the young people that you work with? What are some of those misconceptions that, that you see? I mean, I think actually, there are so many types of seizure that a lot of the types of seizure do go unnoticed and unrecognized because they're not that classic falling to the floor and jerking. So the, the myoclonic jerks I had were like just. twitches, like spasms and slight absences. I think the absence seizures are, for young people, especially difficult because it looks as if they're just daydreaming or, you know, not concentrating or falling asleep. And it's not, it's, it's a seizure that's taking over your, your mind, your brain, but not actually affecting your outward and, and I reflect on, on things that, you know, I've missed that, there were things that were discussed in the classroom sometimes that I just completely missed and thought, Oh, I must've been daydreaming. I must've wandered off my concentration. And of course, in hindsight, that was actually an absence. And I think for young people in classrooms, they really struggle with those less obvious seizures, because if you are suffering either myoclonic jerks or absences, or one of the myriad of other seizures that may just limit a part of the movement of your body or whatever. Teachers just think you're either messing about, making it up, not concentrating and you get punished and you get told off and you miss out and that's just so debilitating for young people and that's where we really need to improve understanding and awareness so that they don't go misdiagnosed. Yeah, absolutely. And having my son, for example, he has focal impaired awareness and focal awareness ones. So the focal awareness ones where he doesn't lose consciousness, his present either in a full collapse of legs where the, but then that's a bit more obvious, but one of the things he does is he just starts limping so one side of the body is impacted because it's And And first of all, I was like, Oh, you okay? Why are you just suddenly limping and in pain? And. A lot of the time, those, I've had to chat with school and say, this is, this is actually a type of seizure that he's having, like it will probably last about two minutes where he starts saying, ow, ow. I mean, I have no idea what's actually going on in his head, which as a parent, I, I'm like, oh, is it deja vu feelings? Is it all of those kinds of things? Yeah. Yeah. Yeah. He just starts limping and there's been a lot of times where I've had to kind of explain. This isn't just him messing around or, you know, things like that. Just, just it is, is a type of seizure and the, yeah, I think there's a lot of, I wouldn't have known that I didn't at the start when he first kind of started just suddenly limping, I was like, what, what's this? But it's really important and, and something that. I love that you at Young Epilepsy do is your Understand My Epilepsy campaign and there's an amazing video that I'll put a link to in the show notes that made me cry because there was this one boy in there, I mean all of them, but especially one boy who had I think absent seizures like you were talking about. Yeah. And. He ended up being excluded, not being able to go to school and getting told off for misbehaving and all, it just broke my heart, like. Yeah. Yeah. He's, he's a wonderful little boy and he's having to be homeschooled because he was, yeah, he was getting punished for his absence seizures. He was being told he was daydreaming and not concentrating. He was told off when he missed his homework deadlines and he was struggling with so much and he's the most lovely, gorgeous boy. He's not, you know, he's growing up now. He's not as we've known him for a couple of years now, but he's, his story is terrible, but his story is not uncommon. And that's. That's what we're trying to raise awareness of is that, especially in the classroom, but in any social setting, in any, any childhood setting, we want people to understand that Every type of epilepsy is different. And the epilepsy affects people in different ways and you've got to understand it first and then put, put things in place to support it. And it, and understanding is everything, you know, if you know what's happening to that individual, you can do all sorts of things to support them. But if you don't understand, if you have misconceptions, if you have prejudices and stigma attached to the condition, then you're never going to get there. The support put in place and young people are missing out. They're being excluded. They're, they're, they're lonely. They're isolated because the world isn't, isn't understanding what's going on. Yeah, absolutely. And it's, and it's great that you now are in a workplace, for example, that is obviously very accepting, very understanding. When you were just flipping back to kind of what you said at the beginning, when you were in the other workplaces, Why, what kind of made you feel like you didn't want to share your epilepsy diagnosis? Because I know that's quite common with people. Yeah, it is very common and it's because of the stigma. Yeah. There's first of all, there's the embarrassment around seizures. Having a seizure where you lose control and you fall to the floor