Republicans for Satan. Health News and Information

The Ecology Unit (sometimes referred to as the Environmental Control Unit) plays an indispensable role in the diagnosis and treatment of allergies. This unit was established after many years of development.

I first started hospitalizing patients for the diagnosis of food allergy in 1950. I chose complicated patients, whose problems could not be worked out simply by testing with one food at a time in the office. (In those days I employed feedings of whole foods in the office, rather than provocative tests, as today.) These patients rarely ever achieved a “base line” of good health before any particular test against which their reaction could be measured. It was therefore impossible to tell to what extent a particular food, or other environmental exposure, was responsible for their symptoms.

At this same time, I had occasion to present some of my earliest patients with “mental” symptoms to the psychiatrists at the Milwaukee Sanitorium. Dr. Josef Kindwall, chief of staff at this well-respected institution, listened to my presentation and then suggested that I fast such patients, in order to clear the board, so to speak, of all preexisting symptoms.

Six patients were therefore hospitalized in separate rooms and fasted. Each patient soon complained of heightened symptoms and, being inexperienced, I was disturbed by their worsened condition and decided to cancel the tests. In fact, these heightened symptoms in the early part of a fast are now known to be normal withdrawal reactions to addicting foods. Thus the initial attempt to fast patients ended in failure.

In April, 1951, the chemical-susceptibility problem was first described, and so, in the winter of 1953, were the effects of natural gas on susceptible individuals. Considering these unexpected sources of reactions, it became even more obvious that in order to achieve a “base line” of health, it would be necessary to remove a patient to a sheltered environment, in which food and chemical exposures could be thoroughly controlled. This belief was reinforced by seeing an occasional patient who felt distinctly better in the chemically less contaminated environment of a hospital. Some doctors referred to this phenomenon as “hospitalitis,” an alleged “disease” in which an individual craves a protective environment, but I believed the reason lay in the effects of the nonpersonal environment on the patient’s health. In the meantime, I told Dr. Donald S. Mitchell of Montreal about my difficulties in fasting patients and about the need to do so, given the complexity of their problems. Dr. Mitchell, on his own initiative, attempted to confirm this and was able to fast patients for longer periods of time. He discovered that the withdrawal symptoms subsided by the third or fourth day and that after that, the patients generally felt better than they had in a long while.

In 1956, I therefore decided to attempt a hospital fasting program again. This time the experiment was a success, and certain food and chemical allergies were diagnosed which simply could not have been found through any of the office procedures used at that time.

This experience led to a new approach to the diagnosis of allergy-caused illnesses. Since that time, I have hospitalized, fasted, and tested over 10,000 individuals in this manner. Until 1975, such testing was done in separate hospital rooms of a general hospital. Patients did reasonably well in this environment. One problem, however, was that chemically susceptible patients were still exposed to tobacco smoke, perfumes, and other hospital fumes and odors, which interfered with the accuracy and validity of the testing. Sometimes night nurses might smoke in the nursing stations. At other times rooms were chemically disinfected and residues of such agents made certain rooms unavailable for use.

Since 1975, therefore, a separate Ecology Unit has been maintained as a section of a hospital in a Chicago suburb, and it is far more controlled than any ordinary hospital room or ward could be.1

The procedures in the Ecology Unit are an indispensable part of the treatment for allergy. Traditional diagnostic techniques are like a table with three legs. The first leg is the patient’s history, the second his physical examination, and the third his diagnostic tests. In the Ecology Unit, all three of these standard methods are employed, but in addition there is a fourth leg. Often it is this fourth diagnostic leg which provides the sound basis for an answer. Its value has been confirmed by many physicians, and about a dozen are now using this sort of hospitalization in their daily practice. Indeed, in the combined experience of clinical ecologists using these techniques in a hospital or environmentally controlled setting, approximately 20,000 patients have been observed under controlled conditions during the past three decades (see Appendix B for a list of clinical ecologists practicing in a controlled environmental hospital setting).

The basic idea of the Ecology Unit is control. For several weeks, all aspects of the patient’s physical environment are scientifically managed. The air he breathes, the food and water he consumes, and everything that might come into contact with, or enter, his body, is subjected to prior scrutiny.

This technique, in effect, borrows a page from the experimental scientist’s book. “It is a controlled clinical experiment,” Dr. Lawrence Dickey once wrote of the Ecology Unit, “using an individual patient, and has all the validity of a controlled laboratory experiment. Both require control of as many variables as possible.”

This may seem like a big job, and indeed it is. First of all, one must control what the patient brings into the hospital. Plastic suitcases, synthetic fabrics, cosmetics, and so forth must all be left behind. Patients can only wear garments made from natural fabrics, such as wool or cotton, and only those which have been washed many times or which were not originally treated with chemicals.

