Pegging down pesticides - an interview with Enfys Chapman
"Chemicals might be used safely in a perfect world, but in real life incidents do happen, and there can be dire results." These words, and much comforting, practical advice, have for the last ten years, greeted thousands of people, their health blighted by pesticides, who have had to turn to Enfys Chapman for help. Founder of PEGS, the support group for pesticide exposure victims whose work the Pesticides Trust [now PAN UK] has recently taken up, Enfys knows at first hand about dire results. Alison Craig reports.
So severe was her own exposure that, of six people who are known to have been exposed to the same amount of organophosphates (OPs), Enfys is the only survivor. The other five died within twenty-one days.
On 14 July 1977, a helicopter flew over Enfys and John's farm in Cambridgeshire, spraying her and her cattle with the organophosphates triazophos and dimethoate. Five days later, Enfys was admitted to a Cambridge hospital suffering muscular spasms so violent that they threw her from her bed. For four years she was critically ill, experiencing convulsions and agonising cramps, stroke-like paralysis, and the partial loss of her sight. For over twenty years, she has been subject to bouts of illness caused by re-exposure, and her life has been, as she puts it 'like walking a tightrope'.
"I am only affected by re-exposure to the same group of OPs as my original exposure", she says. "I find I can't focus my eyes, and I have the same head-ache, beyond migraine. If it's bad I get maniacal spasms, which are treated with valium. I recover over about six weeks. Then I find after that that some part of my disability has improved: the body burden of OPs that I carry has changed. The theory is that the last area to clear is the fat in bone marrow."
"My husband who, from having a healthy, vigorous and relatively youthful wife, was left with a permanently disabled partner for several years with no hope given of recovery, other than it might be ten to twenty months, or ten to twenty years."
So perhaps her greatest achievement has been simply to survive. She has lived, but she has also lived to tell her tale. For in Enfys there is a resourceful and tenacious campaigner, someone whose abilities have allowed her to fight her way into the records, and into the offices of people who should have been helping. Unlike most OP exposure victims, Enfys has not remained in the silent minority.
"Unlike other less fortunate sufferers, my scientific and business experience enabled me to have the knowledge of what and where questions should be asked", she says. "My subsequent efforts to find things out and obtain recognition and compensation for loss were hard enough, but others who had been exposed insidiously without prior information in the first decades of OP use had no such back-up."
"My experiences were probably much less traumatic than those whose condition advanced on them like a thief in the night, but it does mean that I can empathise with them and appreciate their feelings of disillusion in the national institutions that are supposed to protect its citizens. Is it any wonder that they feel that they have been betrayed by the agricultural establishment, the medical profession, and the government?"
Since July 1988, when the Chapmans first formed the Pesticide Exposure Group of Sufferers (PEGS), they have received over twelve thousand calls. PEGS was so named to give a hint of their purpose in providing something for victims to hang onto, often in very distressing circumstances. The need which she and her co-founders, Frances Boulton and Heather Cameron, recognised was for an understanding ear, reinforced by personal experience of battling with traumatic events and often unsympathetic professional attention.
Ten years on, Enfys has accumulated a profound knowledge of the issues, a network of sympathetic medical professionals, a place at the centre of the pesticides debate, and a vast collection of records, in the form of a database (though only callers who wish to be are entered on it). As Professor H Woods, chairman of the Committee on Toxicity (COT), which is currently scrutinising OPs and human health, said during a recent meeting: "There may well be a kind of sub-culture of people whose exposure to OPs has left them incapacitated so that they do not enter official records, and your database will be invaluable in bringing them to light."
Enfys continues to be a trenchant spokeswoman for exposure victims. Her participation on the working party for the recent Royal Colleges of Physicians and Psychiatrists report on long-term, low-dose OP sheep-dip exposure ensured that victims themselves were seen and heard, and, in the report itself, their experiences were acknowledged as unquestionably genuine.
What she lends to the debate is a down-to-earth knowledge of practical realities. Of sheep-dip victims she points out: "The Health and Safety Executive (HSE) were loath to act until 1994, and even then were still threatening dippers with legal action for misuse of dips. Sufferers were afraid to make their medical histories known because of fear of losing their motor vehicle licence, or in some cases their heavy goods licence, and in many instances accepted a diagnosis of Parkinson's Disease in order to keep their licence, obviously regarded as essential by some farmers in remote areas."
