Barriers and inequalities in cervical screening
In females in the UK, cervical cancer is the 14th most common cancer, with around 3,200 new cases every. The cancer is fatal for one-quarter of those.
Worryingly, overall cervical screening uptake has been dropping year-on-year in England:
- In 2023, NHSE’s data showed that about 4.6 million people aged 25 to 64 in England (or 30%) – amounting to the highest proportion in a decade – have never been screened for cervical cancer or haven’t taken up their latest invitation to book appointments for screenings.
- Younger age groups (25-39) were less likely to have taken up screening than those aged 50-64.
We need to address the low uptake of cervical screening
Cervical cancer is highly preventable through human papillomavirus (HPV) vaccinations for 12- to 13-year-olds and cervical screening for women.
National charity Jo’s Cervical Cancer Trust campaigns on cervical cancer prevention, diagnosis, treatment and care. They have examined the barriers that certain people, such as those from ethnic minorities, with disabilities, and young people, face compared to the rest of the population, which may make them less likely to take up screening.
Local Healthwatch have also conducted research in recent years to understand why some women face barriers or feel apprehension about going for a screening.
Key barriers to cervical screening
Healthcare providers do not provide patients with suitable information
Research from local Healthwatch shows that healthcare providers do not consistently provide patients with adequate information about cervical screening. The resulting lack of awareness is a key factor behind poor uptake rates, according to Healthwatch Brighton and Hove. It is also a particular issue among younger groups, as Healthwatch Bolton found not everyone they spoke to had heard of cervical screening.
Even when healthcare providers gave information to patients, they needed help understanding it, as Healthwatch North Lincolnshire reported.
“[The invitation letter] looks very formal with too much medical speech.” - Healthwatch North Lincolnshire
People who don’t speak English well struggle to understand information about cervical screening when material isn’t available in their language. This can lead to lower uptake, as Healthwatch Bolton also found.
This lack of adequate information can lead to misconceptions, for example, that screening is only for sexually active people. One young woman also told Healthwatch Greenwich that in her family cervical screening was discouraged due to the misconception that it would affect her virginity status.
Local Healthwatch research also shows that health services don’t always provide accessible information for people who have learning disabilities. Healthwatch North Lincolnshire found that practices providing easy-to-read material make patients with learning disabilities feel more supported.
People’s communication needs must be met to encourage take up of screening for all.
Appointments are not accessible to everyone
Healthwatch Greenwich, North Lincolnshire and Wolverhampton found that accessing appointments for cervical screening can be challenging. Patients faced difficulties booking appointments, could not attend them due to caring responsibilities, or couldn’t take time off work.
Healthwatch North Lincolnshire and Healthwatch Bolton also found that not everyone received screening invitations. Reasons for this included healthcare providers viewing patients as difficult or assuming they were not sexually active. One person also said she had been taken off the list due to using a wheelchair.
“I was told that due to the complications of accessing the service as a wheelchair user, I would not be called back, even though I am within the age bracket.” – Healthwatch Bolton
However, Healthwatch Kirklees found the leading concern for wheelchair users and people with physical disabilities were the practical barriers to accessing appointments. A lack of hoists in GP surgeries, as discovered by Healthwatch North Lincolnshire, meant GPs had to make other arrangements. Patients had to be referred to a nearby hospital, receive help from a carer, or couldn’t be screened.
"My own GP surgery doesn't have a height adjustable bed, and I use a wheelchair full time; my husband has to transfer me onto the examination bed.” – Healthwatch North Lincolnshire
Fear of discomfort and embarrassment
People have told us that fear of discomfort and embarrassment has deterred them from getting screened. They felt embarrassed about getting undressed, feared discomfort during screening, or had previous negative experiences.
“I had a previous very unpleasant experience where the nurse did not appreciate that I was uncomfortable. I said it hurt, and she said, ‘It does not!!’” – Healthwatch Essex
Those with experiences of trauma and those who have undergone female genital cutting can find this fear exacerbated, because many services are not trauma-informed, as Healthwatch Islington found. Trauma-informed services take into consideration the impact past trauma, such as sexual abuse or domestic violence, can have on a patient’s experiences. They may offer patients more time or allow them to choose which position they want to be in when screened. People’s experiences can improve if they are able to see a specialist or trauma-informed service.
“I have a specialist who performs the smear test on me because the area is very delicate and prone to issue and as a result is very uncomfortable, but they do their best to accommodate.” - Healthwatch Islington
People who spoke to Wolverhampton also voiced concerns about the gender of the person performing the screening. This was especially true when the fears focused on being touched in an intimate area by a stranger.
"Modesty is so much a part of my culture and I find it hard to overcome years of condition about certain things being kept for myself or for my marriage." Healthwatch Islington
Our new campaign to address barriers to cervical screening
In November, NHSE set their ambition to eliminate cervical cancer by 2040. The key to achieving this will be making it as easy as possible for people to get the lifesaving HPV vaccination and increasing cervical screening uptake.
Working with local Healthwatch, we want to support their commitment. We will run a campaign this year to address cervical screening barriers and improve access.
As part of this work, we have commissioned 10 local Healthwatch to interview the most vulnerable groups of women to understand their experiences in more detail. We will also poll women who have never attended or are hesitant about attending screening.
We will report our findings in full later this year.
Share your story
If you recently had a cervical screening or have decided not to attend one, we’d love to hear from you.
