Guidance

Breast screening: reducing inequalities

Updated 20 February 2024

Applies to England

Women need to be able to make a personal informed choice about whether or not they attend for breast screening. In order to do this, they need to receive information in a way that is appropriate for them. See section on communicating with women.

There are a number of reasons why women may not attend breast screening. These may include:

• an informed decision not to attend
• not feeling that breast screening is relevant to them
• not thinking they are at risk of breast cancer
• not understanding the information that has been sent to them
• fear – both of the possible pain caused from the procedure and of breast cancer
• embarrassment or modesty
• lack of time
• apathy towards attendance
• accessibility issues
• cultural or religious beliefs
• sense of fatalism

Making reasonable adjustments

Screening providers must make it as easy for disabled people to use health services as it is for people who are not disabled. This is known as making reasonable adjustments.

Reasonable adjustments can mean making sure screening clinics are held in accessible buildings. They can also mean changes to policies, procedures and staff training to make sure the service works equally well for people with a physical, sensory of learning disability.

In future, providers may also be able to access the Reasonable Adjustment Flag, which is being developed by NHS Digital and NHS England to enable services to record, share and view details of reasonable adjustments across the NHS.

Reducing barriers to attendance

Understanding your population

It is essential breast screening services understand their local population. This will enable them to use information resources more effectively, such as providing information in appropriate alternative languages and working with community groups to further understand the needs or barriers to attendance. Evidence suggests that where the NHS workforce is representative of the community, overall patient experience is improved.

Breast screening services can use health equity audits to support this process, in collaboration with commissioners and local authority public health teams.

One high-level tool which can be used is the general practice profiles available within Fingertips. The practice profiles include deprivation deciles and estimated proportion of non-white ethnic groups within the practice population. Fingertips also details GP practice level uptake or coverage rates. This data will identify those practices with the lowest attendance rates, which may benefit from focused input. Using this information, along with the general practice profiles, may give a useful starting point as to where targeted work can be focused.

Recording ethnicity for women who attend for screening

Breast screening services can record the ethnic origin of women who attend for breast screening on the national breast screening IT system. Training resources are available to support both screening office and mammography staff in this process.

Determining the ethnic origin of women attending breast screening and comparing this to the ethnic diversity of the population at various geographical levels, such as GP practice or local authority, will allow the service to estimate whether particular ethnic groups have lower attendance for screening. This could be particularly useful in highlighting where an understanding of the reasons for non-attendance in certain ethnic groups might be of benefit.

Preferred language

Language barriers may exist for women where English is not their first language. This can impact both their understanding of the invitation information they are sent and also their experience at their screening appointment.

The Breast screening: helping you decide screening invitation information is available in a number of languages other than English. This information can be linked to electronically or screening providers can print off translated versions locally as required.

The female screening lifetime animation, which features breast screening, is also available in other languages.

Women can be flagged on National Breast Screening System (NBSS) as requiring special correspondence to indicate they need information in a language other than English.

The call and recall IT system (BS Select) may hold details of a woman’s preferred language, where this has been populated. It may also indicate if an interpreter is required, which would be useful if a woman needs to attend an assessment clinic. This field is updated by the population index (PI) in the same way as other demographic information and can also be added or amended manually by the breast screening service. Information held on BS Select regarding preferred language is not automatically transferred into NBSS. A comma-separated values (.csv) file can be downloaded for a batch within BS Select and the information can be manually entered into NBSS (see BS Select release notes BSS20-7 for more information).

Breast screening services must try to provide a trained interpreter during assessment appointments when requested for women whose functional language is not English. This should be supported with appropriate written information. Where this is not possible, a comprehensive translation service must be available. An interpreter service is not offered for routine screening appointments.

Where breast screening services have identified a large population group where English is not their first language, they could consider if any local community groups could support the service in increasing awareness of breast screening and to support individuals to access screening.

Additionally, consideration should be given as to how mammographers will support non-English speakers through the screening process when they attend. Providers can consider using pictures in a storyboard to explain the process or, where facilities are available, accessing a video explanation of the process. The host organisation may have access to services such as Language Line where translation services can be accessed by telephone.

Screening locations

Breast screening services have a varying number of static sites (hospital or community clinics) and/or mobile screening units. This often depends on the population served and the geography covered.

Mobile screening units have advantages and disadvantages. Individuals being invited for screening may have personal preferences as to whether they would rather be screened at a static site or on a mobile screening unit. National guidance is available regarding the specifications of a mobile screening unit. Some mobile units may have lift facilities making them more accessible to women with a physical disability.

