In terms of, for example work, have there been any financial implications because of having epilepsy or not in your case?

I’ve just been sort of working, I stopped for a couple of months, then I got into working and I’ve been working since. Some people no they give up working, it depends on the person, whether you can get help from the Council that way. But I have worked actually all the way through my condition and I’m glad I have. But other people they think no they can’t, it depends on whether their seizures are controlled by medication or what.

Have there been any financial limitations because of the epilepsy?

I feel that there has been, without a doubt. The job that I’ve been doing previously, and the choice of jobs, a) because of the limitation on the type of jobs you can do and b) the change in your ability to deliver yourself, say when we talked about sentencing [problems with speech and remembering words]. I feel that that does actually interfere and it would actually hinder my progression in the job that I would hope to do, or had hoped to do in the past. The job that I’ve been doing recently wasn’t the most financially rewarding, so although there have been other jobs that I could have done which would have paid more, I did feel that there was a direct link in the job that I went on to do following my diagnosis and the salary I received.

Obviously in the early days because I mean I can’t remember exactly but I was on probably £16-17 000 when I suddenly found I’d got this condition and then went to be paid about £5000 when I was given an alternative administrative job with the police, which was a massive, massive reduction. Obviously you get a pension in the police so being in the police force you are cushioned a little bit from probably what other people might experience, because you do get a pension. But obviously it took a while to build back up to where, you know, I am now. And so for a number of years the answer would be yes the financial constraints were very, very difficult, and we had to cut our cloth accordingly. But we got around it, it was one of those, as I said earlier on, you know you’ve no choice. It’s not a case of, you know you’ve just got to get on with it. And we did do and then I decided that, as I say, drive forward and try and make something more of myself. And now I would say I’m as well off as I would have been had I stayed in the police. In terms of insurance, obviously there were some very difficult times when it came to trying to get insurance for cars in the early days, because I was you know quoted some ridiculous amounts of money when I first went back into driving.

But one thing I’ve always done, irrespective of the epilepsy, is that if I want to buy something I always look at every option and research it to try and find the cheapest solution with the best quality. And so phoning round numerous insurance companies I was eventually able to find companies who were far more understanding.

There are financial implications, although running a car is expensive, not having a car is also, can be expensive. I’ve never had a problem with a mortgage, or a few problems with life insurance, and I’ve just taken out a mortgage and the life insurance wouldn’t cover me for certain things because of my epilepsy;

Nevertheless I’m still scared to do so [take up paid employment] because if I stop the benefits I’m receiving now, go and do a job and I fail, if I can’t keep up with my employer’s requirements, I’ve lost everything. I’ve got to go through the humiliation of trying to explain to somebody yes I do need those benefits, yes I am disabled, and it gets harder and harder to do that at the moment, benefits are harder and harder to receive. So it’s a bit of a risk me even taking that.

I wish there were some kind of system whereby someone, there must be thousands like me, if I lived an intelligent life now I can do what the government wants me to do, I could save what money I’ve got and use it in my old age. There must be some way of covering that gap whereby it all falls through when you get ‘8000 and use it all. I feel like I’m living too high a life now. You know I could buy expensive food, I can use taxis, I can go out to pay for entertainment, I would rather use that money for my old age, for my medical security but nobody minds if I spend it on cigarettes, alcohol or whatever. And that doesn’t seem right! (laughs)

I would be quite happy if the state for example built up some kind of token scheme where I’m not spending the money, I’m not having to have savings but I’ve got that insurance there for the future and I don’t think it would be too difficult to build up a certain token scheme whereby at the end of the week I could use what money I’ve got to buy however many state tokens I want that could be used for health and health only or for housing and housing only.

Have there been any financial implications because of this or that’s not come into it for you?

No, for me there have been many financial limitations. Weve never been on holiday, these two trips to the United States and to Canada, they were paid for, I was very lucky I got a ’60 ticket because a family member is a pilot so I’ve been very, very lucky with the help that I’ve been given. It seems to really have just fallen into place and a lot of the complementary therapy has ended up for me as being, I haven’t had to pay for it. So I do feel that I’ve been very blessed in those situations. But we haven’t got the things that wed like to have. We haven’t got a car that works all the time. It puts an extra strain and burden on us as a family having my husband working in a relatively low paid job; me as his wife not bringing in any paid income. So that has been difficult. Its been frustrating not being able to do the things that I would have liked to have done because I haven’t had the money to do them, and I think one can see that in a sense if one looks. But on the other hand it’s also a learning process that material things aren’t the things that are most important. And really to be happy and to live ones life happily is really what I’m aiming to do.