'I still think in terms of not seeing my children grow up'

Last week Lesley Cannon won a landmark case after doctors missed cancer on her smear tests. HESTER LACEY met her
In 1996, Lesley Cannon had major surgery: a radical hysterectomy to remove advanced and invasive cervical cancer which had spread throughout her womb to her stomach. When she came round from the operation, in great pain, one of the first things her husband Paul handed her was a letter from Kent and Canterbury Hospital. The letter blandly informed her that her previous smear tests, analysed at the hospital, had been re-checked and that they were delighted to inform her that she was healthy - that there was no sign of cancer.

It was the final straw for the Cannons, yet another gross error made by the hospital. The Cannons already knew that the extent of the cancer found in Lesley's body indicated that it had been there for years, despite numerous "clear" smear test results. They decided to find themselves a solicitor and take the hospital to court. Last week, Lesley Cannon, and two other women, won a landmark case for negligence against the hospital - a case which highlighted the nationwide shortcomings of the cervical cancer screening programme.

Lesley, now 39, and Paul, 33, could hardly believe it when her illness was diagnosed. Lesley had conscientiously kept her routine smear test appointments. She was aware of the risks of cervical cancer and the importance of regular smears. A smear involves taking cells from the cervix, the neck of the womb, and inspecting them for early signs of cancer. Kent and Canterbury Hospital had been reading Lesley's smears since the mid- 1980s and had always passed them as clear. It was not until the family moved to another district and another hospital analysed her tests that any abnormality was detected. By then the cancer was so advanced as to be life-threatening.

Lesley's little daughter, Melissa, was just 14 months old and her small sons, Sam and Michael, were three and two when the cancer was diagnosed. By then, Lesley had been feeling ill for some time. "I knew something was wrong. My periods were getting longer and longer and heavier and heavier. I had to keep cancelling work. I was given tablets that would stop haemorrhaging but they didn't stop it or even slow it down. And I was so exhausted. I would sit and cry because I was so tired. They said it was depression but I knew I wasn't depressed - I was tired. I had lots of different tests but they couldn't find out what was wrong. And I had constant backache - I put it down to having so many children." (She also has four grown-up children from a previous relationship.) Paul was regularly coming home from work and finding Lesley in tears; she felt so bad that he often had to cope with housework and the children.

This went on for months. Then the Cannon family moved to Sheerness-on- Sea, and Lesley's 1996 smear, where abnormal cells were first detected, was read by a different hospital. Initially she was not unduly worried; she knew that minor abnormalities are not necessarily a sign of cancer. But then she was asked to come immediately to the hospital. "The doctor said it was malignant, it was cancer, I needed an operation. I said I didn't want a hysterectomy because the kids were too young, and they said I didn't have the choice, without it I would die. The cancer had gone too far." Driving home in the car, she broke down in tears. Paul was devastated too. "I just couldn't contemplate the fact that it was cancer," he says. "I thought we were too young."

They had been married for six years. Lesley, vivacious and attractive, and Paul, quieter, both worked as civil servants. They had already faced problems. Lesley had difficulties conceiving their oldest son, and had two miscarriages and an ectopic pregnancy before he was born. The next two children had followed in quick succession and their old home had become too small. Their new home was meant to be a new start and Lesley had started decorating enthusiastically.

The effect on the family was devastating. Lesley stopped sleeping. "I was having bad dreams about dying. After the operation I was in even more pain. I was taking painkillers all the time, and I was completely spaced out." She could hardly lift her baby daughter into her cot. Once an emergency doctor had to open up a chemist's shop in the early hours to get a supply of painkillers. And she had started drinking heavily to dull the pain.

This went on for over a year. Paul was juggling his job with trying to cope with chaos at home. "I'd be looking after the kids while she went to the pub," he says. "It would get to midnight and she wouldn't be home." Once Lesley blacked his eye. "She went berserk. It was awful. I still get very emotional about it and feel guilty because at one stage I wished her dead. I can't begin to think what Lesley was going through but at one stage I didn't care."

Through his work, Paul found a counsellor who helped him a great deal, and Lesley was eventually referred to a psychiatrist. She got her drinking under control, and was prescribed Prozac, which she is still taking. "I don't know how we got through it all," says Paul. "But we did. It has made us stronger. Little worries don't compare to what we've been through."

Last Monday, along with two other women who had also undergone radical hysterectomies under similar circumstances, Lesley won her case. The High Court judge ruled that Kent and Canterbury Hospital had been negligent in not referring them for follow-up examinations after their smears showed borderline abnormalities. The test case paves the way for other women wrongly told their results were negative when in fact abnormalities should have been spotted in the first place.

Sarah Harman, Lesley's solicitor, has been consulted by 100 women over screening at Kent and Canterbury Hospital, and has taken on 76 cases, of which 45 have already been settled out of court. The hospital has already paid out a total of more than pounds 1m in compensation. "Medical negligence cases are usually settled out of court," she says, "because of the embarrassment they cause to hospital trusts. I believe that in this case the National Health Service Litigation Authority was trying to draw a line to regulate what degree of abnormality women can expect to be found in a smear test, and draw that line as low as possible from their point of view."

The testimony of experts, she says, has highlighted huge differences in what the cytoscreeners who scrutinise the smear slides around the country are expected to pick up. "One expert may classify a slide as showing significant abnormalities, others may say they would not expect their screeners to pick that up." Cytoscreeners should not be responsible for diagnosis. "If anything is even slightly untoward it should be brought to the attention of someone more senior. The Kent and Canterbury cytoscreeners were left without the supervision, training and support that were necessary." And, she adds, GPs place too much faith in the cervical smear programme. "Several of my clients have been let down by doctors who have said their symptoms might be this, might be that, but can't be cervical cancer because they have had clear smear tests. Then they have been diagnosed with invasive cancer."

Cervical cancer is the most common cancer in women under 35. A rarer version, adenocarcinoma, affects more younger women, and is on the increase: it now constitutes up to 20 per cent of all cervical cancers. All three women in last week's case had adenocarcinoma, which is difficult to identify early on. Says Harman: "If a hospital trust can miss a diagnosis of this kind and say 'It was adenocarcinoma, you can't expect our screening to pick it up', that leaves a group of women very vulnerable, particularly as women are putting off having children until they are older and treatment involves hysterectomy."

Kent and Canterbury Hospital still has to decide whether to appeal. Harman says this would be a huge waste of NHS funds. "The costs of an appeal would be far more than the cost of compensating the case." It is possible that the hospital's decision will be coloured by fear of future litigation. "If that happens," says Harman, "it will be a great injustice."

Compensation is expected to be in the region of pounds 30,000 for each woman. However, the cash, says Lesley, is not the point. "We were so happy about the case, but it was never about money." Her life has been altered for ever. She is currently waiting for the result of another smear. "When you have cancer there is a one in three chance of it coming back. If I start hurting I think mine has come back. It's scary. I still think in terms of not seeing my children grow up."