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Epilepsy

Epilepsy - driving and transport

Driving and travel can have a big impact on people's daily lives. Some of those we interviewed, who were diagnosed with epilepsy as adults, had been driving before they were diagnosed. Many said that they missed being able to drive because they were very much used to it. Not being able to drive came as an inconvenience to some and a huge disappointment to others.

Many people who had had to give up their driving licence discussed using other means of transport and adapting to public transport. Others discussed living in areas that had a good train service or living close to the train station.

 

Explains that she lives close to a train station because she cannot drive.

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Age at interview: 53
Sex: Female
Age at diagnosis: 2
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I just got used to it [not driving]. The only one time it had any concern was when I had a job and again it was just common sense, this is the only thing that has restricted, this is why we live where we are because of not being able to drive. Now not being able to drive has worried I am sure a lot of people because also its a lot more well known that women drive and so on.  Having not driven I don't miss it, if people have driven and then they lose their, it must be awful for them, I feel very sorry for them. 

But no, when we went to look for somewhere to live we got, that was the main thing, we had a circle round a station, well you know yourself, and being a mover still, it wasn't going to stop me moving you know because I've got epilepsy.
 

Some people had come to rely on trains and buses, and noted that having a car can be an extra expense. For those with poorly-controlled epilepsy, concessions on rail and bus are available and many recommended finding out about and making use of these.

Some people with poorly-controlled epilepsy are wary of travelling alone. Others described occasions when they had had seizures on the bus or train. A few recalled having had absence seizures and missing their stop. Sometimes the fear of missing stops and getting lost concerned people.

 

Recalls having an absence seizure on a bus and missing her stop.

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Age at interview: 49
Sex: Female
Age at diagnosis: 14
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Well I, because you know when my husband was at work I had no choice but to use general public transport, but I don't keep hold of the fear that I might have one [seizure] on the bus. And I have come home before now and I've got the bus, and got on the bus and I'm actually talking to the person I'm with on the bus, and then I come over feeling really, really peculiar. And I know that I'm  going to have a fit and I obviously don't fall down and the person I'm with don't know me that well, we know each other because we travel on the same bus and I've gone way past my bus stop. And the next thing I know I'm up in the middle of ? Square which is far from here and I'm thinking oh my goodness what am I doing here? And then I'm trying to think how do I get from here to where I live and it's that can be worrying. But you mustn't let it get on top of you because if we all let it take over, we wouldn't go out in the end would we? 

Not being able to drive can also have an impact on work. A few people could no longer drive to customers and clients. One woman said she now had to use public transport for work. Another discussed moving home so that she could take the train to work. She also described the lack of independence she felt and some of the disadvantages of not being able to drive. One man, a vehicle technician, explained how he had had to temporarily change roles at work until he got his licence back.

 

She now uses public transport for work because she cannot drive.

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Age at interview: 31
Sex: Female
Age at diagnosis: 25
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I take the train - and its fine. And you can work on the train.  Its quite good because I know I can't drive, and everyone else in my team knows I can't drive them either, so I just get on with it really. But that said because I live in Birmingham and there's a good infrastructure with good buses and good trains, it was a bit different before we moved here when I was living in Somerset and the buses stopped at 5 in the evening, and that was that really. So'that's part of the reason why we chose somewhere like Birmingham. Because although I have had my driving license back on and off, we've got one car, we're not going to buy an extra car for me, I'm quite happy to use public transport. 

Because you just get used to it. 

You do get used to it. I mean when you go to parties you can be the one who gets to have a glass of wine - always! (laughs).  Because you can't drive (laughs). 

 

Discusses changes she made to her work because she could not drive and some of the disadvantages...

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Age at interview: 30
Sex: Female
Age at diagnosis: 17
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And then about, I was driving, and about two and half years into working, so by then I'd been almost four years without a fit, I had another fit, on holiday in the sun. And it sort of, my world fell apart again. That was the end of the driving. I had to move location for work, to move to London, so that I didn't have to drive. And I then went on a progression of seizures, on and off, at all different times at the evening, a lot in the morning, and it really started to damage my career and also my self-confidence. 

