I go with my mum [to the clinic]. ‘Cos she knows the medical side.

So do you feel like the doctors talk to you or talks to your parent?

They talk to me sometimes, they do talk to my mum a lot which actually I don’t mind. I really don’t mind. Nowadays I actually want mum to be there because of the medical side, and which is another thing I know I’m gonna have to know when I get older ‘cos they can’t come with me to the hospital for ever. But at the moment I’m happy with her coming you know she is, she tells them everything. Like they ask, talk to her about the medical side, and then they talk to me about me, myself and my feelings and what’s been happening with me. It’s kind of like two things for one you know they, as it were.

Yeah. Do you think they take into consideration you as a whole person like you said, that they actually ask about your feelings and how you are’?

Yes, yes. Sometimes it can be like, ‘Hello I’m here,’ but you know sometimes, a lot of the time it is like I’m glad she’s there you know ‘cos I don’t know the medical side of it.

Yeah, and I think they say it’s good to have somebody who sees you have seizures, because they might be able to describe it better.

That’s exactly the point that mum’s seen it and she knows. That is another thing about when I was saying that I feel bad, you know, I feel that I should really know the names of them and the dosage, but I just don’t and they talk to mum. But I don’t mind that, I’m actually quite glad when she’s there, but I don’t feel bad. Like I do with the driving thing, when I can’t help mum and dad there, I can’t really help mum at the moment with the medical side of the epilepsy ‘cos I don’t know the tablets names, or the dosage or whatever.

Could’ve been better [her health care], because I wasn’t given information. I had to find it out myself. And while that hasn’t disadvantaged me, it shouldn’t be like that, your doctor should tell you. I know that I could go and ask my doctor, if I wanted to know something, but if you don’t know that there’s something there how do you know to ask. Many people would not you know they wouldn’t have a clue about their epilepsy if they’d had the same like medical care as I had. So, from my point of view it’s not a problem but for other, I thought, I actually thought it was quite poor.

You would’ve wanted more information?

More information, I mean like when I went to see the neurologist after when I was in the hospital. I remember the appointment lasted about ten minutes and ten minutes when you’re telling a 19-year-old-girl that she’s got a chronic condition that is potentially life threatening and is gonna persist for you know for pretty much most of her life, that’s not long enough, at all. I mean I didn’t know what to ask the neurologist. I’d no idea because I was just, ‘I’m epileptic, Oh gosh. So, that it wasn’t, it wasn’t a good standard of care, I don’t think.

Have you seen an epilepsy nurse or just a neurologist?

Neurologist. My GP though, my Gps surgery has been very good because I have a review every now and again and I think when the computer tells them I have to have a review and they ask me loads of questions. They’re very helpful with it actually, they’re much more helpful than the actual neurologist’s clinic. So yeah, that’s quite useful, quite like having those. ‘Cos even though nothing changed, it’s just good to like reflect on it and just think about it, so you know, yeah I quite like that.

Do you find that with the GP they get to know you as well?

Yeah, I knew my GP at home, definitely. I mean when I was first diagnosed we actually deliberately made an appointment to see my family GP because even though normally you don’t get to see her because she’s so busy, you just end up with you know whoever’s in that day. But we actually deliberately made an appointment because, because we know her, she knows me, and she knows what I’m like, she knows what like level of information to give, so we did do that. With my GP here, they don’t know me ‘cos I’ve only been with them here two year, so they don’t really know me. I only really go when I need a prescription and stuff so it’s not like that, seeing someone who knew me definitely helped.

I suppose always thinking about the person, because you know with people, they get them files, that’s the only one problem I ever had with the medical system, doctors get these files and think, ‘I know this person’ ‘cos they’ve got my file. I’m not kidding you my file is this thick, okay, and that’s only 6 years old you know, think about it. I mean it’s good, they’ve got this great big file, ‘I’ve read all the stuff that’s happened to this person, ergo I know this person, I know how much medication they’ve had at this stage, I know this that and the other’ and what they’ve really done is they’ve spent, you know, they’ve spent five, ten minutes before the consultation, or longer, if it’s a particularly important one. And they’ve perhaps read it through thoroughly, maybe they’ve just glanced over all the headers and the footnotes and stuff, but you know they think they know people. But I think perhaps taking into account the fact that they’re not just the folder, it’s the most important thing and you know.