Patients are allowed visitors during their stay, which averages three weeks. But the visitors are warned at the door not to enter if they are wearing cosmetics or scent of any kind and not to bring in flowers, candies, or other substances that might make some patients sick or destroy the validity of the test reactions. Staff members, like patients and their visitors, are not allowed to wear any perfumes or scents.

Patients are then fasted on spring water for an average of five days. The purpose of the fast is to completely clear the digestive tract of all food, a process which is often facilitated by the use of milk of magnesia or alkali salts.

In fasting, the patient may experience withdrawal reactions in which his accustomed symptoms get worse for a few days before they get better. The arthritic patient’s joints may flare up. The person with a chronic headache problem may suffer a particularly bad attack. The moderately depressed may get a bad attack of the doldrums.

When the worst of the withdrawal reaction is over, however, the patient is tested blindly with several different waters. One of these is the local tap water, and the others are commercially available bottled water (only in glass bottles, never plastic). A new water is tested every three hours, if there has been no adverse reaction to the previous test sample. The patient rates the waters on a scale of zero to ten, without knowing which water he is receiving. He keeps a record of his reactions to the water samples, and the one he tolerates the best will be his compatible water for the remainder of his stay in the hospital. The compatible water is continued on first returning home.

After four or five days, the patient usually feels better; in fact, he may feel healthier than he has in months or years. For example, some patients who have been prostrated by fatigue are able to get up and bustle about. Others who have had pain find that they are virtually pain-free. If the symptoms do not go away, and sometimes they do not, then the fast is prolonged. There is ordinarily no hazard in this, provided that the patient does not have a medical condition which makes fasting dangerous. At all times, of course, the fast is carefully monitored by the medical and nursing staff.

Some fasts have lasted ten days or more. Of course, there are patients whose symptoms are apparently not the result of environmental exposure or for whom even the minimal exposures of the Ecology Unit are disturbing. Such patients may not improve. In the great majority of cases, however, the fast will eventually bring about a cessation of old, disturbing symptoms, and a new sense of well-being, sometimes bordering on the euphoric, will set in. Fasting breaks the addictive cycle of the sick person to the foods and other environmental substances making him ill.

The chemical environment in the Ecology Unit is particularly controlled. Just as there is an attempt to prevent the entry of potentially harmful materials from outside, so too-everything inside the unit is kept as innocuous as can be. This gives the unit a somewhat old-fashioned appearance. The couch in the lounge, for instance, is made of well-worn leather, and the chairs are fashioned from wood and metal, upholstered with cotton or felt, and covered with natural fabrics. All of the bedding is made of simple, untreated cotton, and such things as sponge-rubber pillows or mattresses, draw sheets, upholstered furniture, rug pads, or even tubing made with rubber, are forbidden.

Plastics have also been banished from the Ecology Unit. There are no mattresses with plasticized surfaces, no plastic covers on the pillows, no plastic furniture, shower curtains, drapes, slippers, or handbags.

Initially, there was a problem with the floors. Some of the patients simply did not lose their symptoms, even after a prolonged fast. We finally learned that before the Ecology Unit had taken over this particular space in the hospital, the baseboards had been sprayed with a chemical pesticide. It is virtually impossible to entirely eliminate such sprays. The baseboards and the old floor, therefore, had to go and new tile baseboards and flooring were put down. Since then, far fewer patients have failed to get rid of their symptoms on the fast.

In addition, the Ecology Unit has its own broom closet, and the cleaning personnel use only soap and water. Since there are odors and fumes emanating from other parts of the hospital, it has been necessary to seal off the stairwells, elevator shafts, laundry chutes, and ventilating systems to prevent leakage into the unit. Even the latch holes on the doors were plugged to keep out cigarette smoke. When it is time to paint, the entire floor is evacuated for a week. In addition, large and effective air purifiers are kept running most of the time, despite the fact that the Ecology Unit is located in one of Chicago’s least polluted suburbs.

Despite these precautions, chemical contaminants sometimes do get into the unit. Recently, for example, during the shooting of a film, a solvent-based marking pen was opened. Although the pen was not open for more than half a minute, at the next morning’s staff meeting one of the nurses reported that several chemically susceptible patients had gotten ill at the time of the shooting. The answer almost certainly lay in this marking pen. When the error was realized, the door and window of the room where the pen was had been foolishly thrown open, blowing the fumes across the hall and into the room opposite. The patients who had gotten ill were in this room. It is because of reactions such as this that great strictness is exercised in controlling chemical pollution of the Ecology Unit.

