Cervical cancer accounts for 1 in 50 new cancer cases in women and people with a cervix in the UK. Screening is essential to identify and treat preinvasive cervical disease, but many people report barriers to engaging with or accessing screening services. Here, Stephanie Gillibrand, Caroline Sanders, Emma Crosbie and Jennifer Davies share research into both negative and positive experiences of screening, and whether self-sampling methods could help to remove barriers to screening and narrow health inequalities.

• While the incidence of cervical cancer has fallen since the 1990s, screening coverage has also declined, in part due to barriers to care faced by some individuals and communities.
• Self-sampling methods, including vaginal swabs and urine, were seen by many to be less invasive, less stressful, and offered more control over their own bodies and health.
• A national rollout of self-sampling alongside the traditional ‘smear test’, accompanied by accessible and appropriate information, could help to reduce disparities in access to, and outcomes of, cancer care.

Cervical cancer accounts for 2% of new cancer cases in women in the UK, affecting around 3,000 people each year, with those from more socioeconomically deprived areas particularly affected. Cervical screening (commonly known as the ‘smear test’, carried out using a speculum) is key to detecting and treating cervical cancer at the preinvasive stages, when outcomes for patients are most positive, and is offered to people with a cervix aged 25 – 64. However, while the incidence of cervical cancer in the UK has fallen since the 1990s, so too has screening coverage, particularly since the COVID-19 pandemic.

Under-served communities, including those from some ethnically diverse communities, older and younger groups, people from more socially deprived areas, those with lower education levels, and those with intellectual disabilities are typically less likely to attend cervical screening. Those who have experienced sexual violence are also less likely to attend regular screening, as are those who have experienced homelessness.

Against this background, we set out to explore the barriers to screening uptake and how they may overlap with other barriers to healthcare. We also sought to understand how the introduction of self-sampling methods (which have similar test accuracy to routine cervical screening) may help to overcome these barriers.

Barriers to screening

There are a number of reasons why some people are unable or unwilling to attend screening appointments. On an individual level, these can include a lack of knowledge or awareness, embarrassment, or fear of discomfort or pain associated with the speculum examination. At a systemic level, these barriers can be childcare responsibilities or inflexible working patterns, mirroring other known barriers patients face in accessing primary care.

Working with 46 participants from across Greater Manchester, we investigated attitudes to, and experiences of, cervical screening. Many participants described negative past experiences as barriers to attending future screening appointments, with pain and discomfort a common point raised by participants of all backgrounds:

“I’m normally quite good at like gritting my teeth through something, but I was just fully in tears, it was so painful.”

Other participants, especially those from ethnic minority backgrounds and those with mental health conditions, highlighted a lack of empathy or feeling of being rushed by the healthcare professionals (HCPs) carrying out the screening. This feeling of disempowerment, and a lack of control over their own bodies, reflects wider concerns around women’s experiences of health and care services.

The speculum itself was a significant element of participants’ discomfort and often formed part of their reluctance to attend screening appointments.

“[…]before they even put a speculum anywhere near you, you’re tensing your body up. And she’s like, what you doing that for, I’ve not even touched you yet.”

Despite these barriers, many participants said they felt screening attendance was compulsory, and a necessity to their health.

Positive experiences

It is important to note that not all experiences reported by participants were negative. Examples of good practice were also reported, particularly where HCPs helped them to feel comfortable and communicated well throughout the procedure. This contributed to a greater feeling of control over the process.

Other examples of good practice include practical steps by GP surgeries to improve the ease of booking and offering accessible appointments.

Improving access

Self-sampling alternatives to cervical screening, such as vaginal self-swabbing or urine sampling, may help to overcome some of the barriers reported by participants, and improve screening coverage.

Overall, these approaches were welcomed by all participant groups, being seen as more accessible than the traditional speculum method, as well as less invasive and less stressful. These methods also increased feelings of control and autonomy. Being able to do screening in their own homes was highlighted as a key benefit, with participants generally seeing it as more practical and convenient. However, it is important to note that some participants would prefer to attend a GP practice.

The removal of the need for the speculum was particularly welcome among participants, and ultimately, participants felt that self-sampling methods gave patients a choice in which method was most suitable for them. Consequently, there was a sense that self-sampling methods would increase the propensity for screening amongst the groups sampled.

There was some confusion and scepticism towards self-sampling methods, as to why they were not already offered, given the relatively low invasiveness compared to the speculum test.

“I’m just a bit, still a bit confused about why, having […] had a really painful experience, about why that has ever been necessary, if it’s possible to just have a wee.”

This was sometimes expressed alongside concerns about the accuracy of self-sampling methods, and participants’ confidence in taking the self-sample.

Recommendations

The findings of this research suggest a national rollout of self-sampling alongside existing ‘smear tests’ would help to remove some of the barriers to cervical screening. This would also support work to narrow inequities in health outcomes, providing more choice to women who would otherwise face challenges in accessing or engaging with healthcare services. This should be reflected in an update to the Women’s Health Strategy, led by the Department of Health and Social Care.

In order for self-sampling to be perceived as a reliable alternative to traditional cervical screening, participants identified the need for accessible and appropriate information on the self-sampling methods, suggesting this should include diagrams and video explainers of how to use the self-sampling methods, highlighting that written information alone would not suffice.

Alongside this information, participants noted that the rationale for introducing self-sampling should be clearly communicated to patients. For instance, the accuracy of self-sampling methods and how they work should be clearly explained to inform patients about why these were being offered as an alternative to the healthcare practitioner-taken cervical sample.

There is also a role for the Office for Health Improvement and Disparities (OHID) in leading on the creation and dissemination of this guidance, with particular focus on those communities and individuals known to face the strongest barriers to screening.

Cervical screening is an essential tool in the armoury to eliminate cervical cancer, ensuring the best outcomes for the patients, and lowering the cost to health services. It is therefore vital that screening is made as accessible as possible, to ensure the greatest burden of disease does not fall on individuals and communities who already face additional barriers to accessing healthcare. A national rollout of self-sampling methods would help fulfil the promise of successive governments, and aid in addressing health inequities for under-served groups.