Epilepsy in Young People
Experiences of health services and professionals
Here young people talk about their experiences of health care and dealing with health professionals after they were diagnosed with epilepsy. Most we spoke with visited a neurologist at the hospital's epilepsy clinic regularly and many also saw an epilepsy nurse. A few said that their GPs were also important in their epilepsy care because they were in charge of their repeat prescriptions and regular medication reviews.
Almost all received their health care through the NHS, though a couple of people had seen a neurologist privately. One woman said she felt very 'lucky' to be able to do this; another felt that the care in the NHS and private sector had been pretty similar and she had 'not been impressed' by either.
Nick says NHS staff are great and work really hard.
Young people usually attended the epilepsy clinic with somebody else - a friend, partner or parent. Taking somebody to the clinic who has seen a recent seizure is often recommended because people themselves are often unconscious and can't remember what happened. People also liked to take somebody with them for emotional support and because it was a way for their friends to learn more about epilepsy. Other people could also help them remember to ask questions at the clinic and recall the information given.
Dave says it's good to go to the clinic with his mum. She talks about the medical aspects and he...
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.
Some people preferred to go to the appointment on their own and said that, over time, they'd gained more confidence to do that.
Jason used to go to doctor's appointments with his keyworker but has now started to go on his own...
I've only just started going on my own. I used to go with [name of keyworker]. I go on my own now.
Do you like going on your own?
Yeah, I like it.
Yeah. Why, why do you like going on your own?
It makes me feel more independent. Makes me feel I could do this sort of, makes me feel I could do stuff on my own, yeah.
Yeah, do you get to ask the doctor, if you have questions, about the medication or the blurred vision?
Yeah I do ask him that and he sometimes say, and he talks about how often I get these blurred visions, he talks to me what we're trying to sort out your medication.
On the whole, people felt that they were getting very good health care. Most saw their neurologist every 6 months, and if their seizures were well controlled, every 12 months. Those with poorly controlled seizures saw their neurologist every 3 months and many also had the option of calling their epilepsy nurse if they needed urgent advice.
A couple of people felt that the time between appointments was too long. One woman said she writes questions down as she thinks of them between appointments, so that she will remember to ask them when she next attends the clinic.
Many people also felt that the clinic appointments, which sometimes lasted just 10 minutes, were too short, especially if the doctor was giving information or their diagnosis for the first time.
Dealing with health professionals
Many people saw a different neurologist every time they went to the clinic. They found the frequent changes in staff confusing and frustrating because they felt each time they had to start from the beginning. Some said they valued the fact that they could see the same GP who knew them well every time, sometimes from since they were little.
Ashlea wasn't given much information by her neurologist and she wasn't happy with the care. She...
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 GP's 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.
Those who had a great consultant, and one who they saw every time at the clinic, stressed how important this was for them. One woman described it as 'hitting the jackpot'. People also wanted doctors to tailor care around their individual needs rather than to address them generally.
Nick says that in the clinic doctors need to see each person as an individual, not just as a...
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.
Some people had less positive experiences of health care. A few hadn't been happy with the particular consultant they'd had and had changed doctors. They emphasised how important it was to have a consultant they could trust and talk to, and encouraged other young people to find a doctor they were happy with. One woman felt she had initiated everything positive about her care and that doctors had been too 'passive'.
Ben was unhappy with a consultant who wouldn't change his medication that wasn't working. He said...
Carole has had many different neurologists and says they all have different attitudes. She...
Many people said they hadn't received enough or appropriate information about their epilepsy from their doctors, for example about treatment options.
Bex says it's confusing to see different doctors and nurses at every appointment, especially when...
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 felt he was given too much information about risks when he was in hospital. He felt scared...
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.
Communicating with health professionals
Good communication between doctor and patient is fundamental in all health care. The people we spoke with strongly emphasised how important it was for them to be able to communicate openly and safely with their neurologist, epilepsy nurse or GP.