*95/110/2*

The brain is a marvellous organ and a great gift from the Creator. We would be lost without it; we could not plan, carry out or complete anything. So we have every reason to be grateful for it every day of our life. If a person voluntarily abstains from food or is made to go hungry, and as a result loses a great deal of weight, the weight loss in the spinal cord and in the brain is hardly noticeable. The fact that everything else is affected first shows the importance of the brain as the control centre of most other processes in the body.

A good illustration of the human brain is that of the walnut. The hard shell can be compared to the cranium. The two-lobed seed resembles the cerebrum, and the skin, which peels off easily in freshly picked nuts, may be likened to the meninges. At the back of the head, between the spinal cord and the brain, lies the cerebellum, which is approximately the size of an orange.

*95/28/1*

After the illness has passed, we must direct our attention to the follow-up treatment, being mindful that the period of convalescence should not be short. Even though the acute symptoms have subsided, we should still apply physiotherapy. Also, continue taking diuretic or excretory medicines even if the fever has subsided. This will eliminate all of the accumulated toxins so that no damage elsewhere in the body is possible.

Every bout of flu should receive follow-up treatment. In fact, with any infectious disease it is advisable to continue the treatment conscientiously until the patient has fully recovered. This is the only way to prevent after effects, which can be much more unpleasant than you think. If you become impatient, just remember that you remain prone to contracting a new infection until all vestiges of the last one have been eliminated during convalescence.

*94/28/1*

Secondly, we must employ a selection of herbal medicines, such as Nephrosolid and Boldocynara, for these remedies promote increased excretion through the kidneys and liver. By taking Echinaforce we can prevent irritation and inflammation. At the beginning of the illness, the flu drops Influaforce are helpful. These drops contain Baptisia (wild indigo), Lachesis lOx, Echinaforce, Bryonia 3x (bryony), Aconitum 3x and Solidago, and have always proved effective in minimising the virulence of the infection.

Diet is very important for a flu patient. While fever is present, neither protein nor fat should be eaten. Going on a liquid juice diet for one or two days has proved to be very beneficial. Grapefruit juice, diluted bilberry (blueberry) juice, also blackcurrant juice alternated with diluted beetroot juice will be received as a blessing by the patient. The intake of liquids should be greater than under normal circumstances.

*93/28/1*

The taking of a medical history also reveals the difference between ours and the traditional approach. Traditional medicine is centered on the body and its various organs. It is called anthropocentric, or body-centered, medicine. A traditional doctor is mainly concerned with treating the body and focusing primarily upon the most distressing physical symptom or “chief complaint.”

In the traditional history, previous medical problems will also be noted briefly, but in general there is no attempt to link seemingly unrelated “nonmedical,” past problems in the patient’s life to the present illness. Of course not— for no theoretical framework exists to make such connections. In general, symptoms and organs are neatly compartmentalized and viewed in relative isolation from one another. The history of a person’s illness is thus seen narrowly, as the history of one particular symptom or syndrome, rather than broadly, as a history of increasing ill health stemming from environmental exposures.

Although the dates of important medical changes may be indicated on the record, the reader of such a traditional medical history tends to be relatively unaware of the long-term progression of symptoms which may have preceded the current illness. In addition, traditional medical histories tell almost nothing about the environmental facts of a patient’s life. The doctor rarely asks about the details of job or hobby, about cooking or heating systems in the home, or methods of insect control used in the patient’s vicinity. To him, these seem irrelevant and outside the practice of medicine as he was taught it in medical school.

If currently available tests show no “organic” disease, the doctor is more likely to ask probing (and sometimes leading) questions about interpersonal relationships, such as problems with a spouse, children, or parents. Generally speaking, however, little effort is made to relate the “chief complaint” to other problems in the patient’s life, and the “medical” facts tend to be separated from the environmental facts.

The basic cause of a chronic illness is rarely exposed by this type of traditional history-taking. Since the doctor fails to comprehend the subtle and hidden give-and-take between the environment and the patient, with its ever-shifting balance of environmental challenge and individual response, he cannot understand the patient’s seemingly unclassifiable illness.

A patient with a long history and a thick file frequently becomes a “neurotic” in the doctor’s eyes, and this judgment is passed along from one doctor to another. In such an atmosphere, doctors tend to become cynical about many patients’ complaints, while patients bitterly reject established medicine.

I call this traditional approach the “ABCDs of modern mass-applicable medicine.” A stands for Analytical: the medical profession tends to chop problems up into neatly compartmentalized specialties, rather than seeing the broad outlines in a synthesized (unifying) fashion. B and C, in this scheme, stand for Body-Centered. The doctor looks at the body but fails to see the environment (mainly physical and nonpersonal) which impinges on that body at every step and with every breath. D stands for Drug-oriented. The traditional physician almost always uses drugs to alter or neutralize symptoms whose basic cause(s) he does not understand. Analytical, Body-Centered, Drug-oriented medicine has many achievements to its credit, but it offers little to the growing number of patients who are suffering from environmentally induced chronic illness.

