Hundreds of cervical cancer cases are going undetected in Scotland each year due to missed routine screenings, The Ferret can reveal.
Our analysis of data from Public Health Scotland found there were 440,000 eligible people in 2020-21 who had not had a cervical screening, also known as a smear test, in the last three to five years.
The Ferret compared these figures to incidence rates which show how many screenings are likely to result in a positive test. We found about 37,000 cases of Human Pappillomavirus (HPV) amongst those who had missed their screenings, of which 340 may be potentially cancerous.
In response to The Ferret’s findings, campaigners said more must be done to avoid long waits and delays, with some calling for at-home testing to be made available across Scotland.
The Ferret’s findings come as the UK marks Cervical Cancer Prevention week, running from the 23-29 January. This year, Jo’s Cervical Cancer Trust has used the week to launch its biggest campaign to date, aimed at ending cervical cancer.
Cervical screening checks for HPV infection – the leading cause of cervical cancer. Most cases of HPV infection will not be serious or long-lasting, but when left undetected can go on to cause cancer.
Since 2008, an HPV vaccine has been offered to every S1 girl in Scotland with the programme expanding to include boys in 2019. But does not protect against all types of HPV meaning screening is still necessary.
The Ferret found that the number of people not attending smear tests in Scotland has been increasing since mid-2019, with 32,000 more screenings carried out in Scotland in 2016-17 than in 2020-21.
The 2020-21 figures are likely to have been impacted by the pandemic, with routine screening paused for a period over lockdown.
The number of smear tests carried out in that year was down roughly 50 per cent, due to Covid-19 restrictions, meaning that at least one hundred more potential cancer cases could have gone undetected.
Those most likely to miss their screening were aged 25-29. In 2020-21, 45 per cent of those eligible in this age group did not access a screening when invited.
Uptake rates among this age group varied across the country, with higher uptake in smaller and more rural areas.
In NHS Lothian and NHS Greater Glasgow and Clyde, the figures were 53 per cent and 50 per cent respectively. But NHS Orkney and NHS Shetland each reported fewer than 30 per cent of people did not attend.
Anyone with a cervix over the age of 25 is eligible for routine screening and will be sent an invitation to make an appointment. Most people have their smear test at their GP surgery.
In 2020, the method by which samples are tested was changed and the screening interval for 25-49 year-olds was altered from three to five years – the same as that for over 50s. Some people are recalled more frequently due to irregular test results.
The Scottish Government women’s health minister, Maree Todd MSP, said the government was working to address inequalities in uptake and encouraged everyone eligible to make an appointment when invited.
But Jo’s Cervical Cancer Trust said many people face delays and long waiting times for appointments. Monica Lennon MSP called on the Scottish Government to urgently investigate The Ferret’s findings and publish an action plan.
Emma Keyes, now 31, from Uddingston, South Lanarkshire, was diagnosed with cervical cancer in 2020 following a routine screening and has since launched a campaign for at-home testing.
“When I got diagnosed I thought I was probably the exception and I was picturing wards full of older women. I thought cancer was something that affected older people,” Keyes told The Ferret. “I was really surprised to find all these girls like me, in their 30s, with young kids. It made me think there must be a more effective way to test.”
“Cervical cancer is preventable if it’s caught, so we shouldn’t be getting these diagnoses at all,” Keyes said. “If we’re not catching everyone at the pre-cancerous stage, then smear testing in Scotland isn’t working just now.”
As part of her campaigning, Keyes spoke to several women about why they had not attended a smear test and found wide-ranging barriers including experiences of sexual assault, disability access and cultural differences, as well as time constraints.
Keyes’ campaign calls for at-home testing to be rolled out across Scotland for everyone eligible. Self-sampling involves the use of a swab to collect a sample that is then posted for testing, and has been backed by campaigners and experts including Jo’s Cervical Cancer Trust.
Lennon, Keyes’ representative in the Scottish Parliament, said the situation in Scotland was “worrying and frustrating”.
“Now that The Ferret has uncovered that hundreds of cancer cases are going undetected in Scotland due to missed cervical screening appointments, the Scottish Government must urgently investigate this and publish a detailed action plan,” Lennon said.
“These figures should be a wake-up call to the Scottish Government.”
Women’s health minister Todd told The Ferret that NHS Scotland’s screening programme’s recall system monitors attendance for cervical screenings and issues prompts and reminders to those who do not attend.
“Cervical screening can prevent cervical cancer before it starts and we encourage everyone who is eligible for screening to make an appointment as soon as they are invited,” Todd said.
“Last year we ran a campaign designed to raise awareness of the benefits of screening and have since funded Jo’s Cervical Cancer Trust to continue important work to understand the barriers that can prevent people coming forward to be screened. This will help us as we work to address inequalities in uptake in all cancer screening programmes.”
Responding to The Ferret’s findings, Samantha Dixon, chief executive of Jo’s Cervical Cancer Trust, said the NHS was under immense strain and people in some areas face delays and backlogs in accessing cervical screening.
“Cervical cancer is a slow-growing cancer so a short delay should not cause harm,” said Dixon. “However it can add additional emotional stress and has the potential to increase the likelihood of women giving up booking or attending. This is something we must work to avoid.”
Jo’s Cervical Cancer Trust are currently working with every local authority in Scotland to increase uptake rates for cervical screening among key demographics.
It is this season’s sponsor of Glasgow City F.C. – Scotland’s most successful women’s football club in the Scottish Women’s Premier League (SWPL). Previously, the charity partnered with The Space in Govanhill, Glasgow, to increase awareness of the importance of cervical screening among Roma women.
Other initiatives designed to increase uptake across Scotland include trauma-informed clinics for survivors of rape and sexual assault in Forth Valley and Glasgow.
In 2021, University Hospital Monklands in North Lanarkshire became the first in the world to pilot artificial intelligence technology in cervical screening, something which has the potential to bring waiting times down and increase testing capacity.
The Ferret’s analysis found NHS Greater Glasgow and Clyde and NHS Lothian had the lowest uptake rates, with more than 200,000 smear tests missed collectively. This is in part because they are Scotland’s two largest health boards.
A spokesperson for NHS Lothian said that a high student population impacted uptake in the area.
“Students typically move around a lot, living at different addresses or spending longer periods of time away from where they may be registered with a GP,” they said. “This can have an impact on the number of missed appointments.”
The spokesperson said NHS Lothian was working to reduce barriers and provide support, including offering work-based clinics for their staff to access screening at alternative times and sites.
A spokesperson for NHS Greater Glasgow and Clyde told The Ferret they continue to urge anyone due to come forward for an appointment.
“It’s understandable to feel anxious about the smear itself, but this is the best way of preventing cervical cancer, so please don’t put it off,” they said. “Women will receive a screening letter when appropriate and should make an appointment with the practice at a time that suits.”
Cover image thanks to Sewcream / iStock
This Ferret story was also published in the Sunday National. Our partnerships with other media help us reach new audiences and become more sustainable as a media co-op. Join us to read all our stories and tell us what we should investigate next.
There are 2 sides to this story. One is the reduction in testing for various reasons including COVID. The other is the shear waste of NHS resources. What are the skilled health workers doing while awaiting 400,000 people who don’t bother to turn up? Undoubtedly, some no shows will have genuine reasons but how many of the 400k bothered to cancel or reschedule? This applies to all NHS screening programmes. The onus must be on the individual to rearrange an appointment.
What is disappointing is that those women who need the test to be carried out at a hospital, seem to have Stobhill as the only option.
This procedure was able to be carried out at the old Victoria Infirmary as well as the New Victoria but this location is no longer available for women on the South Side of the city.