We know that people from some demographics experience higher rates of under-screening and never screening for cervical cancer. This includes individuals from diverse cultural backgrounds, those for whom English is not their first language, those with disabilities, survivors of sexual assault or abuse, survivors of domestic violence, and those of diverse sexualities and genders.

Each person’s unique circumstances significantly influence their decision whether or not to participate in cervical screening. In this section, we explore tailored strategies to engage people effectively, help address their unique needs and overcome barriers to promote equitable access to cervical screening services.

People from diverse backgrounds

Evidence shows that people from diverse backgrounds and those for whom English is a second language may be less likely than the wider population to have regular cervical screening tests.

To help ensure people take up the offer of cervical screening, and return for future appointments, please take the opportunity this campaign presents to discuss, in your teams, any further ways we may be able to collectively improve the way we provide culturally safe, appropriate, and inclusive services. You may wish to discuss insights and learning into what has (or has not) worked for you and your patients.

Caring for patients in a culturally sensitive way is not always straightforward, as cultural factors – such as race, gender, religion, and ethnicity – are specific to each person and they may, or may not, be comfortable talking about them.

As well as a patient’s cultural background, there will be other issues that may be affecting their lives when they are invited for cervical screening, such as their migration or settlement situation, their socio-economic status, and those of their loved ones.

You may wish to take this opportunity to remind your teams that it is OK to ask a patient about their beliefs, as long as it relates to the screening and their accessing of healthcare services.

To facilitate conversations about cervical screening with people from diverse backgrounds who are in the surgery for other health needs you might wish to consider:

• if an online or telephone interpreter would aid a more effective conversation, and if so, would it help if the interpreter was female
• the resources available to you or members of your team to help the patient better understand the cervical screening procedure
• whether longer, or multiple appointment times are available to have the discussion with the patient in the most helpful way for them
• ensuring the patient is aware the appointment is private and confidential, and that any information, including sexual history, will not be shared with their family members
• checking the patient knows they can ask a friend or family member attend the appointment with them if they want to
• how to access educational resources or visual aids to help inform the discussion if this is needed

To inform a conversation where there is little to no information regarding a patient’s cervical screening history on a patient record you might wish to ask or consider:

• the country of the patient’s birth and how long they have been in the UK, especially if the patient is from a country with prevalent practices of female genital mutilation (FGM), also known as female circumcision or cutting
• if they have had any previous experience of cervical screening, and whether that was a positive or negative experience, and what would help them this time
• whether the patient would prefer a female healthcare professional
• whether explaining the concept of confidentiality may help, for example if a patient may be concerned about her husband, partner or family knowing (why) she has visited the doctor

Barriers

People from diverse backgrounds can face extra barriers relating to:

• Knowledge and beliefs about cervical screening:
  • a lack of knowledge of the availability, purpose, importance, and benefits of cervical screening
  • a belief that cervical screening is unnecessary for people without symptoms
  • a misunderstanding or incorrect belief about causes of cancer (such as cancer being contagious, a punishment, caused by promiscuity, or equalling death)
  • beliefs in traditional medicine
• Cultural and social factors:
  • a negative cultural perception about cancer, such as fatalistic or superstitious attitudes (for example, cancer is the will of God, predetermined, or incurable)
  • stigma and taboos around discussing sexual topics
  • fear, shame, and stigma associated with cancer
  • fear, modesty, and embarrassment around the test
  • difficulties with language, communication, and literacy
  • the availability of female healthcare professionals, healthcare professionals who speak their language, and / or (female) interpreters
  • distrust of healthcare professionals due to experiences from their country of origin
  • resistance to using local health services due to perceptions, or experiences, of them not being culturally sensitive
• Practical and logistical barriers:
  • difficulties accessing and navigating the UK healthcare system (particularly for newly arrived patients)
  • competing priorities such as employment, housing, and family (particularly for newly arrived patients)
  • having multiple complex health problems such as chronic diseases, and/or physical and mental health consequences of trauma, violence, and sexual abuse (particularly for patients who have newly arrived as refugees)
  • logistical concerns, such as lack of transport, difficulties getting to the appointment, organising childcare if necessary

Overcoming the barriers

People who have experienced female genital mutilation

Female genital mutilation (FGM) is a procedure where female genitals are deliberately cut, injured, or changed, but there’s no medical reason for this to be done. It’s also known as female circumcision or cutting, and by other terms, such as Sunna, Gudniin, Halalays, Tahur, Megrez and Khitan, among others.

This practice has notable prevalence in nations like Somalia, Gambia, Egypt, Eritrea, Mali, Sierra Leone, Ethiopia, and Sudan. Additionally, some regions in the Middle East and Asia also engage in this practice.