Advantages of mobile units can include:

• the potential for women to be screened closer to where they live
• the preference of some women to be screened in a non-hospital setting
• their exclusive use for breast screening

Disadvantages of mobile units can include:

• limited options for their siting due to the size of the unit, the operational requirements and facilities for staff and women attending for screening
• funding and downtime required in moving mobile screening units between locations
• limitations on the timings and duration of visits imposed by organisations that own the sites

When considering new screening locations, services should work with commissioners and public health teams within local authorities to evaluate their suitability for the local population as well as whether sites are feasible for a mobile screening unit in terms of access, facilities and set-up costs. It may be useful to gather feedback from community groups and women who do not routinely attend for screening.

When breast screening services are considering a screening site, they must consider:

• public transport links from the areas where invited women live
• car parking availability and costs
• how far women would be expected to travel (estimated from their registered GP practices)
• the acceptability of the area to women due to what facilities are nearby and the security and lighting around the area (which is particularly important in the winter)
• the type of site – health or non-health based location (some women might consider a screening appointment in a supermarket car park convenient while others might find it embarrassing to go for breast screening in such a public space)

All screening locations must be clearly signposted and identifiable. The entrance, reception and waiting area should be welcoming to women attending for screening.

Services should consider developing simple information sheets for all screening locations, for use by staff within the screening office and mammographers. This could provide useful local information, such as:

• nearest toilets
• local public transport information

When services are due to move back to a previously used location, it is recommended they contact the site representative at least 6 months in advance. This is to make sure that:

• their return is expected
• they can stay for the duration of the time planned
• all site facilities and amenities are still accessible (for example, electric supply, water supply, toilets)
• car parking arrangements and fees are known in advance

Appointment times

Breast screening services are commissioned by NHS England and Improvement (NHSEI) to provide a service but are given the flexibility to determine the days and hours of screening appointments. As well as being sufficient to meet the demand, operational hours need to be suitably accessible for the target population.

To improve attendance, evidence suggests the optimal strategy is to offer a traditional office hour appointment (such as 9am to 5pm) with the option of an evening or weekend appointment on request. Satisfaction surveys are a useful method for collecting information about what the local screening population would prefer to have available, with a view to amending the times available where possible. It is recognised that days and hours for screening are limited according to available facilities and workforce.

Women can change their appointment date and time and should be provided with information about how they can do so. As a minimum, women must be able to request a change of appointment by telephone and ideally by email as well. There is no limit to the number of times an appointment can be amended. Difficulties in changing an appointment can impact a woman’s attendance for screening, so services must make sure the process is as straightforward as possible.

Women with a physical disability

All eligible women must be invited for breast screening. Neither breast screening services nor GPs can withdraw women from the screening programme on the basis of a physical disability. Even if previous screening attempts have been unsuccessful, offering a further screening appointment may be advisable if a woman’s condition means her physical disability is variable and a further attempt at screening may be successful.

GPs are asked to provide information about women with a known physical disability to breast screening services in advance of breast screening invitations being sent out. This request is made via the information packs sent to GP practices by breast screening services. Services must make sure all women with a known physical disability, who require additional support for screening, are marked as requiring a special appointment on NBSS. Suitable comments should also be added to explain the adjustments required.

Breast screening services should consider:

• offering an appointment at a static site to allow more space for a companion or carer
• offering an extended appointment clinic slot if required
• contacting the woman beforehand to discuss any adjustments she may require if details of reasonable adjustments are not available
• specific training for mammographers
• that only a partial mammography may be possible

Despite best efforts, it may not be possible for services to achieve a successful set of mammograms for women who are unable to hold the required position for sufficient time. In these circumstances, it will be necessary to have a conversation with the woman explaining the limitations. The breast screening programme offers all eligible women screening with mammography which is the evidence-based method of detecting cancer. On this basis, it is not possible to offer an alternative, such as ultrasound.

Screen reader technology can enable women with visual disabilities to read the digital Breast screening: helping you decide and it is also available in Braille format on request by emailing england.contactus@nhs.net

Women with a visual disability may ask to receive their letters in a larger than standard font size. This should be actioned as a reasonable adjustment request. The standard template letters used within the programme are available to download as Microsoft Word files. The font size can be adjusted to meet the specific individuals’ requirements. Women who have made this specific request can be recorded on NBSS as requiring special correspondence, with the specific requirements recorded in the notepad. This will make sure that this request is noted for future correspondence. Further guidance on using special correspondence field is available.

NHS population screening: support for carers has guidance on assessing capacity, the principles of the Mental Capacity Act and making a best-interest decision.

Opting out of breast screening guidance explains how, and in what circumstances, women can opt-out temporarily or permanently from breast screening.