The history-taking of clinical ecologists is quite different. Whereas in traditional medicine, the taking of the history (which is one of the most important portions of the diagnostic process) is usually assigned to the least experienced member of the medical team (the intern or medical student), the clinical ecologist himself usually conducts his own interviews. Some people think a doctor wastes valuable time by doing this. If important leads are to be uncovered, however, it is necessary for one experienced person to be familiar with the details of each individual case.

Because of the essentially addictive nature of many environmental problems, especially in their earlier, or stimulatory, phases, medical histories can be paradoxically misleading. For example, an untrained history-taker can overlook the significance of a patient’s remark that he “loves” or “craves” a particular food or chemical, and that eating, drinking, or inhaling that item makes him feel better. A conventionally trained doctor or nurse is likely to encourage the patient in the use of such a substance, while a clinical ecologist will immediately suspect it as a source of allergic/addictive responses.

The form of the interview which a clinical ecologist conducts is also different from that in traditional, ABCD medicine. Instead of looking at the body as a collection of various organs and parts, with medical and scientific subspecialties organized to deal with isolated problems which affect them, clinical ecology emphasizes the wholeness of the individual and the uniqueness of his experience. It thus forms part of the larger movement toward “holistic” medicine, which is gaining increasing importance.

Emphasis is put on recording events in a chronological fashion. The patient’s illness must be traced not just to the onset of the present symptom but to the beginning of his overall ill health. This, in turn, must be correlated with significant events in his life history.

Getting the medical history usually takes me about one hour. First, I generally let the patient explain who referred him and why he has come, in his own terms. If he has come because of a well-defined problem, such as headache, I ask him when he started having headaches and let him make any statement he wishes about this problem.

If the patient cannot single out any overriding problem but simply feels chronically ill, with many complaints, I ask him when he ceased being well and started feeling poorly. In other words, I try to orient the history (as the name implies) to the development of the problem in time. However, some people cannot give a chronological history. Either they do not think in those terms or their minds are too clouded by their disease. In these cases, I simply ask the patient to state all of his symptoms according to the categories explained in Chapter 8. Briefly, the categories are: physical localized symptoms: 1) upper respiratory, 2) lower respiratory, 3) gastrointestinal, 4) dermatological, 5) genitourinary. Physical systemic symptoms: 1) fatigue, 2) headache, 3) myalgia, 4) arthralgia. Mental-behavioral symptoms: a) brain-fag b) depression, with or without altered consciousness.

I gather in the data, typing whatever the patient says, without making off-hand interpretations. After about an hour, good clues usually emerge from this narrative, although the cause of the illness cannot be known for certain until actual testing is done.

The medical history is supplemented with forms and tests, such as the Chemical Questionnaire reprinted in Chapter 19. On the basis of the results of the interview, questionnaires, and tests, the patient is then assigned to one of two groups. One group, constituting about half of my referred practice, are patients who are so seriously ill that they must be hospitalized to undergo further testing and treatment. The method of helping such patients is explained in the following chapters. The less severely afflicted, or those who are unable to be hospitalized for a variety of reasons, are diagnosed and treated on an in-office (outpatient) basis.

*92/110/2*

Although the epidemics that have hit Europe again and again for some decades no longer kill as many victims as at first, we must nevertheless regard influenza as a serious disease, especially when we consider its possible after effects. For example, it can cause pneumonia, or an acute deterioration of a chronic liver condition; it may also affect the kidneys, pancreas and abdominal organs. It is also possible for the myocardium to suffer and eczema to break out. Rheumatism can result from an improperly or incompletely treated bout of flu. All these after effects can possibly be prevented if treatment is given until the cure is complete.

*91/28/1*

Connie Mullens was an attractive woman in her early thirties. She appeared to have many of the things which would help to make a person happy: a loving spouse, a beautiful home, a good educational background, and a rewarding job. Yet before she came to the Ecology Unit, she was contemplating suicide. Mrs. Mullens had many illnesses and problems practically all her life, but was completely unhelped by conventional treatment. In fact, her health was endangered by being prescribed amphetamines. Clinical ecology helped her, in part by breaking her dependence on these drugs.

During her childhood, she had had many illnesses, some of them bizarre. She had had asthma so badly that her parents doubted at times that she would live. This problem went away after the family moved to a new house. In high school, she had frequent stomach problems, diagnosed as the result of a “virus.” One such “virus” lasted for over a year.

In college, she demonstrated superior academic ability, got straight A’s most of the time, and was elected to Phi Beta Kappa. Nevertheless, during this same period a curious sort of malaise started to creep over her, imperceptibly at first.