and you jerk and you wake up and you have no idea what's going on. That's embarrassing and you don't really want people to see you doing that. You don't want to even think about that happening. So you try to sort of push that to one side and don't go there because of the embarrassment factor. But equally, when you say to people that you have epilepsy, they immediately think you're going to be having seizures all the time, that you're going to be having the tonic clonic, the twitches. And you can almost see people take a step back and say, Oh, okay, you're, you're a bit weird. You're a bit odd. You're a bit different. You're a bit scary. And I think it panics people because watching a seizure is very scary. And I think people don't know what to do, they don't understand what's going on. So they just avoid it and they kind of step away from it and they don't want to talk about it. And then there's the sort of the wider implications that people think, well, if you have epilepsy, they think of it as, as a, you know, it is, it's a condition, it's a disability. It can come on a spectrum of levels of disability, but they suddenly think, Oh, that, that means you won't be able to go near a flashing light. You can't sit at a screen you won't be able to drive a car. Yeah, you're not going to be a great employee, we're going to have to probably just, you know, pass you over and move on. And because it's a sort of an invisible disability, people can discriminate against it. And that, that is, you know, if I was in a wheelchair, there would be a huge amount of support put around, you know, by law, they would be. needing to, you know, I'd be discussing with them what they were going to do to make, make my work accessible. With epilepsy, it's hidden. It's not talked about, it's stigmatized. And therefore there are ways that employers can, can avoid taking on the responsibilities that they need to. Luckily, my seizures have always been really well controlled. I'm on a great, you know, drug and, as long as I behave properly and don't do silly things in my social life and, and, and don't get too stressed and all the rest of it, then, you know, and get enough sleep, I can be seizure free for years and years and years. But for other people that their drugs might not control their seizures as well. But that doesn't mean to say you can't do a job. It doesn't mean to say you can't function as a human being. You can do everything else that anybody else can. You just need people to understand that, you might have a seizure and if you have a seizure, this is what they need to do. And, and you might need to have a lie in every now and then because you're tired and you need to catch up with sleep and have a bit of flexibility around your working day and things like that. And, and those. Adaptations are the same in school as well with young kids, you know, they need to know that they can say to their teacher, I'm not great at nine o'clock in the morning. But I'm, I'm better at sort of 11 o'clock in the morning and I can't sit and do an exam for three hours and concentrate. No, but if you break it down into chunks, I can, you know, these sorts of things which are perfectly acceptable. Yeah, but you just need to have a tolerant and understanding teacher or in my case employer. But yeah, we, we, I think lots of adults with epilepsy just don't talk about it because they're afraid of the reaction it's going to get. Yeah, yeah, absolutely. Lots of, yeah, interesting points. So if you're listening and you are an employer, then think about also, making adaptations or if you work in a school, it is, it literally is about your campaign. Understand why epilepsy is so key because there's so many different seizure types, so many different impacts. Like you said, some are well controlled with medication. I think. a stat that I found where this is, 70 percent are well controlled with seizures, 30 percent not. So it really does depend. And for some it's that constant activity in the brain, even when it's not seizures, whereas for some it's that activity in the brain. When it, when they have seizures. So it's, it really depends on that person, that type of epilepsy, how it impacts them. My son, we know that it impacts his cognition, learning, memory, focus, attention, because it's that constant background thing. So he's amazing. Like he does amazing. He does so well. Like he's so resilient because even this last week he's had like three seizures and he just kind of. Yes, it does impact him and it drains him. And you can see, like, there must be something there, headaches, all of those different things. But, he's, he's the most enthusiastic boy. he doesn't let that. stop him. Yes, it does impact him, but he can, he can still with adaptations, especially understanding, like you said, sleep, I think is, is really, really key for him. And like you said, for you anxiety and lessening that. And I think schools. have a big role to play in, in ensuring that there are things put in place to lessen anxiety because schools, I know as working in schools for 11 years tests, all of those things can cause a lot of anxiety. So it's understanding the triggers as well for them. Yeah, absolutely. And, and