Guidance

Topic 4: equality of access to cervical screening

Updated 14 September 2023

Applies to England

1. Topic 4: learning objectives

1.1 The trainee

The trainee should know about:

• the principles behind informed consent in relation to cervical sample taking
• the practice of female genital mutilation (FGM) and potential complications arising from this

The trainee should understand:

• the information accompanying the cervical screening invitation
• how language, cultural differences and learning disabilities can affect understanding
• the requirement to report FGM in people under 18

The trainee will be able to:

• check that people understand the purpose of the screening test during a consultation

1.2 Guidance for the trainer

Signpost the trainee to further reading and resources on all topics in this section including:

• information about any local initiatives that support people with learning disabilities)
• guidance for supporting people with learning disabilities to access cervical screening
• the HTML version of cervical screening invitation and colposcopy leaflets, which can be viewed and downloaded in large print and used with a screen reader for an audio version
• guidance on removing people from routine invitations
• information from Jo’s Cervical Screening Trust on supporting people to access cervical screening after sexual violence
• promoting access to cancer screenings for people with a learning disability
• the Easy Guide to Cervical Screening, a picture leaflet for people who struggle to read, or who have learning disabilities
• the Keeping Healthy ‘Down Below’ guide from Books Beyond Words, for people with learning difficulties
• the report Person to Person: Promoting Cervical Screening Amongst Minority Ethnic People in Primary Care
• a Report on the Self-reported Experience of Patients from Black and Minority Ethnic Groups (Department of Health)
• the Equality Act 2010
• the PHE Screening blog on ‘Reducing cervical screening inequalities for trans people’
• Jo’s Cervical Cancer Trust information for practice nurses and GPs and films about cervical screening, cervical cancer and HPV vaccination (including language translations)
• the Northern Cancer Alliance (NCA) guidance on promoting access to cancer screenings for people with a learning disability
• programme guidance on supporting people with learning disabilities to access cervical screening and best interest decision making

1.3 Guidance for the mentor

Suggested topics for professional discussion are:

• the demographics of the trainee’s practice and how coverage and uptake could be improved
• the provisions made for people with a learning disability or physical disability in the trainee’s local screening service

Teaching resource

Refer to PowerPoint presentation 4 for subject areas in Topic 4.

2. Making an informed choice

Give people the opportunity to make an informed choice about whether or not to attend for cervical screening. They need to understand:

• why they are being offered screening
• what happens during the test
• the benefits and risks of screening
• the potential outcomes (including types of result, further tests and treatment)
• what happens to their screening records
• the opt out process

If a person has the above information about the programme and chooses not to attend screening, then this is a valid choice and it must be respected.

2.1 Information accompanying the cervical screening invitation

We send an information leaflet with every invitation letter to people called or recalled for routine screening. The leaflet includes an explanation of the benefits and limitations of cervical screening, what happens during the test, and an explanation of results. The leaflet also informs people about the use of screening records for audit and other purposes.

A range of language translations is also available, and alternative formats are available on request (such as braille and audio disks).

2.2 Checking for understanding

Sample takers should support informed choice by checking that people who attend for cervical screening:

• understand the purpose of the cervical screening test and its benefits and limitations
• understand that the procedure involves taking a sample of cells from the cervix to test for hrHPV infection and cervical cell abnormalities
• understand it is not a test for diagnosing cervical cancer

Sample takers may need to provide additional information and support to people on an individual basis.

2.3 People from minority ethnic groups

Many people with a cervix from minority ethnic groups have had negative experiences of cervical screening. Language and cultural differences can affect understanding. It is important that sample takers are aware of this and take measures to try and make sure all people understand the purpose of the screening programme and the procedure for taking the sample.

Sample takers should be aware of the importance of:

• training for primary care teams in cultural awareness in order to acknowledge and understand cultural differences
• the inclusion of cervical screening in health education for minority ethnic people
• providing written information about screening in an appropriate language (if possible)
• language support, if appropriate, for people during sample taking (consent)

2.4 People with a learning disability

All people with a cervix aged 25 to 64, whether they are sexually active or not, are entitled to cervical screening. It is the individual’s decision if they take up their invitation. The individual can make this decision, or it can be a best interest decision made on their behalf by the appropriate people (such as the person’s family, carer, and or GP).

Sample takers should understand that people with a learning disability:

• have the same right of access to cervical screening as other eligible people
• cannot be assumed to be sexually inactive, and even if they are sexually inactive they are still entitled to cervical screening
• are entitled to accessible information to make their own decision about cervical screening
• may require reasonable adjustments to support them having screening

If a person is not able to make a decision themselves, the relevant people can make and record a best interest decision on their behalf. Sample takers should seek specialist advice if necessary. The community learning disability team should be able to support this.

An ‘easy read’ leaflet is available which has been designed by and for people with a learning disability, for use with their family members or carers. The leaflet aims to help them to make their own decisions about cervical screening, and to prepare them for the screening process.

An editable easy read version of the cervical screening invitation letter is available for use as a template to invite people who have a learning disability. If requested, the easy read invitation letter should be sent along with the easy guide instead of the standard national invitation letter and leaflet.

3. Helping people access screening

3.1 Preparation for people with a learning disability

Sample takers should be aware of the importance of:

• establishing that the person has an understanding of cervical screening
• preparing the individual to have the test

A preliminary visit to the practice or clinic before the individual attends to have the sample taken may be helpful. Scheduling a longer appointment time may also be beneficial, so that the individual has more time to relax and become familiar with their surroundings and with the sample taker.