At times, especially in chemistry lab, she would feel a kind of euphoria. She was known as the chemistry class prankster and would devise complicated practical jokes to play on her instructors. Of course, this sort of behavior among college students is “normal” when looked at in isolation. It is only when seen in the context of her overall development, and the onset of her more serious symptoms, that it begins to take on medical significance. In retrospect, some of this behavior may have been a lesser stimulatory reaction (plus-one) to the presence of chemicals and natural gas (in the bunsen burners) in the classroom.

At the same time, Mrs. Mullens had an increasing number of bad days. On these occasions, she had headaches of ever-increasing frequency and intensity. On some days, she could not get out of bed, could not concentrate, and could barely stay awake. To combat these doldrums, she relied on junk food. She would drink cola beverages or eat chocolate and candy whenever she had to “cram” for a test. Every day she would go down to the drugstore and have a chocolate malt and a piece of pie, which seemed to temporarily relieve her tiredness and headaches.

Because she was, not surprisingly, overweight, she consulted an internist, who prescribed diet pills which contained amphetamines. “With these,” she later recalled, “I could leap tall buildings at a single bound.” She stopped taking them when she realized that she was becoming addicted.

Connie was married in college, but the marriage did not work out, This was mainly because of her irritability, she says. She would throw temper tantrums in the house, fling shoes at her husband, or force him to watch his favorite television shows with the sound off (she was very sensitive to noise). She kept on eating, too; her husband called her the “cookie monster” because of her insatiable sweet tooth.

By the time she reached graduate school, her problems were worse. She now had headaches once or twice a week, but each lasted a couple of days. She began to consult doctors, and each had a different diagnosis and solution. One internist, she says, prescribed twenty different pills, mostly amphetamines. She was instructed to try each of them in turn and keep a record of their effects. None of them did anything for her head pain.

She also saw an endocrinologist (hormone specialist), an otolaryngologist (ear-nose-and-throat specialist), and, of course, a psychiatrist. The psychiatrist analyzed her psyche in depth and at length. He came to the conclusion that, as an only child, she had had too much pressure put on her to achieve. In fact, except for her illnesses, she had had a particularly happy childhood. Her parents were both successful and well-educated and probably expected their daughter to be the same, but did not force her to emulate them in this regard.

Connie could not drive an automobile. If she attempted to she became confused and could not interpret traffic signs or even make sense out of a simple stop light. Rather than look for something in the environment (for example, automobile fumes) that might cause such a condition, the psychiatrist interpreted this problem as a psychological need for perfection. He recommended that she relax more.

After finishing graduate school, Mrs. Mullens undertook a job which brought her into contact with industrial chemicals. All of her symptoms worsened. She got married again and gave up the full-time job.

As bad as all these symptoms were, her condition took a sharp turn for the worse (from minus-two or -three to minus-four) when her new home was sprayed with powerful pesticides, inside and out. Winter came, and the gas-fired heater was turned on. Soon afterward she started to feel so weak that she could not get out of bed. She was depressed to the point of dwelling on suicide. Her new husband would come home each day and find her crying uncontrollably.

Her psychiatrist prescribed amphetamines again, this time for ten days, to bring her out of what he called a “short-term depression.” At the end of this period, she was worse and had developed a numbness in her fingers and a tingling in her limbs. To all of her other problems, she now added a fear of multiple sclerosis—an unfounded fear, it now appears.

When she was admitted to the Ecology Unit, her symptoms were particularly bad. The water fast accentuated her symptoms; she developed a terrible headache and cried almost continually at first. After a few days on the fast, however, she underwent a remarkable recovery. “I got completely better,” she recalls. “I became absolutely convinced that my problem was related to the environment.”

Mrs. Mullens reacted to most of the foods she was given. Some brought on arthritislike aches in her fingers and other joints. The worst food for her was beef. After eating a portion of beef, she told the nurse on duty that she wanted to kill herself. She wandered the halls, crying aimlessly. The next day she said that she felt as if she “had been run over by a bulldozer.”

All of her many symptoms were reproduced in several weeks of food testing. What is more, tests with chemicals in various forms showed that this patient had the problem of chemical susceptibility. Mrs. Mullens has made excellent progress in controlling her food and chemical difficulties. “In the real world we face serious problems,” she has said. For example, it is difficult for her to avoid all exposure to natural gas. The gas heater and range have been removed from her house, but she still runs into them in other peoples’ homes, as well as in stores. In certain shops, she becomes so irritable that she feels like strangling those who get in her way. It is only in gas-heated stores that she has this problem. Despite periodic setbacks, her mental state recently has been cheerful.

