A-Z

Epilepsy

Financial concerns for people with epilepsy

Many people with well-controlled epilepsy and in full time employment said that their condition did not affect them financially. Several people with poorly-controlled epilepsy also said that their finances were not affected in any major way. One woman, for example, reported that she and her husband were comfortable financially because of his pension and her part-time salary.

 

Explains that she has always worked and her epilepsy has not affected her financially.

Explains that she has always worked and her epilepsy has not affected her financially.

Age at interview: 33
Sex: Female
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

Others found that having epilepsy did restrict them financially. Some discussed the possible financial restrictions linked to employment. People with poorly-controlled epilepsy often felt that they could not work in stressful, higher paid occupations, so their earning power was limited. One man explained how he did not apply for a more demanding, higher paid job because of his epilepsy. Another felt that his epilepsy had affected his education, and that his lack of qualifications restricted the type of job he could pursue.

 

His epilepsy affects the work he can do and his finances.

His epilepsy affects the work he can do and his finances.

Age at interview: 26
Sex: Male
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

One man, diagnosed at the age of 27, was moved to another job because of his epilepsy, and suffered a big drop in pay. He also had problems with insurance, and advised finding the cheapest option.

 

His finances were affected when he was moved to another job; he advises seeking the cheapest...

His finances were affected when he was moved to another job; he advises seeking the cheapest...

Age at interview: 43
Sex: Male
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT
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. 
 

It can sometimes be difficult to find an insurance company willing to insure someone with epilepsy since this may involve risks that are hard to assess. Some of the people we interviewed mentioned problems with getting car insurance. Others had difficulties with life insurance.

 

Explains that she had difficulties getting life insurance.

Explains that she had difficulties getting life insurance.

Age at interview: 30
Sex: Female
Age at diagnosis: 17
SHOW TEXT VERSION
PRINT TRANSCRIPT
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. 

Financial restrictions particularly affected those people who were not working because they had poorly-controlled epilepsy. One woman explained that, although she wanted to work, she risked losing her benefits if she could not hold down the job. She recommended having a scheme which would enable people to use some of their benefits for future security.

 

Explains the risks involved if she works, and suggests that benefits should go towards future...

Explains the risks involved if she works, and suggests that benefits should go towards future...

Age at interview: 42
Sex: Female
Age at diagnosis: 6
SHOW TEXT VERSION
PRINT TRANSCRIPT
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. 

People who could not work because of their epilepsy discussed the financial constraints on their lives. Some said that they could not afford moving home, buying a car and going on holiday. Several of them also noted that personal happiness and well-being were more important than material quality of life.

 

Explains that, although there are financial restrictions, personal happiness is more important.

Explains that, although there are financial restrictions, personal happiness is more important.

Age at interview: 48
Sex: Female
Age at diagnosis: 10
SHOW TEXT VERSION
PRINT TRANSCRIPT
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. We've 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 we'd 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 one's life happily is really what I'm aiming to do. 

Some people with poorly-controlled epilepsy are entitled to claim certain social security benefits and to special concessions for travel see GOV.UK for more details.
 

Last reviewed May 2016.
Last updated May 2016.

donate
Previous Page
Next Page