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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