Women with a learning disability

Providers, commissioners and other partners should refer to Population screening: reducing inequalities for people with a learning disability for information and resources to help women with learning disabilities better understand and access screening. This outlines the steps that breast screening services can take to improve the experience for women with a learning disability.

It is a legal duty to make reasonable adjustments for people with a learning disability.

NHS population screening: support for carers has guidance on assessing capacity, the principles of the Mental Capacity Act and making a best-interest decision.

To help explain breast screening to women with a learning disability, providers can download and print copies of:

• Breast screening: easy guide
• Breast screening: easy read letter templates

Short videos about breast screening can be used alongside easy guides and easy read letters to help understanding. They can be useful for health professionals to watch with women during discussions about screening. One example is the Do The Test – Go For It! film that features women with learning disabilities encouraging others not to be scared of screening and to have the test if they want to.

In future, breast screening providers may also be able to access the reasonable adjustment flag which is being developed by NHS Digital and NHS England to enable services to record, share and view details of reasonable adjustments across the NHS.

GPs are asked to provide information about women with a known learning disability to breast screening services in advance of breast screening invitations being sent out. This request is made via the information packs sent by breast screening services to GP practices. Breast screening services must make sure all women with a known learning disability, who require additional support for screening, are marked as requiring a special appointment on NBSS. Suitable comments should also be added to explain the adjustments required.

The national guidance Population screening: supporting people with a learning disability includes examples of best practice in reducing barriers to screening for women with a learning disability.

Breast screening services can also consider:

• the possibility of providing a video tour of the unit
• having an identified learning disabilities champion within the team, or liaising with the learning disability team within the host organisation

Services can obtain uptake data for women recorded on NBSS as requiring a special appointment by running the special appointments audit crystal report (SR053).

Experimental coverage data for women with a known learning disability is also available.

The PHE Screening blog included examples of local initiatives that breast screening services have implemented to support women with a learning disability.

Opting out of breast screening guidance explains how, and in what circumstances, women can opt-out temporarily or permanently from breast screening.

Women from Gypsy and Traveller communities

There is no routine way for breast screening services to specifically identify eligible women within Gypsy and Traveller communities. Women registered with a GP practice are routinely selected for an invitation when due. Women not registered with a GP practice are not routinely invited for breast screening.

Where services collect ethnic origin group for women attending for breast screening, there is the option to record a woman is from Gypsy or Irish Traveller ethnic origin group in line with national guidance. Breast screening services can work with public health teams within local authorities who may be aware of local travelling communities and may have previously worked with them. There may also be voluntary community and social enterprise (VCSE) organisations with established links with communities. The Friends, Families and Travellers (FFT) charity’s service directory has details of specialist services for Gypsies and Travellers across England.

Nomadic women may have specific complications in accessing breast screening when travelling. This includes nomadic Gypsies, Travellers, boaters and other groups who are on the move. They may not have regular access to correspondence sent to them by post and may not be near their local breast screening service when they are invited for screening. There must be simple processes for women to make or change appointments. Women can ask to be screened at an alternative service and services should accommodate these requests where possible.

FFT has highlighted difficulties people without a fixed address can have in registering with a GP practice. Guidance is available to support services with queries from women not currently registered with a GP practice. There is also national information for women which is available in plain A4 PDF format for those who cannot access information online.

FFT reports that around 40% of its service users have low levels of literacy. Using audio and video tools may make information more accessible. However, FFT also reports significant levels of digital exclusion within Gypsy and Traveller communities in the UK, without additional access support.

Homeless women

There is no routine way for breast screening services to identify eligible women who are homeless. Women registered with a GP practice will be routinely selected for an invitation when due. Women not registered with a GP practice will not be routinely invited for breast screening.

Breast screening services can work with public health teams within local authorities who may have experience in engaging with homeless people. They may also be able to work with local shelters, charities or outreach groups to promote breast screening and breast awareness.

Homeless women may have specific complications in accessing postal communication from breast screening services. They may also have difficulties in registering with a GP practice. Guidance is available to support services with any queries they may get from women who are not currently registered with a GP practice. There is also national information for women which is available in plain A4 PDF format for those who cannot access information online.

Lesbian, gay, bisexual and transgender (LGBT) people

Breast screening services will not be able to identify people as transgender or non-binary.

People registered with a GP practice as female, indeterminant or unknown gender are routinely selected for invitation. People registered with a GP practice as male are not invited for breast screening.

See national guidance for transgender and non-binary people on accessing screening.

A training guide for breast screening services explains what actions they should take when people identified as male or indeterminate are found on BS Select. See Training, BS Select Articles, Male and Indeterminate Genders.