I think, you know, It is, it is understanding that actually epilepsy isn't just about the seizures. You know, the seizures is how we know something's going on, but the impact of those of epilepsy on, on so many other elements of a, of a child's life and, and an adult's life. And I think that's, that's the bit that perhaps teachers don't really understand is, is that they might say, oh yes, you've got this disability, you've got the epilepsy. That means you might have a seizure and I need to do X, Y, and z. If you have a seizure and then they stop there. What they don't understand is, ah, that means your memory could be a bit dodgy, or that means you might not be able to concentrate, that might, they don't think about the fact that it will impact behavior, learning, mental health, and, and what we're trying to help teachers is, is through, through offering training programs and resources for the classroom and resources for teachers is to say, yes, it will, there's a, there's a whole sort of ecosystem of things that are going on here. The seizures are just one part of that, and you need to understand how it all works. impacts on each other and, and understand that in the classroom because yeah, I think just focusing on the seizures is missing the point that obviously you need to worry about the seizures because that's the sort of the obvious and dangerous piece, but it's everything else that's going on with it. And having an epileptic brain as I have, I know that, you know, my short term memory is a bit rubbish. I have to write everything down. I know that I forget faces. I, really struggled to recognize faces. So people will come up to me that I've already met and I'll say, who are you? So that, you know, there's all these other things that are going on because of the way my brain's wired and for young people in school. That really needs to be appreciated because, you've got to, you've got to see the whole person, you've got to see the whole thing that's going on. Yeah, absolutely. And, I think that's such an important point that all of us need to remember, when we're meeting people and in any, any condition, anything like that is understanding their specific things, how it impacts them. Generally, as a whole, because I think that's what, like you said, is missing sometimes. And, and that's why I'm like, yes, that's why I love the Young Epilepsy campaign, literally, because it's just that looking at the whole person, thinking about how this impacts them as a whole and things like that. So so yeah, thank you for doing that campaign. It's really important. Well, I mean, it's so needed and, and what we're, we're trying to obviously. inform and educate people, but we also want young people to be able to have that voice to tell people what they need and be listened to. Because all too often a teacher will, or not I say teacher, any adult, anybody working with that young person, even, you know, friends and their own sort of social group will say, ah, I know, I know what you need. I know what your problem is. And it's like, no, you don't listen to me. I'll tell you what I need and what my problem is. And we've had heartbreaking stories of. For example, young, a young, a mum wrote to us actually, a mother wrote to us, whose daughter had just finished primary school and they'd got to the end of term, the year six celebration where they have this big party and off they go. And because her daughter had epilepsy, they said, look, we're having a a show and some disco and lights, and there's going to be flashing lights. So your daughter will need to stay at And she wasn't allowed to go to the end of year assembly. Even though her epilepsy was not photosensitive. That I would be so angry. These moments in life only happen once, and as a parent and as a child, they're so important. Our hearts broke for this poor mother and for her daughter, who were denied that really important milestone in life because of prejudice and assumption, not based on any fact. If they had asked them, look, we're doing this end of term show, what would you do? a is there going to be any problem with that or b how can we adapt it so that your daughter can come to the show yeah but they didn't even have the conversation it was just a blanket ban and that's happening a lot yeah it's i've heard another story similar to that as well and it's, oh, it's heartbreaking because it's also, it's so discriminatory. And isn't it something like only 3 percent of people with epilepsy actually have photosensitive epilepsy? It's a really tiny percentage, you know, it's a, it's a type of epilepsy, but I think because it's on the television, you know, whenever there's anything on television, you know, flashing light warning, I think it's heightened the awareness of photosensitive epilepsy. But because we're not talking about all the other epilepsies, people think that's the only epilepsy, and it's, it's not, and you're right. A tiny percentage are affected by flashing lights, and it's only a certain type of strobe effect, certain, you know, vibration of lights. And yeah, it's, it's used as a bit of an excuse to exclude people with epilepsy. I've heard of people not going to their end