Yes the consultation, yes the condition might affect someone in some way, but they might not, they might just be I dunno, okay about it so. And like if I can go back to the guy saying, he didn’t just say that’s some actual, you’ve just reminded me actually, he didn’t say, ‘You’ve got a 3% chance of dying from this,’ he said, ‘You’ve got a 3% chance of this bursting and causing, you know, of like being, of dying from this. Then he said, ‘So if you can imagine that we have a hundred of you, and three of them die every year,’ he said that to me. Okay to me, that’s okay that’s a bit harsh but I’m gonna let that pass man ‘cos I’m pretty thick skinned, but that really, really annoyed my parents. I mean can you imagine if you, I don’t mean to be you know be sexist but I mean you can imagine if it was like a 15-year-old -lass, perhaps a bit more emotionally vulnerable, perhaps not comfortable with this, worried about how it’s gonna affect her future, he just said, ‘Three of you die. I mean what kind of thing is that to say. But anyway yes, to think about the person you’re talking to before you say anything really, is to say.

Then it got worse, I had a consultant who was giving me tablets and keeping me on the same tablets even though they obviously weren’t working and each time I’d go to see the consultant he pretty much fobbed me off. Give me some doctor talk and fobbed me off for the next three or six months. That carried on for about, probably about four years, five years and we fought. Obviously it was getting worse, getting to the point about on average once every two weeks and we fought quite hard to try and get a good consultant, a good doctor who was actually gonna look out for my needs. More than anything as well as trying to sort it out as to what was causing it, it’s still not under control. It was originally said by this previous consultant that it was probably adolescent and it would clear up, even though it was getting worse. But when we finally went to see the good consultant he started to take more care about me, speaking to me about my social life, helping me out putting me with epilepsy nurses that I could talk to. And I was a bit more reassured once that kicked off.

Do you usually see the same consultant and the same nurse?

It is not always the same nurse which can be quite confusing sometimes. But if you know the name of your nurse that is always handy, because you can always ask for them. A change in doctors, nurses I would advice not to do really. I have found it very difficult sometimes, one nurse will say one thing and another nurse will say another. They won’t all agree, and they won’t all know what the other one has, why the other one has suggested something. Quite recently I went to a doctor and they’d described the type of epilepsy I had and I didn’t have a clue what he was on about. I suppose it was another term he’d used for my type of seizures, but I had never heard it before and it can be quite difficult sometimes.

Sometimes you have got to speak out, that’s a big thing as well. If you just sit sometimes and listen I think you are sort of used to going to the doctors if you have got a flu or the cold but if you have got epilepsy you need to speak out and sometimes say, ‘Well I am feeling this. And you need to ask the questions, you can’t just expect the doctor to know what is going on, you need to talk, because it is quite an individual thing and it does change. It changes from one person to another and then over time as well. When I go next time things might change again and it is important to you know to illustrate that, so that they can keep up with it.

Absolutely. Do you find it easy to explain to them and ask them questions, is it easy for you?

It is now. It wasn’t easy then. When I was younger, it was very difficult. I would just take whatever medication they gave me [laughs]. If they gave it and I would take it, but now I will ask, and if they give me a blood test, I will ask you know why you know, at this particular time. Sometimes they are quite routine but not always, and certain tests sometimes you’ll ask. You do tend to ask more questions as of now. I don’t know if it is because I am older or feel more confident but it is good to ask the questions. Sometimes you might just get a simple answer but sometimes it can really help you understand a bit more.

Harry’ When I went to the epilepsy clinic, that made me ten times more aware and ten times more scared as well. ‘Cos they brought prospects of operations in and like risks of that, and which scared me a lot. I found more about sort of side effects of tablets, which made me more paranoid about the side effects, which brought the side effects on more. Which was annoying, I wish they’d never shown me some of the stuff that they showed me, yeah. And also I’d never seen myself have a fit before and they showed me a video of myself having a fit, and that upset me quite a bit. And I hadn’t like cried in years, but when I saw that I was really crying.

So you were saying that the information that they were giving you about the risks and things like that, you’d actually would have chosen not to know?

Harry’ No, but, I came all in one big’

Mum’ It was a learning curve for you really wasn’t it?

Harry’ It was more than that, it was more than a learning curve, I think it was too much really. ‘Cos they told you about the million to one side effects, but they didn’t say like that million to one thing is still a scary thought in your head when you’re trying to sleep at night.

Mum’ Some of it was quite brutal wasn’t it? For all of us, we came home and…

Harry’ Yeah there was one doctor told me of how I could die and stuff.

Mum’ Yeah, he was very brutal.

