While few can doubt the necessity of a national cervical screening service, many have come to question its reliability. This has particularly been the case since 1996, when the alarmingly poor standards of the Kent and Canterbury hospital's cytology laboratory came to light. Ninety-one thousand smear tests were reviewed and 400 women, whose test results had previously been reported negative, were recalled for treatment. Following the William Wells Inquiry and Report in 1997, the Kent and Canterbury hospitals NHS Trust conceded that the screening failures "may have contributed to" eight deaths and 30 hysterectomies. In the end, the Trust paid out more than £1 million in damages.

In the history of cervical screening in this country, this episode is an important watershed that has thrown several important issues into focus. Not only did it reveal the low standards and poor working conditions of a particular laboratory, it also raised questions about the standards of the screening service in general, the amount of information available to women and, furthermore, the attitudes and uncertainties surrounding the provision of women's health care. The case of Helen Palmer, Lesley Cannon and Sandra Penney, was particularly significant. These women had all had regular smear tests, in which no pre-cancerous cells were detected, but all three developed cervical cancer. In 1999, they won their case against the hospital, which had refused to accept responsibility for them because the signs of cancer in their smears had been too slight. This highlighted the varying standards and thresholds of abnormality being employed in the screening programme and, moreover, the limited information women have about smear results and the failure rates of screening. In the best laboratories, tests are 90 per cent accurate in detecting signs of cervical cancer. While NHS leaflets do now make clear the limitations of screening, women are still not being given enough detailed information regarding what their individual tests actually show. Negative tests are not always entirely free of minor abnormalities, but these are often left uninvestigated and undisclosed to the patient who assumes they have been given the "all clear".

However, in the wake of Canterbury and further disclosures about screening failures, such as the audit carried out by the Leicester Royal Infirmary last year which revealed that out of 324 women who developed cervical cancer, 122 had received at least one smear test result which was negative or did not reflect how far the disease had developed, "women are now asking more questions". Sarah Harman, the lawyer who represented the three women in the Kent and Canterbury case, has witnessed this. Previously a childcare lawyer, Harman thought that after the Kent and Canterbury scandal, she would be able to return to her former work. While she agrees that the case set new standards for screening, she has since been inundated with women's health cases, 200 of which have concerned cervical screening errors from all over the country. Harman asserts that her job would not be necessary if good practice was followed in the NHS programme: "If a woman develops cervical cancer, it is good practice to review all her smears and investigate why it wasn't picked up.” After all, if these women have had regular smears, this is a question that they are bound to ask and that deserves to be answered. According to Harman, women come to her because the NHS complaints procedure has failed and she often advises them to have their smears reviewed by an independent pathologist. While she agrees that some cases are difficult to pick up, the fact that there is a 10-15 year pre-invasive phase for cervical cancer necessitates at least this much scrutiny.

While recognising the constant need for improvement in the screening programme, Harman relates its problems to a poor overall standard in women's health provision. Women are not listened to by their GPs, which often contributes to the avoidable worsening of cervical cancer cases. If a woman's last smear test was "clear", their case is often ignored by their GP.

That this culture of not listening to women and taking their complaints seriously is still widespread, is exemplified by the story of Elaine Davies, a 36 year-old mother of two who lives in Yorkshire. Elaine was always regular with her smears, often calling the surgery herself when she felt her next test was due. Last September and October, she experienced pre-menstrual bleeding and went to see her GP, who said it was an infection and told her to come back in 5 weeks time. She then began to experience post-coital bleeding and cramps and returned to her GP's surgery where the locum on duty told her it was probably her hormones and that she should consider changing her pill. Extremely dissatisfied with this and convinced that her problem wasn't merely hormonal, Elaine saw her GP again and demanded to be referred to a specialist. To avoid the waiting list, she decided to pay and was able to get an immediate appointment.

Having been told by her GP that she did not need another smear test, as it had only been a year since her last, which had been clear, she was now given another and cancerous cells, which had spread to her womb, were discovered. She now needed a hysterectomy, but again was faced with an indefinite waiting list. After some consideration, Elaine again decided to pay for private treatment. The cost finally settled on was £6000. She has recently completed a five-week course of radiotherapy, for which she had to wait two and a half months.

Following her operation, Elaine wrote a letter of complaint to her GP, who apologised for the mistake. It was also at this stage that her GP drew her attention to a checklist of five criteria for referral. Being in the age bracket (36-7) considered to be at greatest risk from cervical cancer, and having experienced both mid-cycle and post-coital bleeding, Elaine matched 3 of the five. She was told that patients matching one or more of this criteria are meant to be to be referred. Current NHS leaflets on cervical screening emphasise that women who experience "unusual symptoms, such as bleeding after sex or between periods" should see their doctor. This implies that there is cause for concern over such symptoms and a protocol is in place for immediate investigation when a GP is informed.

However, Elaine's grievance is less with her GP than with the NHS: "To be fair to my doctor, I think I wasn't referred because they are only 'allowed' to refer a certain quota of women. I am not a great fan of the NHS. I have worked since the age of 16 and paid my stamp, but when my time came it let me down". Her distrust has become so great that she believes that even if her hospital were to review her smear slides, which her lawyer has been requesting without success since April, they would not be honest about any previously detectable abnormalities. Again she has decided to pay for answers, and has agreed to have an independent pathologist's review at the further cost of £500. She wants to put this part of her life behind her, but will always be wondering if her cancer could have been prevented or at least detected at an earlier stage: "I need to know for my own peace of mind. If I find I do have a case, I will take it further. I am luckier than a lot of women who don't survive this, but that is because of my own pushiness and the fact that I paid lots of money when I shouldn't have had to."

Before this experience, Elaine, like many women, was unaware of the failure rates of smear tests or the different standards of labs across the country. Like most she placed her trust in the system, doing only what she thought was necessary to stay protected against cervical cancer. The relative "success" of her case is due to the fact that she responded to her body and persisted in that response. Furthermore she was able to pay for private treatment. She is still a strong believer in screening, but worries that women are not given enough information about the process or their results. She has had to educate herself, mainly through her contact with other patients and searching the internet. One particularly helpful website is that of the Juliet Trust, which was founded in the wake of the Kent and Canterbury disaster by three of the victims of the screening errors and Sarah Harman. This extensive site provides detailed discussions about cervical screening and cervical cancer, while also advocating improvements in the screening programme and the user's access to information. It offers a necessary forum for women who, like Elaine, are feeling the increasing need to recognise what is normal and abnormal for their own bodies and act on it.

The number of legal cases regarding screening errors appears to be increasing but, as Harman states, compensation amounts are not usually that much and cannot make up for a woman's inability to have children. This is perhaps one of the most painful consequences for young women who develop cervical cancer before they have had a chance to start a family. And as women in their mid-thirties are most at risk, chances of this are high.

Despite its tragic consequences, it would have been a greater comfort if the Kent and Canterbury disaster had been a one-off aberration. But scandals such as these rarely are. It would be easier to point the finger at individual health care professionals or practices, but the issue is broader than that. While Elaine's case has yet to be fully investigated, it reveals what is still largely wanting in the screening service, in terms of research, technology, funding and the provision of information. Equally, there is clearly room for vast improvement in the practice of responding to women's health worries and the questions they are bound to ask when things go wrong.