It was particularly important for young people that health professionals listened to them and took their views seriously. They also felt it was important that their life whole life was taken into account when making treatment decisions, for example.
Harry trusts his consultant and says 'he's changed his life'. His epilepsy is discussed in terms...
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 who'd 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.
Some felt that it was easier to talk to the epilepsy nurses about the social aspects of living with epilepsy and that the nurses had a good appreciation of young people's lives.
Many people stressed how important it was that the consultant talked to them, rather than to their parents, as had often happened when they were younger. One woman said that, when she was a teenager, the consultant used to 'talk about you, not to you', which had annoyed her.
People said it was really important to trust and feel able to ask health professionals questions, but also to get appropriate and honest answers back. Many said that, over time, they had gained more confidence to ask questions but some said that, especially in the beginning, it was difficult to know what questions to ask or how to raise them.
Kirsty wants to know more about her epilepsy but feels uncomfortable asking questions when she...
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.
For some, it was difficult to raise sensitive topics they wanted more information about, such as sex, contraception, alcohol and drugs.
Carole found her GP very helpful. She preferred asking about sex and contraception herself rather...
It is sort of climbing over that barrier of 'Is this embarrassing?' but they are, they're very helpful, I mean they, they're very professional people that can get information and know information so, asking, if you're brave enough to ask the question you will get the answer [laughs].
You always had to ask, you weren't told by them?
I had to breach the subject definitely because obviously people are different at that age, they don't know what situation you're in. I mean, they don't know whether you're homosexual or not, or whether you've got a partner or whether you are just sexually active so, I feel that it's, I think they're right not to breach the subject specially, like with your parents being there or something like that when you're younger, you don't really want them to so, I find them not breaching the subject I think that's okay. I think they do ask you occasionally, but if they can kind of tell if you don't want to go there or not so, but it, it is definitely important to get the information.
Staying in hospital
Several young people we spoke with had at some point stayed in hospital because of their epilepsy. They had been admitted so they could have detailed diagnostic tests, an operation, or occasionally because they'd had an episode of status epilepticus.
Rachael describes waking up in an intensive care unit after an episode of status epilepticus. She...
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.
Most people had stayed in hospital for a few days or a couple of weeks. One man had had an assessment for a few months because his epilepsy had been difficult to diagnose and control. He said staying in had been a difficult experience and the food had been awful!
For most, staying in hospital had been 'scary' because they were in an unfamiliar environment. However, most felt that staff, especially the nurses, had been good and friendly.
Simon says staying in hospital was 'scary' but that the staff on the ward were nice.
What was it like in hospital do you remember?
You know really scary and stuff, like I didn't know where I was at. I was just in a scary environment really.
Were there other young people there on the ward or in the hospital?
There was young people like all sorts of different sort of people going past me like, all sorts of different injuries and…
I didn't like that at all and I wanted my mum to come with me and they would say to me, the only person that could come with me was my brother at the time. My mum and my sister couldn't come with me and I really wanted them to come and it was just like sort of sad for me really. You know that's the one thing I got scared of.
Yes, what were the nurses and doctors like do you remember?
Quite nice to me really.
They were nice?
Yeah so did that help a little bit?
Yeah it, it did a bit yes. Like if I needed anything I called them or, yeah.
One woman said that the lack of empathy she experienced from a doctor on the ward made her feel even worse about being in hospital. One man said he had felt 'ten times worse' about his epilepsy when he was in hospital because it made it feel more serious.
Katherine has had both positive and negative experiences at hospital and dealing with the staff.
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.
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.
Seeing other young people on the ward who were more ill or had more severe epilepsy had made some people feel worse. However, others found it comforting to meet others who had epilepsy. One woman said talking to others on the ward was a good distraction from the operation she was going to have, and she also found it helpful to speak to others who'd had a similar operation.
Will describes staying in a children's ward when he was 14 as 'excruciating'. He had to watch...
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.
Last reviewed May 2016.
Last updated May 2010.