Harry’ He was actually very, I think he was worried about himself, more than upsetting me, and he sent me off to my room scared to death.

Mum’ And he sent us home the same way.

Harry’ He sent my parents home saying, with the thought that I could die. So I could easily, what did he say, he said’

Mum’ Oh it was terrible really. I think he just completely gave us all the negative issues, without the odds of it and I don’t know whether it’s a legal requirement covering themselves or what it was, but I nearly collapsed when I got home to be honest, and we’d had to leave him there. They tell you all this and then you’re 100 miles away.

Harry’ I was scared.

Mum’ That was one of the lowest points ever I think.

Harry’ Yeah, my consultant is very good now. He’s a nice guy, he’s reassuring, he’s realistic as well.

Mum’ And you feel confident, we feel all confident.

Harry’ I can trust him and I feel confident about what he says and I take his advice any day. I’ve always actually been like that ‘cos, there’s quite a few people who sometimes think they know better than their doctor, but I don’t, I do what the doctor says within reason really.

Mum’ He’s been the best overall I think.

Harry’ Yeah, my doctor, my consultant now, he is a very good, very good doctor. He’s actually changed my life really.

What do you mean?

Mum’ Yeah, he has, he’s the only one.

Harry’ He’s well, He’s stopped me having seizures really at the moment and I’ve gone to him and asked him questions. I remember one time I wanted to ask him about a personal question, and I asked is it okay if my parents aren’t there, he just said ‘right out’ and he just told my parents.

Mum’ He’s been great.

Harry’ Told my parents to go, like I’m sorry you’ve got to go, and I need to talk to him on my own.

Mum’ Yeah, and then he sent you out.

Harry’ Yeah, and then he sent me out to talk to my parents. But he’s a nice guy. I think it’s he, cos unlike all, most doctors just put, I think they put you on a drug and they don’t think hang on a sec, what’s this gonna do to this guy, what’s this gonna prevent him doing, what’s this gonna be like on his school work, but my doctor he, you know like’

Mum’ He’s always (willing) to help.

Harry’ He’s willing to wait you know, like till after my exams to. I’m gonna come off one of my drugs and unlike the doctors whod say right I’m gonna do this, and he’d go, he said, like ‘when do you want to do it?’ And he’s asked me the questions and he’s asked me what I want to do. And I think there’s not enough out there who do ask those kind of questions.

Mum’ But also he’s explained everything hasn’t he?

Harry’ He’s also said to me and like that he’s, ‘cos he looks at me as a basically a young lad who wants to go out and enjoy himself, and he understands that.

I’ve got loads of questions in my head to ask them, but when I see them and ask them they don’t really give me straightforward answers. So I don’t really know what kind of epilepsy I’ve got and I don’t really know much about the epilepsy I’ve got really. To be honest I ask them questions and they all say different things.

Do you see different people?

Yeah. There’s never really the same person, so you can’t really get comfortable with the doctor. Sometimes if I go to see a doctor I need to get to know them and see them more than once before I start asking them questions. But you just get random doctors, that you don’t really know or haven’t seen before so you. I don’t like to ask them things, or talk to them about it because I feel like they don’t know me.

And who do you see? Is it a neurologist or your GP, or who do you see?

I’ve seen a neurologist in the hospital once, and then I saw a nurse, but if I just need to get a prescription for my tablets down the doctors I go down there. But then there’s always someone different, but they don’t ask you anything, how you’re doing with it, or anything, they just give you a prescription [laughs] and then you leave.

And that’s it?

Yeah. That’s it.

And you would have lots of questions to ask them?

Yeah, kind of. I have questions, but then I don’t ask them because I don’t know them, because it’s always someone different. And if you want to see the same doctor you can’t. You’ve just got to have basically whoever’s there.

I remember waking up, and sort of like they had me in a neck brace, thankfully I hadn’t broke a bone in my body, I was absolutely fine. They had they had me in a neck brace but the doctor came along and checked my neck and sort of like felt down my back. I was a bit sore and achy, but I was absolutely fine. I saw all these x-rays of me, oh look. And [laughs] I remember the nurse sort of like saying, right, you know I was waking up, I was sat up now, and I was like oh you know feeling a bit dizzy and stuff and I had all these lines going in my arms, and she was describing like which ones were which. I remember looking at my arms and I’ve still got like marks and stuff on my arms from where I had needles inserted, I had like five on one arm, three on the other. ‘What are all these for?’ I remember having, like waking up, and having loads of bruises on my arms and what the nurse was saying was that what had happened was they were trying to get lines into me while I was fitting so that’s why my arm was bruised quite badly. I had like one that came from there to there, it was really ridiculous. But yeah, you can understand that. I remember waking up and I was like oh, she says, ‘Oh, I need to take this out,’ and she lifted up this catheter bag, and I was like, ‘Oh no. I’ve got a wee bag,’ [laughs]. It was just like, ‘Oh God. It was just all a bit of a strange experience.