Women who have experienced female genital mutilation may face barriers to screening associated with psychological trauma, pain (real or anticipated) and embarrassment. Women who have experienced type 3 FGM (where the labia have been sewn together to make the vaginal opening smaller) may physically be unable to have a speculum examination.

Across the UK there are specialist National FGM Support Clinics who are equipped to offer specialist support services for women with FGM. More information can be found on the NHS website.

To inform a conversation where there is little to no information regarding their cervical screening history on a patient record, you might wish to ask or consider:

• if the patient is from a country with prevalent practices of FGM
• asking the patient if they have had traditional cutting or circumcision
• if they have had any previous experience of cervical screening or gynaecological experiences, whether that was positive or negative, and what would help them this time
• whether the patient would prefer a female healthcare professional
• whether explaining the concept of confidentiality may help, for example if a patient may be concerned about her husband, partner or family knowing (why) she has visited the doctor

To facilitate conversations about cervical screening with people who have experienced FGM who are in the surgery for other health needs, you might wish to consider:

• if an interpreter would help to have a conversation more effectively, and if they should be female
• the resources available to you or members of your team to help the patient better understand the cervical screening procedure
• whether longer, or multiple appointment times are available to have the discussion with the patient in the most helpful way for them
• ensuring the patient is aware the appointment is private and confidential, and that any information, including sexual history, will not be shared with their family members
• checking the patient knows they can ask a friend or family member attend the appointment with them if they want to
• how to access educational resources or visual aids to help inform the discussion if this needed
• emphasising that the patient can pause or stop cervical screening if feeling distressed, in pain, or unsafe at any point
• reassuring the patient that it’s fine if they can’t have the screening during the first appointment, and they can try again later at their own pace

Further guidance on starting a conversation about FGM can be found in the Department of Health and Social Care’s FGM Safeguarding and Risk Assessment – Quick guide for health professionals.

Barriers

People who have experienced FGM can face extra barriers relating to:

• psychological trauma
• pain due to scar tissue and infection
• anticipation that the cervical screening test will be painful/uncomfortable/difficult
• embarrassment associated with FGM (such as anticipating a shocked reaction)
• fear of reprisal for members of their community or family who facilitated their FGM

Overcoming the barriers

People with a disability

People with a disability are less likely to participate in cervical screening.

A patient’s disability may mean that they require adjustments and / or additional support to access screening.

You may wish to take the opportunity this campaign provides to remind your teams that it is OK to have candid conversations about a patient’s disability, as long as they are comfortable to do so, to ensure cervical screening is sensitive to their needs, and is as comfortable experience as possible for them.

To facilitate conversations about cervical screening with people with a disability when they are in the surgery for other health needs you might wish to consider:

• appointments that are longer, or multiple appointments, to help have discussions with the patient
• checking if the patient is aware they can have a carer, relative, friend, or someone else attend the appointment with them if they want to
• whether the patient is aware of the adjustments and equipment that are available for them

To inform a conversation where there is little to no information regarding their cervical screening history on a patient record you might wish to ask or consider:

• the patient’s ability to transfer onto a bed, hold their legs in a comfortable position, or lay on an examination table
• asking them about their previous cervical screening or gynaecological experiences
• what adjustments might be needed to make their experience as comfortable as possible including any equipment which could help

Barriers

People with disabilities can face extra barriers relating to:

• Accessibility and equipment:
  • lack of suitable screening equipment and facilities such as adjustable beds and hoists
  • reliant on accessible transport which could limit access to screening appointments
  • physical, sensory, and communication barriers
• Information and awareness:
  • availability of accessible, plain English information and resources in other formats (for example, Easy Read, video, and audio), including, where sent locally, invitation and recall/reminder letters
  • low awareness or comprehension of the importance and benefits of screening
  • low awareness of caregivers and family on the importance and benefits of screening for people with disabilities
  • carer assumptions that people with disabilities don’t need to undergo cervical screening as they are not sexually active
• Psychological and emotional factors:
  • fear of stigma if people disclose their sexual history
  • fear or embarrassment of the test
  • history of sexual assault
  • the cervical screening test being painful and traumatic due to their disability
  • bad experiences with healthcare providers in the past
  • carer and/or health professional’s assumptions that people with disabilities, particularly intellectual disabilities, may not be able to tolerate the test

Overcoming the barriers

People of diverse sexualities and genders

People of diverse sexualities and genders are less likely to have regular cervical screening tests than heterosexual people. This is particularly the case for people who have never had sex with men. Transgender men who have a cervix are even less likely to have regular cervical screening tests[3]. This may be in part due to transgender men registered as male with their GP not receiving an invitation through the national screening programme. Those that do undergo screening are more likely to have an unsatisfactory experience.

If you think they would find it helpful, remind your teams that understanding a patient’s gender identity and sexuality can help to make sure we care for them in a sensitive, respectful way. Gender identity and sexuality can change and evolve, and patient records may not be in step with how a person identifies.

