As One Million Women Miss Smear Tests During Lockdown, Should We Be Worried?

"For someone like me, those months were really quite crucial," says one cervical cancer survivor.
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Around one million women have had their smear tests cancelled or postponed during lockdown, charities estimate, with some warning that the longterm impact could mean an increase in cervical cancer cases.

Going for a smear test – a process officially called cervical screening – allows a clinician to check for the HPV virus or cell changes in your cervix. Some cases of HPV and cell changes go back to normal by themselves, but in other cases, treatment is needed to prevent abnormalities developing into cancer.

Screening has been paused almost completely in Northern Ireland, Scotland and Wales, where only “a handful of appointments” have been carried out during lockdown, according to Kate Sanger, a spokesperson from Jo’s Cervical Cancer Trust. Meanwhile, screening services in England have become a postcode lottery, with decisions about whether or not to run services decided at a local level

Pausing screening “is far from ideal”, but necessary to protect women and NHS staff from the immediate threat of coronavirus, says Sanger.

“That’s not to downplay the anxiety or frustration that will be felt by some women who are having tests delayed, especially if they have experienced abnormal cells in past tests, which will mean anxieties will be even higher,” she tells HuffPost UK.

Around five million people are invited for screening every year in the UK, Sanger says. Due to the disjointed approach across England during lockdown, we do not know exactly how many appointments have been missed in the past few months, but the charity estimates at least a million women have been affected.

“We are anticipating there to be an increase in people with cell changes and potentially some additional cancers as a result of the pausing,” Sanger says.

Women are sharing details about their cancelled appointments on social media, with many expressing concerns about when services will resume.

Smear test cancelled twice now. All that campaigning in 2019 to get women to attend them. Just to tell them they are now insignificant. What the hell are we doing?

— HarrietLucy (@MissHarrietLucy) May 16, 2020

Four years ago today my friend, Claire, lost her battle to cervical cancer. I had my smear test cancelled in March as it was a non emergency appointment. Let’s get these services back online as soon as it’s safe to do so, so that people can get tested and the treatment they need. pic.twitter.com/53WwAfBmUq

— Trish Roberts (@TrishAtAspire) May 14, 2020

Rang my doctor today about smear test and she said it’s closed for now. I need a yearly test due to previous serious issues and it’s overdue now. Will try to get it done privately instead.

— Máire (@busymammy26) May 16, 2020

My surgery have cancelled all smear tests. Due early March. I was too late just before they shut the doors. Now just been told to wait. Worrying really.

— A girl (@Losing_Nemo) April 28, 2020

At the end of March I had an NHS letter reminding me to attend my smear test. It’s drummed into us that we mustn’t leave it. Catch cervical cancer early they say. I rang my GP and all smear testing is cancelled at the moment. Worrying!

— Clare (@cosyhomeceramic) April 26, 2020

Hearing about the delays can be particularly troubling for women like Penny Simmons – a cervical cancer survivor who now campaigns to raise awareness of the importance of cervical screening.

“If I hadn’t gone for screening, I’d have never found out I had cancer, or if I had found out, it would have been much, much further down the line,” Simmons tells HuffPost UK. “At the time of my screening I had no symptoms at all and there was nothing to indicate that there was anything wrong with me.”

Penny Simmons and her three children.
Penny Simmons
Penny Simmons and her three children.

The mum-of-three was 37 when she was diagnosed with cervical cancer in 2018. She’d had a smear test one year previously that had detected “borderline abnormalities” so was invited for another smear 12 months later, instead of the usual three-year gap.

“I went from borderline to cancer in a year. I’ve been thinking about this a lot during lockdown,” she says. “We don’t know when the screening will resume. All these months are passing and for someone like me, those months were really quite crucial.”

Simmons had a hysterectomy to remove her cancer and didn’t require chemotherapy or radiotherapy, but she’s worried women impacted by lockdown will not have the same treatment options available to them.

“I don’t know how fast growing my cancer could have been in that time if I’d had a delay – and thank God I’ll never know,” she says.

“I went from borderline to cancer in a year. I’ve been thinking about this a lot during lockdown.”

- Penny, cervical cancer survior

Even after it’s declared safe for smear tests to resume, the system “won’t be up and running quickly”, says Sanger.

GP surgeries – where the majority of women go to have their smear tests – will be dealing with a backlog of “all manner of health conditions” post-lockdown, on top of a long waiting list of women due their smears. They’ll also need to implement social distancing, which may reduce the number of patients they can see in a day.

Sanger is also concerned that fewer women will choose to attend their appointments, because some women will be concerned about undergoing “a very intimate test after so long social distancing”.

Gemma Jackson, 38, from Derbyshire, admits she’s cancelled her smear test for this reason, despite the fact they’re still going ahead in her area. “I don’t know if that’s wise, I’ve had pre-cancerous cells before,” she says. “I’m just scared to go to the doctors.”

Jackson has two children and her husband is a key worker, so when her April smear test date approached, she decided it “just wasn’t worth the risk of catching coronavirus”.

“I appreciate that the chances of us getting seriously ill are slim even if we do get it, but I’m just wanting to stay home now,” she says. “The thought of going to the doctors just feels surreal and risky. I just need to pluck up the courage to go I think. I understand potentially getting cancer could be much worse.”

Other women share Jackson’s concerns. The Eve Appeal’s nurse-led information service, Ask Eve, saw a 22% increase in calls in March compared to February 2020 with people worried about the impact of the pandemic on gynaecological cancers.

Karen Hobbs, who runs the service, tells HuffPost cervical screening is by far the most common topic women have been calling to discuss.

Some women have increased anxieties about screening, or are confused about whether or not they can book a smear test in their area, she says. Others calling the helpline have had appointments cancelled and are now worried about the implications for their health.

Hobbs tries to reassure women that HPV – the virus that causes abnormal cells in the majority of cases – is usually slow-growing.

“For the most part, it’s medically safe to postpone an appointment a little bit. Routine screening is usually a check of a healthy cervix,” she says.

However, she says the risk of lockdown delays will be higher for women who are already overdue having a smear test. Women delay smears for a multitude of reasons, from difficulty getting an appointment around childcare to past trauma that makes the procedure itself difficult.

“It would be very rare and unlikely [to develop cancer during lockdown], but of course it’s a risk and I would be lying if I said it wasn’t a risk,” she says.

So what can women do while services remain paused? Hobbs recommends refreshing yourself on the symptoms of cervical cancer that can be detected without a smear test.

These include unusual bleeding – such as bleeding while not on your period, particularly after sex – unexplained pelvic pain, pain and discomfort during sex, and an unpleasant smelling vaginal discharge. If you recognise any of these symptoms, you should contact your GP surgery to arrange a virtual appointment.

“I was diagnosed with cervical cancer a few years ago. I had bleeding after sex and was diagnosed very quickly and treated very early,” Hobbs says. “So I’m very passionate about people knowing that these things can be sorted out. Cancer doesn’t need to mean what it used to mean.”

Sanger says the government also has a part to play, by ensuring nurses have the PPE required to conduct smears safety and get the service back up and running. “Safety is key,” she says, “and as soon as it’s safe to be providing screening services, they absolutely should be running as soon as possible.”

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