More than 8,000 calls have been made to a UK helpline since it was revealed that 450,000 women were not invited to routine breast cancer screening due to a computer error. BBC News quotes Public Health England as saying it was not aware of a national problem with the screening programme until January. But, it says, two National Health Service (NHS) trusts in England raised concerns about IT issues as early as March 2017. They were told the problems were a local – not national – matter.
According to the report, the IT problem related to an algorithm used to decide the order in which to send letters to women of different ages. The national screening error, which dates back to 2009, meant women aged 68 to 71 were not sent letters inviting them to their final screening appointment.
Breast cancer screening is currently offered once every three years to women aged 50 to 70 in the UK and Health Secretary Jeremy Hunt said that up to 270 lives may have been cut short because of the mistake. The 309,000 women affected – those who are still alive – would be contacted by letter by the end of May with the offer of catch-up mammograms, he said.
The report says breast cancer survivors are demanding answers and experts are asking why the error was not spotted sooner, as cancer charities are being inundated with calls. Breast Cancer Care said its helpline had received four times its usual number of calls in one day. Clinical director Dr Emma Pennery said women contacting them were feeling “angry and confused”.
“Many are anxiously playing a waiting game until the letters arrive, not knowing if they’ve been affected. Others are extremely worried about when their letters will arrive and how long it will take to get screened.”
Dr Jenny Harries, deputy medical director of Public Health England, is quoted in the report as saying: “There are a number of organisations involved in this and I think we are all – Public Health England, the NHS, NHS Digital, the Department of Health – devastated by this. We have a screening programme that is world-class. We wouldn’t want any lives to be shortened. We have gone back and fixed all these glitches and audited that, so women can be assured going forward that that is sorted.”
Failures in breast cancer screening could end up costing £100m in compensation, lawyers have warned. The Independent reports that clinical negligence specialists have said that the combined cost of compensating the next of kin of anyone who has died could run into the millions, but it could be even higher when factoring in other harm across all 450,000 women who missed out on tests.
“In terms of compensation we are looking at claims worth in excess of £5m plus in relation to fatal cases,” said Robert Rose, head of clinical negligence at Lime Solicitors. “But if we factor in other damage caused to women who have survived, and the costs of legal action – if that becomes necessary – we are looking at figures of anywhere between £50-£100m.”
The report says to begin to understand the extent of any harm, an already stretched health service will need to rapidly review the tens of thousands of women who went unscreened each year since 2009. “The cost to the NHS in terms of doctors now having to trail through records, the cost of recalling all these women will be huge,” said Suzanne White, head of clinical negligence at law firm Leigh Day. “I used to do mammograms – because I used to be a radiographer – they’re expensive to do, they use expensive machines and radiologists have to look at them – but there’s a shortage of radiologists. “That’s going to cost the NHS a lot, but how you value that I don’t know.”
White added this could be additional to the “£40m or £50m for compensation, and then lawyers’ fees on top”. But she stressed that determining in each case whether the outcomes would have been better if screening had not been missed would be a very complex process.
Meanwhile, medical experts have said the scandal should be used to take stock of the benefits of the national screening programme, and to address a significant lack of public understanding about screening’s harms. “I believe that the furore over the NHS breast screening programme error has resulted in unnecessary worry for those women who may not have received a breast screening invitation,” Paul Pharoah, professor of cancer epidemiology at the University of Cambridge is quoted in the report as saying.
“According to the Independent UK Panel on Breast Cancer Screening report published in 2012, for every breast cancer death prevented three breast cancers will have been ‘over-diagnosed’.” The landmark study found no improvements in overall mortality rates from screening, and women might have had very small lumps picked up – which would never become cancer – but could have led to them having unnecessary mastectomies to remove their breast or exposed them to harmful radiation treatment.
But, the report says, in the wake of the announcement, the loved ones of women who died of breast cancer have said they were left devastated by the news that there was a chance their odds could have been improved.
Charities have also warned that there has been a surge in concern from women across the country. “After this appalling blunder, Breast Cancer Care’s helpline is set to receive four times its usual number of calls by the end of the day,” said Pennery. “The women contacting us are feeling angry, confused and want answers.”
The Department of Health and Social Care is quoted in the report as saying it was too early for it to estimate the cost of any compensation. It also could not comment on where any compensation funding would come from.
Hunt has told the House of Commons some women will have avoidably died as a result of the glitch but, says a report in The Guardian, not everybody agrees with him.
The women were enrolled in AgeX, a major NHS trial designed to find out whether extra screening would protect older women from breast cancer. When the trial began in 2009, the records of the women taking part had a “flag” on the NHS system, which meant they did not receive any more routine invitations for screening. Half of those taking part in the trial would have been screened as part of the trial, but the other half would not, enabling researchers to work out whether screening beyond the age of 70 actually saves lives or not.
Hunt told the House of Commons it has taken 10 years for the mistake to be recognised. Some cancers that could have been picked up early and treated will have been missed, he said. As many as 207 women may have died unnecessarily, a tragedy for the women and their families.
Women are called for breast screening in the UK every three years between the ages of 50 and 70. But, the report says, not all choose to go, in the light of global findings from researchers that the x-ray screening, called a mammogram, can pick up very small cancers and benign growths that will never cause the woman harm – especially in older people. Last year had the lowest breast screening uptake ever in England, at 71%. In some areas, it was even lower – the lowest was 55.4%.
