Why aren’t women having smear tests?

Women aren’t coming forward, and in doing so they’re putting their health at risk. Why?

NHS staff shortages are playing a part in making appointments difficult to secure (Getty Images/iStockphoto)

“It’s really an awful thing to say, but we probably need a celebrity death to make a difference.”

My GP practice nurse is making small talk at the most awkward of moments. I’m clambering back into my jeans behind a blue nylon curtain after she’s calmly and professionally performed every woman’s least favourite routine check up: the smear test.

To give her credit, my nurse has made me comfortable throughout, but there needs to be a bit of chit chat to avoid any weird silences and she’s latched onto something she’s seen in my notes: I’m a journalist. She asks what I write about, and I tell her that I often write about health issues. “You should write about cervical cancer,” she tells me. “The rates of women coming for a smear is dropping. It’s hard to get anyone through the door.”

The test is free at the point of access and can prevent late diagnosis of what is a devastating disease. In the UK, every person registered as female with their GP called for screening every three years from the age of 25 to 50, then every five years until 65 when the risk of cancer plummets. After the very public death of reality TV star Jade Goody from cervical cancer in 2009, at the age of just 27, smear test attendance reached a new high, especially among younger people. But once again women aren’t coming forward, and in doing so they’re putting their health at risk. Why?

Surprised by how difficult GPs were finding it to get women tested regularly – remembering, too, the additional pressure every late diagnosis puts on both the patient and on the NHS – I tweeted about the concerns my nurse had shared. Life is busy, and sometimes it feels hard to find the time; but this is important. I couldn’t have predicted the response.

Seeing my plea to get out there and get tested, hundreds of women responded sharing their experience of endless attempts to get themselves an appointment thwarted by a mind-bogglingly daft array of unnecessary complications. Given that every GP practice is financially incentivised to get women on the examination table (I have no problem with this; it saves the NHS significant money by avoiding expensive chemotherapy and other oncologic treatments, and saves lives too) that seems bizarre.

But women are struggling. One reported: “I’m trying to book mine but I’ve been put on a waiting list and will get a call. GP surgeries are so stretched, who knows when that will be.”

Another revealed: “My GP only has same day appointments available and you have to be logged on by 8am to get one. They won’t take appointment requests over the phone.”

Since Covid, the migration of medical services online has had some perverse side effects. A smear test is one examination that clearly can’t be carried out in a virtual consultation, but is there any reason why it should be easy to book online?

Time and again, NHS staff shortages are playing a part in making appointments difficult to secure. Many women reported that their clinics only offered cervical screening on one day a week and during a limited number of hours. That can’t be right. Even more struggled with repeated cancellations at the last moment – often after they had already rearranged work or other commitments to attend.

Some of these absences will be due to genuine absence of the nurse practitioner. More, however, will be caused by NHS prioritisation of an ever-growing workload. If you only have a handful of community nurse hours available that day, those hours are reallocated to more critical, time-limited care such as the infant vaccinations schedule and seasonal flu jabs.

It’s true that smear tests aren’t so time critical; we only need to have them every three years after all. But late cancellations come with another psychological cost. Often women have geared themselves up to make that call and book the slot. There’s not much incentive to keep chasing a surgery that makes multiple cancellations of an appointment that you’d really rather not go to in the first place.

For a proportion of women, there is real trauma involved in making that call. Survivors of rape and sexual abuse report the physical vulnerability required to have a test to be so deeply upsetting as to be impossible. A handful of services cater specifically to their needs but they are insufficient to reach everyone who might require a different approach to testing.

For many there is no deep-seated psychological barrier, but a genuine hatred of the test compounded by years of poor treatment from medical staff. Often the test is painful, particularly if the nurse pays no attention to individual anatomy. Many women don’t know they have the right to request a smaller speculum. Unkindness from previous testing nurses often leads to a reluctance to repeat the test.

One woman on Twitter confided that she had been humiliated by a nurse who found her test difficult to complete, repeating over and over again that she “was her first failure”. Another revealed: “[Nurses] make no allowances for those who suffer vaginismus… Our pain is ridiculed and we’re treated as an inconvenience. Some of us are told to get drunk before it, and others are told to hook up with a man to loosen things up in there. It’s painful, and it’s humiliating.”

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There could be an alternative that would make the test more palatable for all. Because the cell changes that lead to cervical cancer are highly unlikely in the absence of the HPV virus, the swabs taken for testing are now tested for the presence of HPV first and only screened for abnormal cells if they are found to be positive. (Use of the HPV vaccine in younger people is the reason the age for first screening is now 25, and may also be a factor in drop off rates for testing too).

Women, understandably, argue that they should not have to go through such an intimate, invasive test when a routine at-home swab for the presence of HPV is possible, and it’s useful in the avoidance of over-treatment and reluctance to be screened. Other countries, such as Australia, already offer it.

Why doesn’t the NHS offer it yet? There’s an obvious answer: it’s more expensive, of course. But with nurses’ time now at a premium and rates of testing dropping fast, what’s the bigger cost? If Covid is prompting a think of how we approach personalised medical care, here’s a good place to start for women’s wellbeing.