of, end of year, school prom. And in fact, something really cutting, we, we, in our survey, we asked about we did a survey of people's experience in school. And a young person came back and said they weren't allowed to go to their end of year prom because of the flashing lights, even though they didn't have photosynthesis. Yeah. And she said, had I been in a wheelchair, they would have put in a ramp. But because I have epilepsy, I was just told not to come. Ah, yeah. Yeah, I just it just makes me, just makes me really angry and sad because you want your child to be able to access everything that other children can. And yes, there are specific things, like if my son continues to have uncontrolled seizures, he won't be able to drive because of safety and things like that. But if it's controlled, then there's, there's things like that. But a lot of these things, they can make one change. They could have a conversation. They could. Let's say if someone did have photosensitive epilepsy and a disco was having strobe lighting, for me, I'm like, weighing that up, just don't use a strobe lights. If this child did have, you know, I'm like, surely child over lights. Like what is, for me, it's a very simple choice, but yeah. And teachers, aren't getting up in the morning to be you know, discriminating against children with epilepsy. It comes from a place of sort of ignorance and fear in that they are so worried about the seizures and so overprotective of the child. So it kind of, it does come from a good place. You know, these are busy teachers with lots of children to look after. Safeguarding and wellbeing is paramount. They're certainly, Trying to do the right thing. Yeah. But because they lack the understanding. Yeah.'cause they haven't had the training.'cause they're not having the right conversations with the family and the child. They're making the wrong decisions or they're not making enough decisions. And I think, I think all we we're not beating up teachers here. No. We're not saying, oh, teachers, you're monsters.'cause clearly they're not. They're wonderful and, and they are the, the key to children thriving. We wanna help teachers, you know Yeah. Give them the resources and the information they need. So that they can get it right, and they want to do it, but they're busy and they don't know where to go. So the Understand My Epilepsy campaign is about raising the awareness of the need that teachers must understand what's going on, talk to the young people about what they need, but absolutely giving them the resources and the support so that they can get it right. And every child should have an individual health care plan if they have epilepsy. And we know that teachers might struggle to know where to start. Well, we've got resources. We've got a template plan. We can help, you know, help you understand how to write it, what it should contain. So we're not asking teachers to do anything beyond their capacity. We just want to help them. And we're not beating them up. We're saying, we know it's hard. We know it's misunderstood. This is how we can help you. Yeah. And that's great. There's a proactive approach that you take to try and equip people with skills and knowledge and understanding. And that's great. Isn't it? Because we don't know what we don't know and, but we can then learn to understand. And, and that's where your resources come in really, really helpful, which is, which is great. And they're based on really good research. We're not just guessing what, what young people need. We've done you know, part of what young epilepsy does is we have a research program. And some years ago we, we did a couple of pieces of research around one was called the WINS research, which stands for what I need in school. And it was research to look into how. epilepsy affected learning and behavior. So that's all very well researched. And then we did a piece of work in Surrey and Sussex looking at the experience of children in schools in those counties. And again, it was highlighting how epilepsy impacted every aspect of learning and development and behaviors in young children. So Based on that really sound research, we've developed practical resources to help. And so we know it's a problem that can be solved. And, and we're actually now doing some further research to, to evidence how the, how the problem does, does get solved. So we're going to be taking, through various training programs that we have, and then looking at the impact of that on, on what happens in the classroom, because we want to evidence that this is the right thing to do. Because we know the need is there. We know what the problems are now. We just need to evidence the, the, program that we're putting people through, but we absolutely know it's, it's going to work and want to give teachers that confidence that they can do this. Yeah, excellent. That's, you know, that's great. Where can if anyone's listening from a school or anything like that, where can they find this program? So it's all on our website. So if they go to youngepilepsy. org. uk, when you go in there, there's a section that's for professionals at the top of the the homepage, click on that and it will say, you