In memory of Alice
It was the night before her mock GCSEs at Urmston Grammar School in Manchester that 15-year-old Alice Kilvert complained of a headache. Her parents Jenny and Peter weren't unduly concerned and saw her off to school the next day. Thirty-six hours later, while her schoolmates were fighting the butterflies in their stomachs before their next exam, Alice was fighting for her life in intensive care. She lost the fight.
Doctors unequivocally cited Toxic Shock Syndrome (TSS) as the cause of death. Alice had been menstruating and using tampons when she became ill.
Six years on, Alice's geology teacher mother is an expert on Toxic Shock Syndrome. Since they lost their daughter, she and Peter have been collecting information about TSS from medical experts and survivors of the disease, adapting it into digestible form for school nurses and teachers, and disseminating it from their home. She has made a video, taken on the manufacturers of tampons to make their information to users more readable and works tirelessly for a Tampon Safety Bill to be introduced in Parliament.
Jenny set up the Alice Kilvert Tampon Alert as an information service and campaign "almost immediately after Alice's death. We wanted to use her story to warn other people."
But there are no "shock horror" warnings. "We've been very careful about how we present information," says Jenny. "We don't want to lose a dialogue with people who want to use tampons. So we're not saying 'don't use tampons because my daughter died', because people wouldn't listen and nobody likes being told what to do. Instead, we tell the facts and how to minimise the risks, and then let them make up their own minds."
The risks are small - and figures are difficult to establish since TSS is not a notifiable disease. But according to the Public Health Laboratory Service there are around 40 cases in the UK each year. Only 18 are "confirmed" or "probable", and, of these, two or three are fatal. Sixty per cent of TSS sufferers are under 25.
Dr Sarah Brewer of the Toxic Shock Syndrome Information Service - funded by tampon manufacturers - says only half the total cases are associated with tampon use. The others, affecting men, children and non-menstruating women, are the result of burns, boils, insect bites or surgery. The disease is caused by toxin-producing strains of the staphylococcus aureus bacterium, harboured in the bodies of between 4 and 10 per cent of people.
A 1986 paper in the US Journal of Adolescent Health Care by Dr Lawrence D'Angelo offers insights into the possible dangers. "Teens who use tampons have a risk of TSS that is greater than women who are older and use the same feminine hygiene products," he says.
Research cited in the Toxic Shock Syndrome Information Service literature says that between 5 and 15 per cent of 10 to 19-year-old girls have low levels of antibodies to the toxins produced by the staph bacteria.
Jenny Kilvert is clear about what the data means in real terms. "For a lot of young women, tampons will be safe to use. But for some girls, using one for a couple of hours will set off the toxic reaction because they don't have immunity."
The Kilverts and their campaign partners, the Women's Environmental Network, are concerned at the targeting of young women by tampon manufacturers, with adverts showing tampons as the great liberator of young womankind - day and night. "The evidence shows that the higher the absorbency of tampons, the higher the risk," says Jenny. The Toxic Shock Syndrome Information Service recommends that women use the lowest absorbency tampons suitable to their needs. It says that the risk of tampon-related TSS rises with greater tampon absorbency. "But in the UK, absorbencies aren't standardised," says Jenny Kilvert. "Our campaign believes that, to minimise risk, you should change a tampon every four to six hours - including the middle of the night - and use the lowest absorbency possible."
Evidence from Dr Jeffrey Parsonet of the Dartmouth-Hitchcock Medical Centre in Lebanon, New Hampshire, also indicates that continuous tampon use over 24 hours increases the risk In other words, if you use a tampon at night, you should use a sanitary towel for part of the previous and following day.
Jenny Kilvert took early retirement last year and now works as a part-time supply teacher. Yet she is busier than ever. She gets up to a dozen requests a week for leaflets from health promotion units working in primary and secondary schools as well as from individuals. And then there is the campaigning work.
Last week she met Tessa Jowell, Minister of Public Health, who will now speak to tampon manufacturers about the use of all-night tampons. Her department will also be liaising with the Royal College of Obstetricians and Gynaecologists to confirm the medical profession's view on all-night tampon use.
The campaign is an important part of Jenny's life. "This has certainly been therapeutic for us," she admits. "It allows us to talk about Alice, to keep her spirit alive. Through the campaign I've gone to places and met people I would have never met before.
"Every year, we have a party on Alice's birthday with TSS survivors and the families of those who haven't survived. But I try to make sure the campaign doesn't take over every single minute."
For details of resources, contact Jenny Kilvert, Alice Kilvert Tampon Alert, 16 Blinco Road, Urmston, Manchester M41 9NF