I remember the worst thing was, is that when I was out that night, I sort of like you know, I’d dressed myself up ‘cos I’d been feeling a bit rotten so I had on like my best clothes, and I had on this jacket that I absolutely adored. It was like a beautiful red leather, dead expensive jacket, and it was really cool, people used to ask me where it was from. It was like, the nurse was going through my things, like all my things were sort of like packed in a bag, and they’d cut my clothes off me in A&E, and she just picked up this shred of a jacket with all the stuffing hanging out and just like I remember you know the worst thing about waking up in ICU ‘cos I was absolutely fine, there was nothing really wrong with me’

Yeah so I remember the worst thing about waking up in ICU was that you know I was fine, and you know I’d not broken any bones thank god or you know anything like that and you know I just felt rubbish. I remember trying to sit up and I was like, ‘I’m fine now, I can sit up and the nurse going, ‘Whoa, hang on a second’ And I was just went, ‘Oh my God. And she was like, ‘See, trying to do too much too soon. ‘cos I was absolutely fine and then you know the nurse was going through my things, and she showed me my jacket and I just burst into tears, I was like, it was the worst thing about it. ‘Cos I just really loved these clothes, and I just thought, why did they’ And there’s another embarrassing thing ‘cos my knickers were missing, I thought so where have they gone? [laughs] And they’d cut my bra up and you know it was just like, it was kind of embarrassing ‘cos you’re thinking, ‘Oh, God, you know I was you know zonked out. Oh my goodness. So you just think oh all these things were done to you while you were asleep.

When you said you’d been in hospital a lot, what are your experiences of hospital, ward treatment?

Uhm, sometimes a lot better than others. There was one time when the doctor refused to see me at all, because he said I was faking it so he refused to see me at all. That was a couple of months ago.

What happened?

He discharged me. Had another one on the way home, so again he refused to see me when I got taken back, discharged again, and then I eventually got an appointment to see the consultant, said it was epilepsy. So then I saw the epilepsy nurse.

And what about other bad experiences in hospital?

Well after I’ve had a fit, came round, one of the times a nurse was holding me down saying, ‘Stop doing that. Can’t remember a lot about that.

What about good experiences?

At times they’ve really looked after me. Made sure I’m okay and everything, one of the nurses even came and sat with me and then talked to me for about half an hour, she had a long chat with me about college.

When I had a three bout seizure I went into hospital for four days and I was put in the children’s ward. Here’s me, I am fourteen and we got a woman next to me whos just given birth to a child whos a bit, the baby was a bit dependent, and then we got this guy who was, seven, this girl who was three and I was just thinking [laughs]. I couldn’t take, it drove me mad. I just did not know so I just went to sleep. I read a magazine, watched some telly, but then the usual stuff that was on television was, Playschool or something like that, I wasn’t really allowed to watch adult things you know, in the same way. It was excruciatingly bad experience, I have to say.

I mean if anyone is my age, I mean anyone who is my age at that time should insist that they want to be put in an adult ward. Because, you know, at least you could possibly have a conversation with someone, even though they might want to talk about, I don’t know, how great Winston Churchill was, or the Queen and something like that, it’s better than talking to someone who says, ‘Right well here’s a” Because obviously at the time Teletubbies were just the new fad, so I just said, ‘Yeah it’s a Teletubby. And I remember this you have four of these little Teletubby dolls and I just thought, you know, ‘that’s just fantastic’ [laughs].

And you were fourteen?

I was fourteen and I was just thinking, yeah, yeah, yeah, oh dear it was painful it really was. It was actually quite quiet as well, not many people in the [hospital name].

Did you go to see a specialist at that time as well who was a paediatric neurologist?

Yes yes my first was and he was in the outpatients of. It was painted, it had murals on the wall, you know, with Mickey Mouse like that and I just thought ‘I’m too old for this sort of stuff I really am. That was part of the dread of going in there ‘cos you just sort of think, it was an absolute racket, it wasn’t grown up it was childlike until you got in there to see him, waiting in the waiting room.