I am very lucky I live in a city with great public transport and where bikes are the norm. But there are times when I wish I could go to Sainsburys on my own or, the driving is hard, it [not being able to drive] reduces your independence. My friends laugh about me that I'm the biggest walking bus timetable person in the country but, and that's funny, but it involves taking three buses to get to somewhere that you could get to in ten minutes. And yes occasionally you can jump in a cab but you can't live your life like that. And that really frustrates me. 

And you know what's it like being married to somebody who doesn't drink, but she can't drive you anywhere. You know, there are no benefits in that. 

       

Not being able to drive particularly affected those living in rural areas. Inability to drive also affected some people's families. Many people did not want to become a burden on others. Several recommended finding out about and using the travel concessions available to people with poorly-controlled epilepsy. A few people urged those with poorly-controlled epilepsy who were still driving, not to drive.

 

Explains how not driving affects his family, and the travel concessions available to people with...

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Age at interview: 51
Sex: Male
Age at diagnosis: 15
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The problem, again I'm being a bit negative, but the problem of lack of driving does impact on the family because there's only one driver, in our case and my wife does have a bad back problem as well so that she does, she can only drive for about one and a half hours at a time and then has to have a rest. Of course if I was able to drive then travelling to Scotland where we like to have a holiday would be much faster, but it isn't It does mean that, we've got active boys, especially the younger one who plays a lot of football, I can't really take him round the countryside. But my wife, who isn't so fond of football, finds herself going around with him. So that is, is a factor. 

As far as the sufferer is concerned they have to rely on public transport which is very up and down. And its very frustrating sometimes to wait an hour for a bus knowing that you could probably have walked it and if you had a car and driven it you'd have been there in five minutes. What I would, being positive, do make sure you get your best benefits from transport because you can get a disabled pass for the railways. The Epilepsy Association has fought long and hard with the railway companies to make sure that we could have disabled rates because we were medically unfit to drive. So it was quite right that we should have rail cards, cheaper rail cards. So do fight that one. Your Local Authority may be able to help with cheaper bus fairs. Certainly where I come from, I have a bus pass that allows me any journey is 20p. This is because I'm medically unfit to drive.  Do look into what you may be allowed to do. 

People with well-controlled epilepsy also discussed some of their concerns about driving. One man said that, although his epilepsy had been controlled for many years, he would not come off his medications because of the impact on driving should his seizures recur. Another man described the impact on driving when his seizures did recur. One woman, who was seizure free and off medications, discussed her plans to take driving lessons and explained how this would affect her life.

 

He had to stop driving again when his seizures recurred.

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Age at interview: 43
Sex: Male
Age at diagnosis: 27
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I started for example that I'd lost my driving license for 21/2 years because at that stage you lost your license for 2 years, so I was uncontrolled for like 6 months, then the 2 years on top of that, but then of course because of the relapse I ended up with the epilepsy coming back again. So although I'd got my license back, I only had it for 6 months and in total for a period of 7 years I only had my driving license for 6 months, which I think my wife found harder than I did because I'm not the best back seat passenger. So I coped with that. Again it was just one of those things you know that I always took the view that que sera, sera whatever will be will be, just get on with it. And so we looked towards you know the day when eventually I would get my license back. 

 

Discusses her plans to take driving lessons and how this will affect her life.

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Age at interview: 39
Sex: Female
Age at diagnosis: 25
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Well I've just, future plans is quite topical because I've just been on the phone to the DVLC, I'm just waiting for my licence to come back. As soon as that lands on the mat I'm going to do a week's intensive driving course and to me, that will open so many doors for me. I mean my career had to be put on hold, you know in the building industry because I couldn't jump in a car and go and visit customers and clients and things. So that to me is going to be the biggest change in my life, being able to drive. Being a keen photographer as well I can chuck my cameras in the car and go and take pictures. To not be able to drive is just suffocating. That will be the biggest, the biggest thing for me.

Last reviewed May 2016.
Last updated March 2014.

 
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