Under-represented Groups

People with disabilities

People with both learning and physical disabilities have a lower participation rate in cervical screening than the general population. NHS Digital data in 2017-18 shows that people with learning disabilities had lower rates of cancer screening than those without – 31% versus 73%.

Earlier research suggested this was due to low health literacy and knowledge about the test as women with learning disabilities were found to be significantly less likely to respond to screening invitations. PHE easy guides and easy read letters are available, and Jo’s Cervical Cancer Trust also has information and resources available online.

Women with physical disabilities can also struggle to access cervical screening. In a survey from Jo’s Cervical Cancer Trust:

• 88% of respondents said it was harder for them to attend
• 63% said they had been unable to attend because of their disability
• 49% chose not to attend due to reasons such as previous bad experiences related to their disability, or worries about how people might react

  Dr Rebecca Leon, GatewayC GP Lead spoke to June Craven, Accessible Information Standard Patient Champion for Breakthrough UK about the barriers to cervical screening and how negative experiences can impact future attendance. 

Key Points:

For people with disabilities, the attitudes and knowledge of both professionals and carers can play a part in the poor uptake of screening, especially in the case of cervical screening where assumptions may be made regarding sexual activity.

For physically disabled people, accessibility can be a major barrier. Healthcare professionals should support patients and consider them experts in their own care; being aware of what reasonable adjustments can be offered will also help for those people who may not be comfortable advocating for themselves.

Consider:

• Whether women with a disability can access cervical screening at your surgery – this includes provision of hoists and step-free access
• If surgeries cannot provide access, where can patients be referred? This could include alternative surgeries, sexual health or hospital services
• Are nurses who do house visits trained to take samples to benefit those unable to leave their house?
• Disability equality training can help staff take steps to reduce inequalities in access
• Provide a space for discussion without assumptions regarding physical or mental ability, and physical sensation (or loss of)
• Consider longer appointments for women with physical disabilities accessing screening

For people with learning disabilities, information and understanding is key. Cervical screening guides are available in easy read and picture story formats (see additional information links below).

Consider:

• How the woman communicates – talking to carers where appropriate
• Which word the woman uses for vagina to avoid misunderstandings
• Offering a pre-visit so the women can have the test explained, see the speculum and sample brush and feel safe and comfortable
• Showing the woman the position she will need to be in when she has the test
• Suggesting the women practices the position at home so she feels more comfortable (this can be done with her clothes on and carers may be able to support this)
• Reassuring the woman that she can have a friend, relative or carer present during the test if she would like to, and that she can listen to music, for example, to feel relaxed
• Offering a longer appointment time if needed

Cervical screening after sexual violence

Being invited for and having cervical screening can be particularly distressing for survivors of sexual violence. Cervical screening can trigger flashbacks or evoke physical and psychological responses – such as panic attacks, dissociation or freezing.
Survivors are also anxious about having to disclose their experience to a healthcare professional.

Emotional Support:

• Respond appropriately to stress responses – this could be discussed before the test itself to prepare both the patient and the professional
• Check in with the patient after the test to discuss how they are feeling, answer any questions, and potentially allow time before the patient leaves the appointment
• Signpost to support services, if necessary

Practical Support:

• Let patients know they can bring someone they trust to the appointment
• Allow for a longer appointment time to give patients time before and after the test
• Be aware that patients may or may not want to disclose their experiences – make any disclosures as straightforward as possible and minimise how much the patient has to say
• Give patients control – discuss comfortable positions, words that might be triggering or areas they would prefer not to be touched and warn them when the test is about to begin
• Give patients privacy and control over the environment – whether the door is locked/unlocked, whether a curtain is pulled around the couch, etc.

Inclusion healthcare

Homeless people, the travelling community, people seeking sanctuary and sex workers

Dr Rebecca Leon, GatewayC GP Lead met with Dr Wan-Ley Yeung, GP Clinical Lead for the Salford Primary Care Together Inclusion service to discuss groups of people that often avoid engaging with healthcare.

INTERVIEW WITH WAN-LEY

Recommendations?

Additional resources

Link: Cervical screening when you have a learning disability, Jo’s Cervical Cancer Trust
Link: Health and care of people with learning disabilities: 2017-18, NHS Digital (2019)
Link: Access to cancer screening in people with learning disabilities, PLOS ONE (2012)
Link: Health and care of people with learning disabilities, NHS Digital (2016)
Link: “We’re made to feel invisible” Barriers to accessing cervical screening for women with disabilities, Jo’s Cervical Cancer Trust (2019)

Link: Cervical screening: an easy guide, Public Health England (2020)

Link: An Easy Guide to Cervical Screening, Books Beyond Words (2021)
Link: Supporting survivors of sexual violence at cervical screening, Jo’s Cervical Cancer Trust