It’s OK to ask a patient about their gender identity and sexuality. Asking questions shows that you want to understand and recognise a patient’s gender identity. If you would like more information on how to respectfully ask about sexual orientation and gender identity the LGBT Foundation and NHS England guide ‘If We’re Not Counted, We Don’t Count’ includes further guidance.

To facilitate conversations about cervical screening when people of diverse sexualities and genders are in the surgery for other health needs you might wish to consider:

• appointments that are longer, or multiple appointments, to help discussions with the patient
• if the patient is aware they can have a relative, friend, or someone else attend the appointment with them if they want to
• that only patients registered as female with the NHS will be automatically invited for regular screening meaning transgender men and/or non-binary people with a cervix will have to request a test

To inform a conversation where there is little to no information regarding their cervical screening history on a patient record you might wish to ask or consider:

• previous cervical screening or gynaecological experiences
• refraining from making assumptions about gender identity based on visual factors
• the language you are using to describe the patient’s body parts, ask how they refer to a body part and agree on the language you will use together
• the impact of taking testosterone and the physical changes that may make cervical screening less comfortable. Vaginal atrophy is a common side effect that may make speculum insertion painful. Things that may help include offering a smaller speculum size, offering more lubrication, suggesting the patient inserts the speculum
• emphasising that the patient can pause or stop cervical screening if feeling distressed, in pain, or unsafe at any point
• reassuring the patient that it’s fine if they can’t have the screening during the first appointment, and they can try again later at their own pace

Barriers

People who identify as lesbian, bisexual or are same sex attracted, and people who identify as transgender and have a cervix can face extra barriers relating to:

• misconceptions that they are not at risk of cervical cancer (for example, belief that cervical screening is not necessary)
• misconceptions that HPV is only spread through heterosexual intercourse (for example, incorrect belief that women who have not had sex with men are not at risk of cervical cancer)
• discrimination and social stigma
• fear of negative attitudes of health care professionals
• high levels of psychological distress, experiences of trauma and abuse
• lack of understanding by clinicians about sexual and gender diversity
• heterosexual assumptions by healthcare professionals
• difficulty finding a suitable healthcare provider (for example, accepting, empathetic, non- judgemental)
• previous negative experiences with healthcare providers/healthcare services
• reluctance to disclose sexual orientation or identity
• potential distress for transgender patients caused by the conflict between their sex assigned at birth and their gender identity
• transgender men with a cervix may find speculum examinations painful

Overcoming the barriers

People who have experienced assault or trauma

People who have experienced sexual assault may find gynaecological procedures triggering, leading to reduced participation in cervical screening. For these patients it can feel like another invasion of their body, and there may be similarities between their sexual assault and subsequent forensic examinations and a cervical screening test.

There may be other more subtle triggering factors such as the feeling of someone having power over them and doing something that they do not want to happen and feel powerless to stop[4].

Cervical screening for these patients can feel both intrusive and intimate because of the physical position the patient is in, and the medical equipment used. It may trigger flashbacks, or evoke responses such as a panic attack, disassociation, or freezing.

A patient may never disclose their sexual assault or trauma.

To facilitate conversations about cervical screening with a person who has disclosed their sexual assault or trauma when they are in the surgery for other health needs you might wish to consider:

• appointments that are longer, or multiple appointments, to help have discussions with the patient
• checking if the patient is aware they can have a relative, friend, or someone else attend the appointment with them if they want to.

To inform a conversation where there is little to no information regarding their cervical screening history on a patient record you might wish to ask or consider:

• previous cervical screening or gynaecological experiences
• the language you are using to describe the patient’s body parts, ask how they refer to a body part and agree on the language you will use together
• suggesting the patient inserts the speculum
• emphasising that the patient can pause or stop cervical screening if feeling distressed, in pain, or unsafe at any point
• reassuring the patient that it’s fine if they can’t have the screening during the first appointment, and they can try again later at another appointment at their own pace

If you would like more information on how to support people who have experienced sexual assault through cervical screening The Survivors Trust and The Eve Appeal guide ‘Cervical Screening: A guide for Healthcare Professionals’ includes further guidance.

Barriers

People who have experienced assault or trauma can face extra barriers relating to:

• feelings of anxiety, shame, embarrassment, fear, and vulnerability
• avoidance as a way to cope with trauma
• reluctance to disclose sexual assault
• parallels with the abuse situation/reminder of the sexual assault – for example, perceived loss of control, the power disparity between healthcare professionals and patients, feeling exposed and the physical sensation of the examination
• the test may feel threatening and re-traumatising
• lack of trust, or feeling unsafe
• lack of availability of a female doctor or nurse
• physical pain or discomfort during examination
• healthcare professionals’ lack of knowledge about the impact of sexual assault
• perceived insensitivity of healthcare professionals

Overcoming the barriers

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