Barriers and inequalities in cervical screening
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
NHSE's ambition to eliminate cervical cancer
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.
An NHS England spokesperson said:
“England is one of the first countries in the world to commit to eliminating cervical cancer with an ambition to do so by 2040. As ever, the public can play their part by coming forward for their HPV vaccines and cervical screening appointments when invited – over 3.4 million people came forward for cervical screening last year, but figures show that three in 10 do not take up this potentially life-saving offer. To achieve our goal of eliminating cervical cancer, we need as many people as possible to take up the offer.
“We know there can be many reasons why people sometimes don’t come forward for screening, and we are working on tackling some of those barriers to make it as easy and comfortable as possible. We have reviewed our invitation letters and information leaflets and we want to improve people’s experience of screening – last year we supported our sample-takers with refreshed guidance and training. There are also studies underway to look at other ways we could carry out screening in the future, such as options for people to take their own sample at home rather than by a nurse or doctor, which might be preferable for some people.
“NHS England is also significantly expanding the number of languages that cervical screening public information is translated into as well as improving the range of other accessible formats that will be available for those with sight or hearing difficulties.
“If you missed your last cervical screening invitation, you don’t have to wait for your next invitation letter. Book an appointment with your GP practice now – it is not too late. Some sexual health clinics also offer screening.”
Healthwatch England's new campaign to address barriers to cervical screening
Healthwatch England will run a campaign this year to address cervical screening barriers and improve access.
As part of this work, they have commissioned 10 local Healthwatch to interview the most vulnerable groups of women to understand their experiences in more detail. They will also poll women who have never attended or are hesitant about attending screening.
They will report their findings in full later this year.
