Retired nurse Heather Thompson was hoping for an extra half-hour to herself during her grandson’s morning nap when a letter arrived in the post.
On the corner of the envelope she spotted a health service logo and thought it might be an orthopaedic appointment she had been waiting on for a heel injury.
Standing in the kitchen of her Tandragee home in Co Armagh on a Wednesday morning last month, the 63-year-old opened the letter and “just fell apart”.
It emerged she was one of 17,000 women whose smear test results were being reviewed following an investigation into cervical screening “accuracy” at a Northern Ireland health trust. There were concerns about “persistent underperformance” of some screeners dating back 13 years.
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“At the same time as I was reading the letter my 16-month-old grandson woke up crying in his cot. I was minding him and nipped up the stairs. I felt like sitting down and crying too,” Thompson says.
“I looked at him and thought, my god, if anything happens to me ... I would be missing out on so much.”
The independent probe by the Royal College of Pathology into the Southern Trust was devastating: women in the trust’s screening population, it concluded, are “at risk of missed opportunities to detect and treat precancerous changes”.
The trust issued an apology and set up a helpline, with the organisation’s medical director Dr Stephen Austin acknowledging “the anxiety this report may cause to women”.
Clutching a lavender plastic folder under her arm crammed with notes six weeks to the day after receiving the letter, Thompson walks briskly towards us as her husband David – “my rock,” she whispers – parks the car close to Christmas lights outside a coffee shop.
She explains she couldn’t drive herself as the “phone hasn’t stopped all day”.
Since the story broke, the former hospital and GP practice nurse has become an unofficial spokeswoman and contact for women caught up in the review.
“We’re a group now, the Ladies with Letters ... it was my idea, we couldn’t think of anything else to call ourselves,” she says.
After she did a BBC interview, she had 50 calls that first day.
“The problem was that nobody knew where to go and nobody knew who to speak to. The helpline staff were very nice but there were lots of questions they couldn’t answer,” she says.
“Several hundred women have contacted me since then. Everyone wants reassurance but I can’t give them that. One of the worst calls was on the first Sunday night. She was a single mother with four children. She was sobbing – it was awful.”
Last week the Southern Trust opened clinics for repeat smear tests for those women whose previous slide is unavailable or had taken place more than 10 years ago; due to capacity issues in the UK, it is not possible to offer repeat smears to all 17,000 affected patients.
It insists the “large-scale review” is a “precautionary measure” to “look again for abnormalities to double check that the correct information was provided”.
“This approach, which follows best practice, has been taken in consultation with the Public Health Agency. The decision to check all existing slides will provide a comprehensive assessment and mean that in most cases there will be nothing further that the affected women will need to do,” a trust spokesman said.
On the same day the recall clinic started in Northern Ireland, Minister for Health Stephen Donnelly announced that the Republic is on target to eliminate cervical cancer by 2040.
For public health expert Dr Gabriel Scally, who was the lead investigator in the CervicalCheck screening controversy in the Republic, the differences between the approaches of the governments, north and south, to women’s health are stark.
“When Vicky Phelan took her case and stood on the steps of the High Court in Dublin, it set in train a whole process that saw a root-and-branch review of cervical screening,” he says of the late Kilkenny patient rights advocate and women’s healthcare campaigner.
“It changed it [the screening] and changed the Health Service Executive. The ripples of that are still working through and there’s much more to be done.”
Dr Scally believes, in the South, there have been “effective responses driven by politicians, sometimes against the wishes of their civil servants”.
“That hasn’t happened in the North. Why not? I think the [health service] community is too small, it’s too limited, it’s ‘The Club,’” he says.
“One of the things that is also different is the position of women in Northern Ireland; the position of women in the North now bears no relationship to the position of women in the Republic, where abortion law reform has not just taken place but services have been implemented, which still isn’t happening fully in Northern Ireland. Women’s health is seen as a priority in the South.”
The Belfast-born medic warned that the latest NHS scandal is symptomatic of a dysfunctional health system where women are being “failed” by a “completely out-of-date” screening service.
Unlike Britain and the Republic, where there is primary HPV screening for cervical cancer, the North uses a slower cytology-based system in which slides are examined under a microscope for abnormalities; thousands of women are stuck in a backlog and face six-month delays for a smear test result.
The HPV test is done in a machine, which Scally describes as “really, really accurate” in picking up the human papillomavirus (HPV) that causes cervical cancer.
Northern Ireland’s Department of Health confirmed it will introduce a primary HPV screening next month and attributed delays, in part, to technology problems.
Asked how it responded to criticism that it had failed women, the department said: “The cervical screening programme in Northern Ireland is on track to be significantly enhanced by the full introduction of primary HPV testing next month.”
Primary HPV screening had been approved, it said, but there would be “a lead-in time to ensure all stages of the pathway are ready to manage the change”.
The department said the process has been “complicated” by the “need for the necessary IT upgrade to align with the recent implementation of a new regional laboratory IT system.”
“However, we remain committed to reducing the number of cases of cervical cancer through a combined approach of screening and HPV vaccination,” it said.
Earlier this year, the department began to introduce HPV screening in tandem with the old system, affecting the backlog further.
“In the North you have an approach to screening which is, from my point of view, at least 20 years out of date, with slides being screened in four small laboratories,” Scally says.
“It is also the only cervical screening programme in Britain and Ireland that uses the old approach to testing – I know they’re going to change it – but it was agreed that the correct way forward was primary HPV screening way back in 2016.”
He points out that the Republic managed to implement it successfully during Covid.
“So it’s not magical or mystical; it can be done. But it hasn’t been done in the North, they haven’t modernised their system, they haven’t modernised the test and the Royal College of Pathology report shows extraordinarily poor quality control that existed in this one laboratory that we know about,” he says.
“There’s no doubt in my mind that the outdated system they have been using means that some women with cervical abnormalities that required treatment and maybe even have cancers have not been getting the early treatment that they need.”
Medical laboratories in the Southern and Belfast health trusts last month lost their screening accreditation. Both organisations are appealing the decision.
“My worry is that because the North has got these really small laboratories, which simply would not be allowed to continue anywhere else in Britain or Ireland, that what has emerged in the Southern Trust may only be the tip of the iceberg,” says Scally.
The latest crisis to engulf the Northern Ireland health service comes amid a series of catastrophic NHS failings that have led to three public inquiries being ordered since 2020. An inquiry into alleged abuse of vulnerable patients by nursing staff at Muckamore Abbey Hospital in Co Antrim is ongoing.
Does Thompson feel she has been failed?
“Totally. Even though the trust has met us and we are seeing them again next week, that report is still my bedtime reading. I wake up during the night and things are coming into my head, I can’t switch off,” she says.
“I worked in the health service for over 30 years. I promoted people’s health, I was an advocate for the smear test campaign. I used to come home with my patients’ book at night and if I didn’t get time to ring a patient at work, I would ring them at home because I never liked people being left high and dry.
“I always thought: ‘That could me.’ Now it is me.”