An understanding of the food and chemical problem has brought with it many rewards. But it also has added responsibilities. Once, when she was in a hospital for some physiological testing, a conventional doctor “caught” her making lists of her reactions to artificially colored and flavored medicine. He actually took papers which she had discarded out of the wastebasket, read them, and remarked, “I see that you are involved with your symptoms. You apparently want to be sick!” When she tried to reason with the man, who was a gastroenterologist, he said brusquely, “I have forty other cases in the hospital. I don’t need you.” To his amazement, she promptly checked herself out of the hospital.

Mrs. Mullens’ case thus represents both the triumph and the tragedy of treatment by the methods of clinical ecology. On the one hand, like many other patients, she was brought back from the brink of suicide by coming to understand the multiple environmental factors responsible for her reactions. She credits it with saving her life. Yet, on the other hand, the world itself sometimes seems hostile to this new approach. Much yet needs to be done to make the environment completely livable for the Connie Mullenses of this world.

In summary, it may be said that the concepts and techniques of ecologic mental illness are opening up new horizons for patients with the symptoms of depression and related psychiatric disturbances. In contrast to the longstanding artificial distinctions between physical and so-called mental illnesses, both physical and cerebral and behavioral manifestations of allergy/ecology represent different levels of reaction. At long last, large sectors of the field of psychiatry are yielding to medical management based on the demonstrability of cause and effect.

*89/110/2*

There are few aspects of having epilepsy in adult life that cause greater distress than the necessary legal restrictions on driving. For some people owning and using a car is a hobby in itself—albeit an expensive one. Others, particularly those living in rural areas where public transport is limited or non-existent, find car ownership and driving necessary for shopping and social contact, and for getting to work. There are jobs such as delivery van driver in which driving is the sole function of employment, and any restriction on driving will cause the employee to lose his job.

This book may well be read in a number of countries, and the legal requirements vary from place to place. As an example, however, we consider the UK eligibility to hold a private (Group 1) driving licence in the UK, as determined by the Motor Vehicles (Driving Licences) (Amendment) (No. 2) Regulations 1994 which came into force on 5th August 1994. Epilepsy is prescribed for the purposes of Sections [92 (4) (b)] of the 1988 Road Traffic Act. The 1994 Regulations amended the 1987 Regulations (which specified a seizure-free period of two years) as follows:

‘An applicant for a licence suffering from epilepsy shall satisfy the following conditions, namely that he shall:

a) have been free from any epileptic attack during the period of one year immediately preceding the date when the licence is granted; or

b) have had an epileptic attack whilst asleep more than three years before the date when the licence is granted and shall have had attacks only whilst asleep between the date of that attack and the date when the licence is granted; and that the driving of a vehicle by him in accordance with the licence is not likely to be a danger to the public.. The purpose of clause (b) is to allow someone to drive who has established a long history of seizures whilst asleep without ever having had any whilst awake. It allows someone with continuing seizures only whilst asleep to drive, without requiring a period of one year free from such a seizure.

These Regulations are, we believe, a reasonable attempt to protect the public from the chances of meeting a driver who is briefly incapable of controlling his car because of a seizure. The Regulations are also fair to those with epilepsy insofar as they clearly state the circumstances under which they can drive.

What actually happens in practice? Take the example of a woman who has held a licence for several years, and then has two grand mal seizures at work within a month. Her family doctor or neurologist will explain that she is no longer eligible to hold a driving licence. It is not the responsibility of either doctor to inform the licensing authority of this, but a doctor will record in their notes the fact that they have explained the position to the patient. It is the driver’s responsibility to take action. Inside each UK Driving Licence is the statement that the ‘Drivers Medical Branch, Swansea SA99 ITU MUST be told at once if: you NOW have any physical or mental disability which affects your fitness as a driver or which might do so IN THE FUTURE’. The patient should write a brief note to the Drivers and Vehicle Licensing Authority (DVLA) at Swansea (the address above being sufficient) explaining the details and enclosing the licence, which will be acknowledged. No further action is necessary.

If all goes well for this woman, and she has no further seizures after the first two, she becomes eligible to hold a driving licence one year after the date of the last attack. She then completes an application form as usual. In Section 6d, or in a covering letter if there is insufficient space on the form, she writes briefly exactly what has occurred, refers to her earlier letter, states the date of her last seizure, and gives the name and address of her family doctor or neurologist to whom reference can be made. After a short interval, she will receive her new licence.

