It was only three months. Four, at the most. Throughout, the letters kept coming, so regularly that Laura Flaherty didn’t need to open them to know what they contained: a repeated request for her to make an appointment for a cervical screening. The procedure gathers cells from your cervix, a narrow “neck” that joins the uterus to the top of the vagina, which are then screened. But it is better known as a smear test because cells that are removed from your cervix with the help of a speculum (a device that keeps the vaginal walls open) and a brush are then smeared on to a slide for analysis. Abnormal cells sometimes require further testing because they may indicate cervical cancer, the best-known gynaecological cancer and, in the UK, the most common cancer in women under 35.

It is also one of the most preventable cancers – if women go for smear tests. Screening is estimated to save 5,000 lives a year. It is 10 years since the reality TV star Jade Goody died of cervical cancer at the age of 27, after which the number of women having smear tests rose by a third. Now, rates of cervical screening are the lowest they have been for 20 years. Why?

Flaherty knew that smear tests were important, but she put it off. She was busy, with two small children and a job managing an aquarium near Manchester. She had no symptoms; she felt well. Who rushes to a smear test? They are embarrassing. There is a cold speculum. There is cold gel. There is a stranger talking to you while looking at your vulva. When Jo’s Cervical Cancer Trust asked 2,017 British women how they felt about the test, it found that 35% were embarrassed about their body shape and 34% about what their vulva looked like, while 38% had concerns about smell.

On a lively Facebook group called Do Not Fear The Smear, I encounter Angela, a nurse from South Yorkshire. She is in the group to reassure women who are scared, who worry it will hurt. Women are always apologising to her, she says, because they haven’t shaved their legs or their feet smell. “They apologise for anything but their bits.” Angela doesn’t care; she just wants to do the test.

She understands why women are embarrassed or fearful: there is no more vulnerable position for a woman than on her back with her legs open. Women who have been sexually assaulted may find it particularly intimidating and Angela is sensitive to that. “I always make sure I’m OK to lock the door. Some don’t like it, if they’ve been abused.” She tries to keep her manner relaxed, but confident; you want a nurse who seems to know what she is doing.

Chloe Delevingne has a smear test live on the BBC’s Victoria Derbyshire show. Photograph: BBC

On the other hand, she says: “I don’t want to appear over-bossy; if abuse has been going on, it’s somebody telling them what to do.”

Among its reams of helpful information, Jo’s has tips to soothe any fear. You can ask to insert the speculum yourself. You can ask for a smaller speculum. You can bring a friend to hold your hand. You can ask for an appointment before the scan just to talk about what will happen. You can hope for a nurse like Angela, who, when she feels someone’s belly tensing up before the speculum goes in, starts singing Let It Go from Frozen; who has a poem taped to the ceiling for her patients to read; who warns them that she has been warming the speculum with a light “so that they’ll get a tan in a place they’ve never had one before”.

“There are layers of worry,” says Dr Philippa Kaye, who works as a GP ambassador for Jo’s and who recently carried out a smear test on live TV, on Chloe Delevingne. By showing how quick and painless the smear test was – Kaye’s speculum and brush were in and out in under a minute – she hoped to melt some of the layers. “We didn’t use a screen because it was important to show that Chloe didn’t crawl off the bed afterwards. It wasn’t for shock value, but to empower. Information is empowerment.”

Yet there is no shortage of information. Women have been sent pamphlets and messages. There have been campaigns galore. Dawn Long, a 42-year-old accounts assistant from Cheshire, put off her smear test for 10 years. “I was scared there was something wrong,” she says. Ironic, really, because then she began to get a clear discharge and something was wrong. It took nine months for her cancer to be discovered.

I think people think that if they have cancer they can just get it lasered off. It’s not like that

Flaherty eventually went for screening, then waited six weeks for her results. Official targets are for 98% of women to get their results within 14 days of their appointment, but, as a damning report by the National Audit Office in February showed, only half do. Between January and June 2018, 43,220 women didn’t receive the invitations to cervical screening that they should have, while 4,508 did not receive their results letters. Even the regular operation of screening was judged unfit: the database used to assess who needs to be screened holds information in 83 separate databases, “making it hard to track screening histories when people move across geographical boundaries”. The IT system used to send out invitations is more than 30 years old. The database, the report concluded, is not fit for purpose.

Flaherty waited patiently, without worry. She felt well. But when the letter came it told her she had abnormal cells and that she should have a colposcopy – in which a microscope is used to examine the cervix – and then a biopsy, which removes tissue with a heated loop. “I always say that a letter made me ill. A letter arrived at my house and all of a sudden I was ill,” she says. Finally, she was invited to meet her consultant. She could read the news on his face. “I broke down and he let it happen. He knew I needed to let it go. I was saying: ‘I have two small children; if I die, they won’t remember me.’ After a minute, I took a deep breath and said: ‘How do we fix it?’” The answer was a hysterectomy.

Long’s cancer had to be treated with brachytherapy, a procedure that requires you to have hollow rods that target the cancer with radiation inserted into the cervix. “I think people think that even if they have cancer they can just get it lasered off. It’s not like that.” Long had four sessions of brachytherapy; with each session, she learned to ask for more pain medication.

Angela, a nurse on the Facebook group Do Not Fear The Smear, understands why women are embarrassed or fearful: there is no more vulnerable position for a woman than on her back with her legs open. Photograph: Getty Images

Of course, Long wishes she had gone for her test sooner. “My consultant says that the cancer would have been picked up, but women have had clear smears and still got cancer.” Flaherty’s cancer was so high up her cervix that it probably wouldn’t have been caught anyway. Both women have had the all-clear, but they continue to work formally and informally as outreach workers, volunteering to talk to women about cervical cancer. They can’t not.

Last week, Public Health England launched a huge campaign to raise the numbers of screenings, although critics say the system is already in meltdown, with labs closed and scientists departing. This is because screening is changing. Since 2008, girls aged 11 to 13 have been offered a vaccine against human papillomavirus (HPV), which causes nearly all cervical cancer. This year, the UK will switch to an HPV-primary screening system, whereby cells will first be tested for high-risk HPV (currently, cells are tested for HPV only if they are abnormal). This switch may save 500 lives a year. But it also means that far fewer cytologists will be needed, hence the exodus of staff, which will almost certainly lead to delays in women getting results, too.

Maybe self-sampling (SS) could help, too. This is the age of DIY, after all. We can operate our own supermarket checkouts and book our own holidays – surely we can get a swab of cervical cells without too much trouble? SS can “overcome both emotional (eg embarrassment or fear of pain) and practical (eg difficulty making appointments) barriers to cytological screening”, researchers at the Wolfson Institute for Cancer Prevention have written. Self-sampling has been trialled in plenty of countries; there have been a few pilot studies in the UK. “Non‑responders” – women who have not taken up screening invitations – are more likely to self-sample, but when they have to ask for the kits response rates are the same as with regular appointment letters. Now, cancer-prevention researchers are testing other options, such as providing the sample kits when a woman attends a GP or nurse appointment.

Something must change. Flaherty, Long, Angela: they are all hearing too often of women, including younger women, who are dead and shouldn’t be. Will it take another Goody? “I hope not,” says Flaherty. “Because it could have been me. I could have been the girl who died.” This is why she still volunteers her time. “I talk to young women and I start with the messages and they say: ‘Yes, yes, we know.’ When it’s a healthcare professional, you zone out. People think: ‘They’re saying it because they have to.’ Me, I’m saying it because I need to.” Then she tells them she had cancer, and they say: “‘Wow’ ... because I don’t look any different. But it’s having it in front of them.”

Then, perhaps, they open the letters that could save their lives.