When the person attends for a test, the sample taker should check for behavioural signs of compliance with the procedure. This is especially important when screening people for whom it may be difficult to ascertain their level of understanding or consent. There are 6 behavioural signs to look for:

• the person is relaxed and cooperative
• the person is willing to get undressed
• the person is willing to be positioned
• the person is able to keep still
• the person is willing to accept having the speculum passed
• the person maintains awareness throughout

Lack of co-operation by the person, or distress in any way, must be recognised as their choice not to have the test. The person should be offered another appointment if they need more preparation and reassurance.

3.2 People with a physical disability

Sample takers who work with people with a physical disability should be confident and experienced in taking cervical samples. A person’s physical disability may prevent them from achieving a position where the cervix can be visualised and a cervical sample taken. This may include people with severe arthritis or raised body mass index (BMI). The sample taker should consider:

• access to the venue (can an alternative be offered?)
• the height of the couch
• the person’s physical limitations
• the possibility of a domiciliary visit
• the need for assistance
• seeking specialist advice if necessary

The sample taker may need to make special arrangements, for example with the local colposcopy service, to take a sample at a clinic where a hoist is available.

3.3 People who are not registered with a GP

The sample taker should:

• give the individual a copy of the information leaflet in an appropriate format
• make sure the individual understands the purpose of the test
• make appropriate arrangements for the individual to receive their test result
• make appropriate arrangements for follow-up if the test result is abnormal
• explain to the individual that they may not receive invitation letters for future screening unless they register with a GP

3.4 Female to male transgender individuals (trans men)

An information leaflet on screening for trans and non-binary people is available. Every person with a cervix and who is within the screening age range is eligible for NHS cervical screening regardless of their gender identity and or gender of registration. However, current screening systems are unable to include individuals registered with the NHS as male. Depending upon the registration gender, separate arrangements may be required for trans men and non-binary people who have a cervix.

A trans man who is registered as a male and who has a cervix will not be automatically invited for screening by the national programme. The GP practice or the healthcare team managing his gender reassignment can offer screening invitations, or he can request screening at the appropriate intervals.

All GP practice staff should understand the screening eligibility criteria and make sure they do offer appointments to trans men, and treat trans individuals with dignity and respect at all times. As the screening programme cannot invite people registered as male, the practice needs to:

• communicate with the screening laboratory to make sure that samples are processed appropriately and that results are returned to the practice rather than the call and recall service
• communicate test results to the individual and make referrals for colposcopy where required
• make sure that local failsafe systems include all people who require further investigations, treatment or follow-up regardless of gender

4. Automatic ceasing from cervical screening for reasons of age

We automatically cease a person who attends for routine cervical screening on or after their 60th birthday if their last test result is normal with routine recall and they have had no recent abnormal results. This is because their next routine test would be due after their 65th birthday. Refer to programme ceasing guidance for further information.

For people who have had previous abnormalities, we only cease them from recall when they have completed the relevant follow up. We invite people for non-routine cervical screening after the age of 65 if they have not completed relevant follow up.

We do not invite people for further tests once they are ceased automatically due to age after attendance. Their result letter includes an explanation why.

We automatically cease people from recall if they fail to respond to a routine invitation sent on or after their 60th birthday. This is because their next routine invitation would be due after their 65th birthday. People ceased automatically due to age after non-attendance can request a final routine test at any time regardless of their age. We cease the person from recall again automatically if the result of the final routine test is normal. The person returns to recall if the result of the final routine test is abnormal until all necessary follow up tests are completed.

5. Other circumstances for ceasing from cervical screening

We can cease a person permanently from the cervical screening programme only for 1 or more of the following reasons, if:

• they have no cervix (for example, people who have had a total hysterectomy, people with congenital absence of the cervix, or trans women (male to female transgender people)
• they have had radiotherapy to the pelvic area for cancer of the cervix, bladder or rectum
• they have undergone a radical trachelectomy for cervical cancer
• they are over 65 with 1 or more abnormal results in their last 3 adequate tests but their GP or gynaecologist advises that they no longer requires screening
• they have asked to be ceased from the screening programme (informed choice)

In all other circumstances (including if the person has withdrawn their consent before or during previous screening appointments), the person is sent another invitation letter in 3 or 5 years’ time.

6. People who ask to withdraw from the screening programme

An individual can request to have their name removed from the screening register. No one else (such as a carer or a relative) can make this request unless they follow the process to demonstrate that ceasing is in the individual’s best interests and they are unable to make an informed choice for themselves.

Examples of circumstances where we continue to invite a person unless they confirm that they wish to withdraw from the screening programme include:

• people who have never had sex with a man
• people with a physical disability that would make taking a sample difficult
• people who have been undergone FGM
• people with a learning disability
• people with a terminal illness (unless the GP judges that an invitation would be distressing)

Health professionals must make sure that they provide people who express a wish to withdraw from screening with sufficient and accurate information to make an informed decision. This includes having had access to the information in the screening invitation leaflet. Health professionals may choose to offer an appointment to the individual to discuss their decision to withdraw from the programme, however an appointment is not a requirement.

7. Reinstatement to screening after a ceasing request

If a person changes their mind about withdrawing from the screening programme, they can ask for a new screening appointment at any time and will return to routine call and recall.

If a person is aged over 65 and has not been screened since the age of 50, they are entitled to a screening appointment if they request one. We do not routinely recall people over 65 (but will offer non-routine screening if they need to complete follow up after treatment for abnormal cells).