All this seems entirely straightforward, but we know that many people with epilepsy find the Regulations hard to accept. Doctors appreciate the difficulties that may be caused by giving up driving. Driving is usually an essential part of their work, so they do not have to make great leaps of imagination to realize the difficulties that a ban on driving may cause. Unfortunately the law does not take hardship into account. Doctors should, however, not only advise their patients of the law, but also, from their experience, advise patients how to cope with their changed circumstances. Doctors are in a position to influence decisions of employers about the nature of their patients’ work. They can write to the employer, with the patient’s consent, supporting a request for a change of job within the same company. In such a letter, a doctor does not necessarily have to say that the person has epilepsy, only that they are not able to drive for medical reasons, and not likely to be able to drive for some time. Such letters may well influence company decisions. We have known many examples of this. A travelling salesman has become a successful office-bound sales manager; a busy surveyor has taken on increased training responsibilities; and a delivery van driver has been employed within the factory making the goods he was previously delivering. Obviously such changes are easier within large organizations with their greater variety of jobs.

We usually advise people living in rural areas not to move house just because of their new inability to drive. If it seems likely that the seizures can be easily controlled, then it is probably better to cope somehow for the time necessary, rather than disturb the whole family’s way of life. The people with epilepsy are the only ones who can decide whether to move, but their doctors should give them sufficient information about the probability of seizure control to allow an informed decision.

Sometimes people with epilepsy will say that they consider it safe to drive as they always get a warning of their attacks. Leaving aside the legal point—that they are ineligible, and unfortunately their opinion does not count—we explain that the warning is the start of the cerebral events which form the early part of the seizure itself. The fact that to date the progression of the seizure discharge has been sufficiently slow to allow the subject to stop his or her car safely does not mean that this will always be the case. Such a person with epilepsy may well have a sudden grand mal seizure without warning.

Again, people with epilepsy may indicate that they consider it safe to drive, as all their seizures are small ones—perhaps temporal lobe seizures in which consciousness is disturbed in only a minor way. We have to say that the law does not distinguish between the various types of seizures. We also have to say that the next seizure may unfortunately be a grand mal one, and that in any event catastrophe is as likely to be caused by a momentary reduction of conscious awareness as by a major fit.

It is useless for the patient to say to his or her doctor that seizures always occur in the evening, or sometimes even: ‘I’ve never had one whilst driving’, as the next seizure may well be when he or she is in the driving seat.

Sometimes a patient may feel that the events which have led him to the doctor are not epileptic in nature. All a doctor can do in such circumstances is to disagree, and advise that the patient seeks a further opinion. As noted above, it is not a doctor’s responsibility to inform the licensing authority of a person’s epilepsy. It may be, however, that if a doctor is convinced of the diagnosis, and believes that there is a real risk to the public, and if the patient refuses to seek a further opinion, he or she may feel that responsibility to the public at large overrides responsibility to the individual patient.

There are, however, circumstances in which the occurrence of epileptic seizures is not automatically associated with loss of eligibility to hold a driving licence. Clause (b) of the Regulations quoted states that an applicant shall ‘have had an epileptic attack whilst asleep more than three years before the date when the licence is granted and shall have had attacks only whilst asleep between the date of that attack and the date when the licence is granted’. There are some people, though not many, who only have fits during sleep; three years seems a reasonable period to allow one to see if that is the case. After that, even if attacks do occur in sleep and never whilst awake, a person can nevertheless drive.

*83/188/2*

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.

*82/188/2*

Most children with epilepsy attend normal mainstream schools and can participate fully in the schools’ curricular and extra-curricular activities. This is the case even in children in whom the epilepsy is not fully controlled. It is important for the teachers and for the school doctor and nurse to know that a child has epilepsy—even if the child’s seizures are at the current time controlled. Teachers will then know what to expect and what to do if the child has a seizure. The teacher may also involve children in the class in the care of the child after a seizure; this is important for two reasons. First, it teaches children how to help someone in a seizure, and secondly—and perhaps more importantly—it shows children that there is no need to be scared or upset when someone has a fit. Hopefully, such activities may reduce, in future generations, some of the misunderstanding and social prejudice which surround epilepsy.

About one fifth of children with epilepsy are not able to attend a normal school. This may simply be because of different and frequent seizure types which are not fully controlled. However, the more common reason for these children not being able to attend a normal school is that they have additional problems, such as moderate or severe learning difficulties or physical handicaps (or both), as well as their epilepsy. Most of these children will attend special schools, usually within the local neighbourhood. In this situation in the UK, under the terms of the Education Act, the child will have an assessment or ’statement’ made of his or her educational needs so that the most appropriate school can be found. This statement is based on reports from doctors (including the hospital doctor), teachers, clinical psychologists, therapists, and any other specialist who may have been involved with the child. The ultimate decision as to which school the child should attend rests with the parent.

Perhaps 1-2 per cent of all children with epilepsy may need to attend a school specifically established for children with epilepsy. These schools are usually residential or boarding schools, and the staff have special expertise in teaching children with epilepsy, in coping with their seizures, and in generally supporting them. One of the additional benefits provided by these schools is that they allow separation from the family. The benefit of this lies in the

over-protective attitude of many parents who do not allow their child the opportunity to participate in normal social activities. This clearly may not be in the child’s best interest with regard to either control of seizures or enabling the child to ‘grow’ into adulthood and to develop a degree of independence. The environment provided by these schools encourages self-reliance.

