'The errors that cost me my life'

Kathleen McGovern has worked for the NHS all her life. But now she blames the system for the cancer that is killing her, she tells Hester Lacey

Kathleen McGovern is dying. She has between three and six months to live. The advanced cervical cancer that is killing her leaves her in constant discomfort, unable to sit or lie in one position for more than a few moments. A few weeks ago, in a final attempt to save her life, McGovern, 49, agreed to a radical form of surgery called a pelvic clearance; this would have meant removing all the organs within her pelvis, including bladder and bowel. But when McGovern was on the operating table, the surgeons discovered that the cancer had spread too far for even this drastic measure to be any use. Now she has no hope left at all.

Kathleen McGovern is dying. She has between three and six months to live. The advanced cervical cancer that is killing her leaves her in constant discomfort, unable to sit or lie in one position for more than a few moments. A few weeks ago, in a final attempt to save her life, McGovern, 49, agreed to a radical form of surgery called a pelvic clearance; this would have meant removing all the organs within her pelvis, including bladder and bowel. But when McGovern was on the operating table, the surgeons discovered that the cancer had spread too far for even this drastic measure to be any use. Now she has no hope left at all.

Most women who find themselves in this terrible situation are those who haven't bothered with regular cervical smears. Detected early enough, the initial stages of cervical cancer are straightforward to treat. McGovern was very aware indeed of the advantages of regular screening. She is at the top of the nursing profession, working until recently as a nurse consultant. She has always had regular smear tests. "I didn't miss any smears," she says. "I thought that if I had smears that were negative, I didn't have anything to worry about."

So what went wrong? McGovern had a smear test early in 2000 at Kingston hospital. The test was registered as "borderline", which means that while there is no immediate cause for concern, careful monitoring is needed. It was recommended that she have another test in six months' time.

Her next test, carried out by Ashford and St Peter's Hospitals NHS Trust in Chertsey in July 2000, came back as negative. A subsequent test, also carried out at Ashford and St Peter's in August 2001, was diagnosed as "borderline". In January 2002, another test, this time at St Helier hospital in south London, was reported as "negative". Two borderline smears would have rung alarm bells; the alternating borderline and negative results meant that McGovern was not referred to the specialist who could have saved her.

Eventually, McGovern went to see her GP; by now she had symptoms that were worrying her. It was suggested that she might have fibroids, which are uncomfortable but benign, so she wasn't unduly worried at having to wait 11 weeks to see a gynaecologist. But once she saw the gynaecologist, everything suddenly changed. "As soon as the doctor started to examine me, I could tell there was something wrong," recalls McGovern. What was wrong was an advanced case of cervical cancer; one that had not been picked up on any of McGovern's previous smears.

McGovern was, of course, shocked and distressed at her diagnosis. At this stage, she had no thought of any kind of litigation; she felt it was quite possible that she had just been terribly unlucky. She did, however, want to know exactly what had happened. The NHS code of good practice in such situations suggests that all previous smears should be looked at again, by the hospital that screened the most recent cervical smear prior to diagnosis.

"The trouble was that nobody seemed to know what should be done to get a review," says McGovern. "The first doctor I'd seen hadn't believed I could possibly have had normal smears leading up to the diagnosis. So I wrote a very polite letter to the chief executive of the last hospital who had tested me, St Helier, and asked them to review my tests in the light of the diagnosis."

McGovern then went through a gruelling course of radiotherapy and chemotherapy at the Royal Marsden hospital that made it difficult for her to follow up her initial approach. Eleven weeks later, St Helier finally responded; not to McGovern, but to their own patient help officer. The brief letter that was sent included a copy of the official guidelines, and said that McGovern's former consultant would be happy to have an "informal chat" with her current doctor, but that he had been "too busy", due to work and holidays, to review her tests.

McGovern has worked in the NHS all her life. But she was so infuriated by this response that she decided to put her case in the hands of a lawyer. It wasn't money she was after. "At this stage all I wanted was access to independent expert opinion; and I still thought I might well find that my smears had been read correctly. If they hadn't been so damned difficult about setting up a review, if they had responded as they should have, I would have left the process in their hands."

McGovern contacted Sarah Harman, a campaigning lawyer with a history of success in misdiagnosis cases. Kingston hospital, and Ashford and St Peter's hospitals were similarly slow to relinquish McGovern's slides, but eventually all the hospitals in question handed over the tests. And Harman and an independent expert says that McGovern's July 2000 smear at Ashford and St Peter's did in fact show abnormalities, and that her August 2001 smear should have been reported not as "borderline", but as seriously alarming. "We say that the misreading of the July 2000 smear was negligent," says Harman. "We reckon that by August 2001, the cancer was invasive. If McGovern had been referred promptly to a specialist at that stage, her life would have been saved."

So the stage was set for a court case, and papers were served on Ashford and St Peter's. "If McGovern had received a reasonable explanation, she would probably have left it at that," comments Harman. "But the responses she received from the hospitals were uncooperative, unreasonable, and frankly downright offensive."

Harman urges any woman with worrying symptoms to insist on a referral to an expert. "Don't be fobbed off, just because you've had a smear that has been read as negative." She points out that the lay person might have expected smear tests to be more likely to pick up McGovern's condition as her cancer became more aggressive. This isn't necessarily the case. "Smear tests are there to screen for pre-cancerous cells; they may not show the cancer cells themselves," says Harman.

A year ago, this situation would have seemed unthinkable to McGovern and her family. She loved her job. "I had hoped to continue until I retired; this isn't the sort of job you ever leave," says McGovern. She has worked in Bermuda and Canada, and toured the US and Far East. But she especially loves Australia, where she had planned to spend half the year after retiring. One of her biggest regrets, she says, is that she will not see her nieces and nephews grow up. Despite the fact that she is facing death, McGovern does not seembitter. "I don't feel any animosity towards the individual cytology reader," she says. "It was a system failure. The system is not robust because of constant cost-cutting. Our service is so substandard, we don't even notice it."

She even says that she is "very lucky". "I have three sisters and a lot of friends who have been very supportive, my employers have been exemplary, my current consultant has been excellent. I'm hoping for a period when I feel okay so I can see my friends. I'm normally very optimistic and up-beat, though it's difficult when you know you haven't got much time left."

After much to-ing and fro-ing, Ashford and St Peter's Hospitals NHS Trust has admitted that McGovern's crucial July 2000 smear was incorrectly reported; but at the time of going to press, they had not accepted that this mistake cost McGovern her life. She is now hoping they will admit full liability for what has happened to her. "The money will be of no consequence, now I'm looking at such a short life-span," she says. If she remains well enough, McGovern is hoping to press the hospital to review its laboratory procedures, to make sure they are operating at least to minimum standard.

Ashford and St Peter's Hospitals NHS Trust has apologised to her unreservedly, though Joyce Winson Smith, the director of nursing, says: "There is no evidence, at this stage, to suggest that there is a major problem with the screening of cervical smears at the hospital. We follow and audit according to national protocols."

Epsom and St Helier NHS Trust recognises that there was "an unacceptable delay" in responding to Miss McGovern's request for a review of her cervical screening test and regrets any distress.

"The Trust acted in line with London regional guidance that states that a clinical review of past screening history should be undertaken by clinicians at the Trust that made the diagnosis of cancer. Histopathologists do not become involved in direct correspondence with patients regarding test results. These results are communicated through the patient's current consultant or GP as they have a relationship with the patient." They say that McGovern was advised of this process.

In the end, the way forward must involve increasing investment of funds and better training for screeners. Meanwhile, says Harman, this particular story can only end sadly. "The NHS has lost a valuable nurse. McGovern will lose her life."