Spotlight: the psychology of why women don’t attend screening

In 2020, the NHS issued a call for anyone eligible for cervical screening to come forward for a potentially life-saving appointment, with nearly a third, around 4.6 million, not taking up their latest test.

Screening for women is a way of finding out if they are at higher risk of a health problem so that early treatment can be offered or information given to help them make informed decisions. This screening can save lives.

At the time, National Clinical Director for Cancer, Professor Peter Johnson, said there are lots of reasons why somebody might not want to come forward – embarrassment, inconvenience, or uncertainty.

Breast, bowel, and cervical screening are the three national programmes available to women. During the pandemic, nearly one million women in the UK missed potentially lifesaving NHS breast screening due to Covid-19 and 43% of women surveyed said they definitely wouldn’t attend cervical screening or feel less likely to attend.

Ever since, screening programmes have been working hard to restore services, sending out invitations to those who may have missed appointments. But Cancer Research UK says now, more people are seeing their doctor with symptoms they are worried about, and they are concerned that some of these patients may have presented later than they would have otherwise, with more advanced disease.

Cancer Research UK says it’s not possible to simply clear the backlog of missed diagnoses because cancer develops over time. However, screening still offers the biggest benefit to catch conditions at an early stage when treatment is more likely to be successful, and, in the case of cervical screening, “sometimes helping prevent cancer developing in the first place”, says Sophia Lowes, health information manager at the charity.

How many people are using screening programmes

Even before the pandemic, uptake on the different screening programmes varied. According to NHS Digital, 2.23 million women aged 45+ had breast screening between 2018-19, a 4.5% increase on the previous year.

Bowel Cancer UK reports that in 2018 an average 59% of people living in Northern Ireland and England who are sent the bowel cancer screening test for free in the post actually complete it, but this drops to 56% in Scotland and 53% in Wales. And Cancer Research UK finds that uptake of this screening is higher in females than males in every age group.

But while cervical cancer rates in Britain have halved between the late 1980s and mid-2000s, progress regarding cervical screening has since been “stalling and stagnating”, according to Cancer Research UK figures. The charity says the data “marks a decade-long lack of progress, including a steep (54%) rise in rates among 25 to 29-year-olds, and suggests these potentially life-saving interventions don’t always reach the people who need them”.

Why women do not attend screening

Reasons that women do not take part in screening are many and complex.  A letter in the post that a smear test or mammogram is due does not guarantee attendance. A lack of time to attend an appointment and a lack of obvious symptoms can result in women not responding to a screening request.

“Reasons women don’t attend screening are multi-factorial. Life gets busy. And if you’re working full time, if you receive a letter from the NHS to arrange a screening test but can’t make the appointment you’ll put that letter to one side,” says Helen Donovan, Royal College of Nursing (RCN) professional lead for public health.

If you don’t have symptoms “you don’t prioritise screening”, says Jennifer Aston, an advanced nurse practitioner for Granta Medical Practices, and a member of the Queen’s Nursing Institute. Getting an appointment at the right time – such as for women with irregular periods who do not know when it is the best time to make an appointment for a smear test – can also prevent screening taking place.

Screening can be uncomfortable, and a poor experience can deter women from having another test, she says.  Another screening deterrent is concerns about its findings.  “Some women fear the diagnosis, and are worried that something is wrong with them, such as an undiagnosed breast lump,” she says.

Ms Aston suggests there are “mixed messages” about cervical screening, because with HPV immunisations people feel “the risk is lower and it is difficult to encourage people to have this screening when they have had the vaccination”.

Concerns about false positive and negative results can also dissuade people from having screening tests.  As Ms Lowes stresses: “Screening is also about informed choice and people taking an active role in their health. Screening has benefits, but also harms.”

Those ‘harms’ can include false positive and negative results – where individuals may be told they have cancer when they do not ,and equally when they may feel falsely reassured that nothing is wrong. There is also the risk of over diagnosis, such as when an individual has a slow growing cancer that may not cause harm in their life time, Ms Lowes says.

Carol Webley-Brown, a nurse at One Health Lewisham, and a member of the Queen’s Nursing Institute, says many BME women are suspicious of screening because they see it as “experimentation following a “history of health tests on BME women”. Domestic violence and sexual abuse are other reasons why women do not want to be screened, she finds.

Ensuring essential screening

Once the pandemic is over, GPs and nurse practitioners can help to ensure women have essential screening – but it’s not a ‘one size fits all’ approach to patients, says Ms Lowes. “It’s important to be sensitive to the practical, cultural, and psychological barriers that exist to having screening. When having that conversation with patients, GPs and nurses can make sure they know the benefits and harms of screening, provide leaflets,  and encourage them to read information about it.”

Doctors and nurses should also create a safe environment to help women feel comfortable about screening, advises Ms Aston. “Screening is not just a task to be carried out, but actually very intimate, and could be interpreted as invasive.

“We need to understand women may have had bad experiences, and take time to explain procedures and help them overcome their fears,” she says.

GPs can support nurse practitioners to encourage women to have screening by having computer systems in place to flag up when a test is overdue during patient consultations. “A brief reminder from a clinician is more powerful than a letter in the post,” Ms Aston says.

Offering flexible appointments “where possible”, helps to encourage women to attend screening tests, says Richard Vautrey, chair of the British Medical Association’s GP committee.

Recognising that it is hard when working to get screening appointments that fit in with family and work, Ms Webley-Brown’s practice extended access, and she used to work 3pm until 8pm as well as running Saturday smear clinics.

Promoting screening

To promote screening before coronavirus, CRUK had a team of facilitators who visited GP practices across the country who carry out training, talk about the different screening programmes, and what practices can do to boost uptake.

To raise awareness about screening, Ms Donovan stresses the importance of nurses taking the lead in the GP practice to make sure women are called and recalled for appointments, while GPs need to make sure nurses have access to appropriate training and education.

Ms Aston would like to see more public information available about screening, a national phone number for people to access information about screening, and better use of social media to publicise its importance.

But while screening can save lives, mistakes can happen. Screening can also result in health scares, or a false negative finding.  While Dr Vautrey supports screening “where evidence is there”, which is reliant on national screening bodies, he suggests that when patients are provided with information about screening but decline to be screened, “we need to respect that”.

Women who want to attend screening can not only be supported by GPs and nurses, but also their employers.  As Ms Webley-Brown says: “Screening is so valuable, and women need to have time to attend appointments. I wish employers would take on board how important screening is and let them have that time.”

Cancer Research UK resources

• CRUK screening webpages have information about the different programmes for the public: cruk.org/screening
• CRUK hub of information on screening for health professionals: https://www.cancerresearchuk.org/health-professional/screening
• A blogpost to help explain overdiagnosis: https://scienceblog.cancerresearchuk.org/2018/03/06/overdiagnosis-when-finding-cancer-can-do-more-harm-than-good/
• CRUK Good Practice Guide for primary care on cervical screening: https://www.cancerresearchuk.org/sites/default/files/engaging_primary_care_in_cervical_screening_final.pdf