She says of OP poisonings: "Sheep-farmers are in fact, only a minor part of the problem. There are many more people who have been accidentally exposed in the home, or by agricultural sprays. There can be ill-considered use of headlice treatment in conjunction with other products, for example. People treat their children's headlice, and their pets, and their furniture, all at the same time. The doctors don't ask what else has been going on, and the vets don't ask what the doctors have done. We have heard about six children who were treated for headlice and roundworms (with an OP worm-remedy) at the same time, and they're still affected."
It is shocking cases like these which can, through the scepticism of doctors and the HSE, fall through official nets, and Enfys has had to deal with them over the years. She tells of another PEGS record, a community in which, one after another, six women had spontaneous abortions linked to OP use locally, and a search of the records revealed a history of spontaneous abortions in the village.
She has, remarkably, succeeded in maintaining a friendly dialogue with the regulatory agencies, such as the HSE, while remaining one of their fiercest critics, though she says they have improved.
"When we started, there were about nineteen out of thirty regions of the HSE who we were worried about; now there are about three", she says. Her account to the COT committee of what happens when the HSE do not observe confidentiality gave her listeners an insight into some of the reasons why pesticide exposure cases remain vastly under-recorded.
"There was an exposure case on the Isle of Wight (off southern England), and we found out that a letter from the victim had been passed on by the HSE to one of the farmers. In another case a woman, who was confirmed by the National Poisons Information Service as having been exposed to OPs, had the sprayer himself and two heavies turning up on her doorstep to say he had not sprayed OPs, he'd only been spraying wet turnip seed. She was a woman in her seventies living alone. When you tell the HSE about intimidation, they don't believe you."
The greatest problem which remains for pesticide exposure victims is that there is simply no widely accepted medical diagnostic test. In 1990, Enfys initiated a serious attempt to obtain one, to be available to all exposure victims through the NHS.
PEGS lobbied parliament to highlight the need, and an Early Day Motion was signed by hundreds of supportive MPs. Although reassurances were made in the House of Commons, there has been little progress.
Those researching it, such as Dr Goran Jamal, are close to or at the goal, but their efforts are under-funded. The establishment seems to have found it easier, rather than challenge the enormous interests which pesticide acceptance represents, to deny that the problems occur.
"My exposure was fortunately recognised by most of my medical advisers and I have been sympathetically treated throughout many setbacks", says Enfys. "Some of the other consultants whom I have seen along the way have not been so helpful, and until recently it was impossible to find a consultant willing to put down on paper a definitive diagnosis. Comments which have sometimes been made by consultants are often retracted when written confirmation is requested."
"When patients are fortunate enough to be referred by their GPs to a consultant in any part of the country they are liable to be told they are suffering from a psychiatric condition, and at the present time there are people sectioned under the Mental Health Acts because they insist their condition is attributable to OPs. The retraction of this belief is a condition of their release."
"Doctors are now thankfully more aware of the effects of OPs on the human body, but how many junior doctors and GPs have time to become informed about them, or to remember the thirty minutes or so tuition about pesticides that they received in medical school?"
Enfys cites the effort she once made, at the request of Advisory Committee on Pesticides, to report a link between carbaryl and birth defects. It was thwarted because the GPs involved, fearful of legal action, would not disclose medical records, which would, perhaps, have revealed incorrect diagnoses.
She also contributes to the debate whenever she can, and has most recently passed on to environmental groups information on health problems suffered following exposure to glyphosate.
"The information I have read so far does not answer the most pressing question for me and all the sufferers known to PEGS who have been sensitised to OPs, and thereafter suffer adverse reactions when they come in contact even with small quantities of OPs", she wrote recently. "We have found the greatest incidence of pesticide exposure in the past two years has been to OP head-lice treatment, closely followed by accidental exposure to glyphosate, which is widely used by farmers and local authorities to control weeds."
"To avoid unnecessary adverse reactions it would seem to me that adequate research into possible ill-effects should be put in train before-not after-the products are released onto the market."
Enfys and John Chapman retired from PEGS in October 1998, although Enfys still provides invaluable insights and support to Alison Craig, the Pesticides
Trust Project Officer who has taken on the work.
[This article first appeared in Pesticides News No. 43, March 1999, pages 14-15]
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