know, if you're a teacher or an education professional, it will take you through to picking up on the online learning. And you can also download our. guide for schools, which is also a very useful resource. Excellent. And you have resources and support for parents as well, don't you, on your website? Yes, there's a guide for parents. And there's also loads of information all over the website to help families and young people. And then for young people themselves. We have the channel and we have lots of information for young people, written by and with young people so that they can, they can get the, the information they, they need. And often young people, they really need that peer to peer support. And sometimes they want to ask questions. They don't want to ask their parents, but they'd rather ask their mates. So we're trying to help, you know, really build that community for young people to to talk to each other. Know that there's someone that understands what they're going through and then can talk about the things that maybe they wouldn't want to talk about with their nurse, their teacher, or even their parents. Yeah, that's great. Definitely go to the Younger Epilepsy website and have a look at that. So for those listening, it's purple day. What can they do? What's one thing that you'd be like, right, do this or share this today so that we can help spread. Epilepsy awareness and break some of those stigmas. Yeah, I think Purple Day is, it's, exactly that. It's about saying, let's all talk about epilepsy. Let's, let's bust some myths. Let's take away the stigma. It's okay to talk about it. And if you have epilepsy, be loud and proud about it. Tell people you've got it and explain to people how it affects you. And we've got, I mean, I think the great thing about Purple Day is it's, a celebration. It's a day of awareness. It's about in, being really open and honest about epilepsy, but in a joyful way, in a fun way. We have loads of fundraising ideas on the website and through our social media. If you're following us on, on any of our social media channels, there's all these things you could do, whether you want to wear purple, dress up purple. Yep. Each purple, blow up purple balloons you know, whatever you wanna do. Just to, just to show your, your support for people with epilepsy. And anybody with epilepsy will see the world turning purple on Tuesday. Yeah. And it just gives them that reassurance to think Yeah, I'm not alone. People do get it and they wanna help. Yeah. So yeah. Anything, anything Purple. Luckily for me, it's my favorite color. Yeah. I've Great. So purple. But we we're having so we've encouraged people to do purple bake sales. Yeah. We've got purple tattoos and transfers and yeah, you name it. Purple bunting will be going up and and, and at the moment we've, we've got a lovely fundraising challenge going on where we've asked people to walk 26 day, 26 miles in 26 days. And that's been incredible. We've had. entire families deciding to walk a mile a day for 26 days and it all finishes on Tuesday. So they'll all be completely exhausted. But they've done a great job fundraising and awareness raising by doing that. And it's raised lots and lots of money for us. So we are delighted. So yeah. Anything goes on Purple Day, as long as it's got something purple in it. We've got a purple Spotify playlist that you can, you can donate two pounds and get your, your record on, on the Spotify playlist. And and that's proving very popular and quite interesting how obscure some people's music tastes are. Anything goes, that's fine. Yeah, we're all individuals, so we have our preferences. Yeah. And what I'm going to enjoy later, my, one of our purple day traditions of going to the supermarket, getting all of the things that are purple with my kids. So me and my husband and my two kids, we go, we get all the purple things. We put them in our basket or trolley sometimes because we get a lot. And then we go home, we enjoy our purple tea with balloons, with you know, wearing our purple epilepsy awareness t shirts and eating our purple things. So I love that. I think that's a lovely thing to do. And I bet that's really good fun actually going around the supermarket and finding all the things that are purple. And I'm just really glad that quite a lot of chocolate is wrapped in purple as well. So that suits me. Yeah. And me as well. They love it. The kids love it. Cause it's like the free for all. They're like, Ooh, that's purple. Like they, you know, he's giving them that choice. Love it. So yeah, they're very excited for purple. Brilliant. Take a photo of the trolley so we can share that on your social. I will. I definitely will. And yeah, thank you so much, Sally, for talking to me and everyone listening in the show notes. I can put some, I'll put some links in there. So you can go to the epilepsy website and follow them on socials as well. So yeah, have a lovely, happy purple day. Thank you, Nicole. It's been lovely. What a privilege to be here and yeah, you're doing great stuff too. And yeah, together we will understand epilepsy and we will make sure every child can thrive. Absolutely. Great, great message to end on. Thank you. Thank you.