Occasionally, a child with epilepsy, although not having frequent seizures, may be doing badly in school. Rarely this is due to the fact that the child is experiencing many more absences or complex partial seizures. These may actually be first picked up by the child’s teachers. In these situations, an EEG may help to confirm that the child is experiencing frequent seizures. Another rare possibility—but one that is often put forward—is that the child’s poor school work is due to the effect of the anti-epileptic drugs. However, if the child is not excessively sleepy or drowsy, then it is most unlikely that the drugs are interfering significantly with school work. Exceptions include phenobarbitone and phenytoin, which may affect a child’s concentration and therefore their learning potential. In these situations the amount of drug in the blood may need to be checked. The most common reason for learning problems in a child with epilepsy is that the intellectual difficulty and the epilepsy share a common cause due to abnormal development of the brain or brain damage (for example, after meningitis or a head injury). In these situations, an educational psychologist will assess the child’s strengths and weaknesses and advice on the most appropriate school. Sometimes the cause of the child’s learning difficulties may be familial—that is, other family members show similar educational problems which has nothing at all to do with the epilepsy.

Children up until the age of 16 years are well cared for by society, educationally and medically. The difficult time comes after the age of 16 years—the ‘adolescent’ period which, brings changes in social, family, and educational life. This is often a difficult time of life, even for those who do not have epilepsy.

Many changes occur at adolescence which need to be coped with.

• The seizures may change in type, particularly if the epilepsy started at a young age. These changes may include more complex partial and generalized tonic-clonic seizures, and a reduction in absence and myoclonic (jerk) seizures.

• The anti-epileptic medication may have to change in order to maintain control of the epileptic seizures. This may mean a change in dose or even the introduction of different drugs.

• Young people may find it difficult to take their anti-epileptic drug regularly, or they may deliberately decide not to do so. This is more likely to occur in teenagers who have recently been diagnosed and who may find it difficult to come to terms with the diagnosis and need for regular treatment. This may be just one part of a general rebelliousness—against the condition, the treatment, the doctor, family and friends, even life itself. The best way of dealing with these understandable reactions is for the young person to talk about their epilepsy and all its associated problems. Friends may or may not be the easiest to talk to, but hopefully the young person will discuss his or her feelings with the rest of the family and with an understanding doctor.

• There are a number of educational possibilities beyond the normal school leaving age. Many young people with epilepsy will obtain higher qualifications at school and then obtain a place at college or university. It is important that college or university tutors and examiners are told about students who have epilepsy as this promotes and encourages increased awareness and understanding. Those students who live away from home in halls of residence or in rented accommodation should tell friends and college or university tutors.

• Most paediatricians would not think it sensible to continue seeing patients over the age of 16 years. Teenagers of 17 or 18 years have questions and needs that reflect his transition to adult life. All too often transfer from paediatric to adult services in poorly planned. The family doctor will continue his or her support, but consideration of course should be given to transferring care to a neurologist who has a special interest in epilepsy. A special clinic for teenagers with epilepsy has been established in Liverpool to ensure that there is a smooth handover of care from a children’s epilepsy clinic to an adult clinic, and in which the specific issues and problems of teenagers can be dealt with satisfactorily.

• There are many changes in life style at adolescence, with different interests and activities and different sleeping patterns, and it is known that deprivation of sleep and alcohol may precipitate seizures. These activities are important in developing independence and self reliance. There are few activities which young people with epilepsy cannot undertake.

An occasional drink containing alcohol is unlikely to be harmful. However, alcohol can make anti-epileptic medication less effective and may, in excess, bring on a seizure. It is important to get the balance right—and this applies to the correct amount of sleep and appropriate diet, as well as the amount of alcohol that is drunk. Medical research suggests that drinking more than two units of alcohol in less than 12-15 hours may significantly increase the risk of seizures in patients who have epilepsy (2 units = one pint of beer, lager, or cider, or 2 glasses of wine, or two measures (’shorts’) of spirits such as whisky, rum, vodka, or gin).

• Contraception will also begin to emerge as an important issue during this time. The most effective form of contraception is the pill. The oral contraceptive pill does not make epileptic seizures more or less likely to happen and there is no reason why women with epilepsy cannot take the pill. Certain anti-epileptic drugs (except sodium valproate and the newer ones including vigabatrin and gabapertin) may reduce the contraceptive efficacy of the pill, resulting in an unwanted pregnancy. A contraceptive pill with a high oestrogen content may need to be prescribed, but other forms of contraception (condom or cap plus spermicide) should be considered.

*77/188/2*