Health

LIVING WITH EPILEPSY: EMPLOYMENT

It is not sensible to be a steeple-jack or scaffolder if one has many seizures. But just what restrictions on employment should be applied to those with epilepsy?

First of all, there are the legal restrictions on driving. This may stop employment as a travelling representative, for example, but these Regulations have a wider effect in making travel to a job more difficult, especially in rural areas, however suitable that job may be.

Driving is the most obvious way in which a person with epilepsy can harm others, as well as himself, during a seizure. But there are occupations of heavy personal responsibility to others which those with uncontrolled seizures must not do. Surgery and nursing are obvious examples from our own health professions. The occupations of airline pilot, and bus, train, mass transit and crane driver, railway signalman, and merchant navy sailor, are other examples. The Armed Forces, fire, and ambulance services and Police also exclude those with continuing seizures.

In other jobs, there is no real risk to bystanders during a seizure, but there is a substantial risk of injury or death to the person with continuing epilepsy. The operation of heavy moving machinery, including agricultural machinery, work near conveyor belts, work at heights, particularly in the construction or electric power industries, and work underground or underwater should all be avoided. However keen the subject may be to take his own life in his hands, it is not fair to burden employers if there is a substantial risk of a mutilating or fatal accident.

One of the agonizing questions that people with infrequent seizures must ask themselves is whether to tell a potential employer about them. Obviously it is best if they do because the employer can take into account any remote risks about which the applicant is unaware. Employers can make an occasional allowance for rare but unexpected absences from work, and they can, in an informed way, cope with occasional seizures at work. The truth of the matter is that many employers reject those with seizures which are few and far between, or those who have had no seizures for some years, for jobs which carry virtually no risk to the person with epilepsy or to others.

Surveys of public attitudes towards those with epilepsy are in our view meaningless, insofar as potential employers may well make favourable remarks about the employment of a hypothetical person with epilepsy in response to an interviewer, because this is the polite and modern thing to say. However, it is their actual behaviour in hiring and firing that counts. A truer measure of the amount of prejudice against employing people with epilepsy would be to send round two personable young people with equal qualifications in response to 100 advertisements for a post as a secretary, for example. In half the interviews each applicant would indicate that they suffered from mild, well-controlled epilepsy. The success rate with and without revealing this information would be a fair guide to current prejudice against the employment of those with epilepsy. Unfortunately such a study would be unethical, insofar as it would waste the time and resources of employers. Nevertheless, we would be fascinated to know the answer!

Those with epilepsy intuitively know the likely result from the results of their own interviews. One survey of people with epilepsy in London showed that over half those who had two or more full-time jobs after the onset of epilepsy had never disclosed their epilepsy to an employer, and only one in ten had always revealed it. Furthermore, if seizures were infrequent or nocturnal, so that applicants considered that they had a good chance of getting away with concealment, the employer was virtually never informed. Whilst not condoning or encouraging dishonesty, the relative success of this policy can be judged by the fact that 74 per cent of the men of employable age with epilepsy were employed at the time of the survey, compared with 81 per cent of male workers of the same age group in the UK as a whole.

Whatever the policy about disclosure, applicants for a job will be more successful if they follow the general rules of taking care with their written application, taking trouble to inform themselves about the responsibilities of the post and about the employer, presenting themselves well at interviews, selling their ability to do the job, and convincing the prospective employer that they have an enthusiastic desire to work. What is absolutely disastrous is for frequent rejections to lead to the development of a chip on the shoulder, so that a potential employer is confronted by the attitude ‘I have epilepsy; you haven’t; you have a duty to employ me’. We have helped look after patients with seizures who succeed in presenting themselves and their epilepsy in such an unfavourable light that we feel there can be no strong motivation to obtain work.

Obtaining a job is obviously only the first step. Most of us want promotion up to the limits of our energies and capabilities, and here again epilepsy, even if well controlled, often spoils chances in life. It is difficult to measure the frequency with which those well qualified for promotion are overlooked, but one study found that the rate of dismissal following the onset of epilepsy was increased approximately sixfold.

There is another more subtle way in which epilepsy can hinder employment and promotion. The fear of encountering rejection, or the fear of leaving an established position with a tolerant employer may cause the people with epilepsy to deny themselves chances for betterment. Just as the employer may be prejudiced against ‘epileptics’ so may the epileptic be prejudiced against ‘employers’, believing them all to be lacking in understanding.

There may be an advantage in young people with epilepsy seeking a career in small organizations, where regulations for employment, sick leave, insurance, and pensions are flexible compared with those of, for example, the Civil Service.

As might be expected, if seizures occur frequently, one study showed that it was much more difficult to hold down a job. The study showed that a third of the unemployed were having generalized seizures monthly or more frequently, whilst only 2 per cent of those in work were suffering equivalently. Roughly the same proportions held true for partial seizures. Apart from seizure frequency, the main barrier to employment is lack of any special skill. One survey found, as could have been foretold, that virtually all those with frequent seizures and no special skills were unemployed. It is here that specialist advice from employment agencies should be sought.

In the UK the Employment Service provides a wide range of services to help people with disabilities to get and keep suitable employment. Most disabled people helped by the Employment Service are helped by general services. There is also a network of 71 Placing, Assessment, and Counselling Teams (PACTs) to help those people with disabilities who cannot be helped properly by the general services. This may include some people with epilepsy. People in PACTs are called Disability Employment Advisers (DEAs). The DEA can be contacted at, or through, the local Employment Service Jobcentre. It is not necessary to be registered as disabled to use most of the services provided through the DEA, though they may recommend registration. The Disabled Persons Register is a voluntary register of people who want to work, and are able to do so, but who have difficulty in getting or keeping suitable work because of their long-term health problem or disability. The Register is run by the Employment Service through its DEAs. All employers who have 20 or more workers have a duty, under the Disabled Persons (Employment) Acts 1944 and 1958, to employ a quota of registered disabled people, usually three per cent of their total workforce. Consequently a big firm is keen to employ someone capable of good work if they happen to be on the Register. Before registration, the family doctor or neurologist will, with the person’s consent, fill in a special form which provides basic information about the type and frequency of seizures, and any other associated disability.

The DEA may consider that a person with epilepsy may benefit from a course of vocational training, to equip him or her with a special skill not already possessed. For example, a nurse with frequent seizures might no longer be suitable for nursing, until the seizures were controlled, and the DEA might well advise that she or he take a course to encourage the development of business skills. This could be arranged through, and at the expense of, the local Training and Enterprise Council (TEC) (Local Enterprise Company (LEC) in Scotland). Training allowances may be payable. The DEA could put the client in touch with the TEC (LEC).

For those with frequent seizures, possibly in association with learning disabilities, the DEA may advise a job in Supported Employment, in which severely handicapped people work in a supported environment—either in a Remploy factory, a supported workshop run by a local authority or voluntary body, or in a supported placement in ordinary employment.

The DEA can also advise on the wide range of help which is available, where appropriate, through the new Access to Work Programme. Individuals can get up to £21 000 worth of help, over a five year period, to pay for things such as extra costs of travel to work for those who cannot use public transport because of their disability; vehicle adaptations; special equipment needed at work; adaptations to the employer’s premises; communication support for blind or deaf people at work; or human support. The DEA can also offer a weekly grant to an employer who provides employment on a trial basis to give a disabled person the chance to demonstrate that they can do the job.

There will always be a nucleus of people with epilepsy who are unemployed either temporarily or more or less permanently. The person who is capable of work but unemployed may, as time passes, become progressively more unemployable if not given occupation and support. It is here that local authority social workers DEAs, and epilepsy associations can help.

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