But at the same time there has been pressure from breast screening advocates and patient groups to extend it to both younger and older women. The AgeX trial was set up in 2009 to test whether cancers could be usefully picked up, without undue harm, in those aged 47 to 49 and those aged 71 to 73. Across England, 65 breast cancer units recruited women in these two age groups. A computer program selected at random half of the extra women to be screened and half not to be screened.
All the women in the older group, aged 71 to 73, should have had a last routine scan three years after their last mammogram and before their 70th birthday. But the NHS screening computer program appears to have cancelled it. That will have meant that some women entering the trial had their final screening aged 67 or 68. Half the participants were randomly assigned to extra screening. It is those in the other arm, the control group, who make up the 450,000 women.
The report says Hunt spoke of a disaster and apologised to women, but although he and the breast cancer charities talked in apocalyptic terms, not everybody shared that interpretation of what had happened. Since January, Public Health England has been investigating and talking to experts, some of whom say it is not as clear cut as Hunt made it appear.
Sir Richard Peto, professor of medical statistics at Oxford University where the AgeX study is run, said what has not been understood is that the screening system works on a three-year cycle. That means some women have their last mammogram at 67, some at 68, some at 69 and some at 70. That’s how the screening system was set up. They have never been offered a last screening specifically in the year of their 70th birthday. “That automatically means there is going to be a three-year variation. It is misleading to describe this as a disaster,” he is quoted in the report as saying.
The randomised trials in AgeX have not yet been concluded, so there is no good evidence as yet even as to the benefits of screening women over 70. “There is substantial uncertainty as to whether screening is appropriate for older women because although it will pick up some cancers, it will also lead to quite a lot of unnecessary surgical treatment and worry,” said Peto.
The report says the age of last screening is also somewhat random. There is little difference in risk – as far as anyone knows – between the age of 67 and the age of 70 or 71.
The health secretary also acknowledged several times in his statement to the House of Commons that there is no consensus among experts as to whether the benefits of screening for older women outweigh the harms.
But there may still be women whose cancers could have been caught at an early stage and dealt with before they could do serious harm, who have died instead. The report says an inquiry chaired by Lynda Thomas, the CEO of Macmillan Cancer Support, and Professor Martin Gore from the Royal Marsden Cancer Hospital will look into each case to find out whether a system that was supposed to help women, actually let some of them down and led to avoidable deaths.
In Ireland, meanwhile, the government has had to open an official inquiry into an extraordinary breach of trust in the state’s handling of women’s healthcare. The Guardian reports that as so often happens in these cases, the astute inquiries of one individual have unravelled a national calamity. Vicky Phelan, a terminally ill 43-year-old woman who was diagnosed with cervical cancer in 2014, questioned why a smear test in 2011 had given her the all-clear. Abnormalities were detected in a test three years later, but she wasn’t told about them until 2017, by which time the disease was advanced. She sued the US lab to which the test had been outsourced by the Irish screening service.
The report says Phelan is not alone – 208 other women had abnormalities that were detected only after tests were audited, and the information was withheld in 162 of those cases. Seventeen women have since died, 15 of whom were not informed about abnormalities in their tests. And the numbers keep growing. At least 1,500 more women who were diagnosed with cervical cancer in recent years did not have their smear test results reviewed by the national screening service to determine if their disease could have been flagged up sooner.
As a result of the scandal, the report says a team of cytologists from the Royal College of Obstetricians and Gynaecologists in the UK will now review the screening history of every woman who has had a cervical cancer diagnosis in Ireland since screening began in 2008.
Of the women invited to undergo smear tests every year by Ireland’s national screening service, 270,000 take part – an 80% take-up. To examine smear tests, the Irish Health Service Executive (HSE) has been using two US companies, with one laboratory in the US and one in Ireland.
The report says the damage done to confidence in the screening service by the fallout from the Vicky Phelan case is massive, with many women now worriedly revisiting the results of their tests, scared of false negatives. The Labour politician Alan Kelly warned fellow members of parliament that the Irish public viewed the episode as “one big, massive cover-up”.
Adding insult to injury, a helpline established last weekend suffered a technical glitch, “The last thing anyone needed, I know,” the Health Minister Simon Harris tweeted.
The report says the drama has played out in real time through the media. Phelan was on an Irish television talk-show when news broke that Gráinne Flannelly, director of CervicalCheck, had resigned. Now there are calls for Tony O’Brien, chief of the HSE, to follow suit. It emerged this week that he joined the board of a US contraceptives manufacturer earlier this year. He has now taken leave from that role but has resisted pressure to resign from the health service, saying he regarded the crisis as “a personal blow”.
Public anger is compounded by an atmosphere of heightened tension as women’s health and reproductive healthcare is being debated hourly, in the media and on the doorsteps, ahead of the vote to legalise abortion on 25 May. Beneath all of this is a simmering rage at the evidence that women’s healthcare is treated in a cavalier manner.
And, the report says, news that thousands of women in the UK may have missed out on breast cancer screenings they were entitled to has not gone unnoticed. Why, some wonder, do these healthcare mistakes seem to disproportionally involve women.
Journalist Miriam Lord has eviscerated Ireland’s paternalistic and patriarchal political and medical culture. “Another day in the Dáil and another gallop of TDs into the chamber to agonise over the latest sorry episode concerning this state’s disordered relationship with women from the waist down,” she is quoted as saying.
Sinn Féin’s spokesperson on health, Louise O’Reilly, told the Irish parliament: “The toxic culture of concealment and harassment pursued by the HSE and government against women who have been wronged by the state is now in full public view”.