Breast screening services should consider and be sensitive to the experience of LGBT people attending for screening. See the Stonewall sexual orientation guide for the NHS that is designed to improve the health care experience for lesbian, gay and bisexual people.

Women in secure settings

Breast screening services need to be aware of any prisons or other secure settings for women within the catchment area for which they are responsible. See national list of prisons in England.

Women in secure settings may:

• remain registered with their local GP practice and continue to be invited in accordance with the screening round plan
• register with a healthcare practice within the prison (in this situation eligible women would not be identified for invitation on BS Select and would need to be identified by the prison)

It is essential there is good communication between breast screening services and prison healthcare teams.

See national guidance on screening for people in prisons and other secure and detained settings. The breast screening section of this guidance sets out the options for operational delivery.

Services should work with commissioners to agree the system for delivering breast screening to women in secure settings. All women should receive a formal invitation for breast screening and a copy of the Breast screening: helping you decide information before attending the appointment.

Women with severe mental illness

The national guidance Population screening: access for people with severe mental illness has information for commissioners and providers, to help improve access to screening for people with severe mental illness in mental healthcare settings.

Services should work with their commissioners to identify establishments within their area and agree on a system to invite all eligible women. It is important services have good communication routes with all relevant facilities. This increases the chance of successful screening for eligible women. Services should make sure they have completed any required risk assessments before screening to ensure the safety of women attending for screening and staff.

NHS population screening: support for carers has guidance on assessing capacity, the principles of the Mental Capacity Act and making a best interests decision.

Communicating with GP practices

Screening office management guidance outlines the services’ responsibility with regards to communicating with GP practices (GPPs). The GP practice information pack template sets out what practices are asked to provide regarding communications before invitations and in working with women who do not attend their appointment.

Services should make sure this information is sent in a timely manner and in a clear format – preferably electronic. GPPs are well placed to know their practice population needs and to identify why women are not attending.

Providers can print and display breast screening awareness posters. GPPs may be able to display electronic promotional messaging, including the female lifetime screening animation, on waiting room display screens.

Communicating with women

Some women will want to bring someone with them as support during their screening appointment. Arrangements will vary depending on the trust and screening location. It is not uncommon for mobile screening units to be female-only due to their size and the impact this may have on privacy. Services must make sure all members of the team are aware of local policies so women can be given consistent advice. This should be clearly relayed to women and should be available on the services’ website.

Letters and leaflets

National template letters must be used where available. All letter templates are available on the NBSS intranet. No amendments to the text should be made locally, but additional supporting information can be sent out along with the invitation where necessary. The national invitation letter includes a GP endorsement banner which has been shown to increase uptake. The invitation letter provides reassurance that the mammographer at the initial screening appointment will be female.

The national Breast screening: helping you decide information must be used or referenced. It is available online in 10 languages other than English and in Braille on request. Where a woman has indicated that her preferred language is not English and this is recorded on NBSS, the service should provide a copy of this information in the appropriate language (where available) and include this in the screening invitation.

Services must provide easy read versions of letters and leaflets where available and where a need is indicated.

Where possible, a map of the screening clinic location should be included with each invitation letter. It should be of good enough quality and detail to enable women to find the location. Public transport links and car parking details (including costs and payment methods) should also be provided where possible.

Screening services must share any locally developed information materials – such as posters, letters or leaflets – with commissioners and the regional screening quality assurance service (SQAS) while in the draft stage. This helps ensure all materials are consistent with national programme messaging.

Email

It is important women can contact the screening service by methods other than the telephone. A generic email address should be available that is regularly monitored and promoted for use. This is particularly important for women unable to communicate via telephone, such as women with hearing or speech impairments.

Text messaging

All services are expected to be using, or working towards using, text reminders. There is evidence that additional reminders, such as text reminders, in addition to invitation letters, increases attendance. A training article on NBSS for services that have not yet implemented text messaging explains how Hitachi Vantara can support services to extract information from NBSS once a third party supplier has been identified.

See the national guidance NHS population screening: effective text message use that includes text messaging principles for use in all screening programmes is available, suggested wording for text messages to use in breast screening and suggested time frames for routine text reminders to be sent to maximise attendance.

Additionally, services may want to use text messages to:

• contact women who have not booked, or attended, an appointment ahead of a mobile screening unit moving out of a specific geographical area
• promote online satisfaction survey
• inform women of a cancelled clinic at short notice

Websites

Breast screening services should either have a standalone website or a page on the website of their host organisation.

Useful information to include online for eligible women includes:

• contact details of the service
• opening hours
• how to change an appointment
• screening locations
• videos or photos of the local screening unit, so people know what to expect in advance

Before setting up a website it is advisable for services to speak to the communications department within their host organisation. Services should make sure any messages are consistent with national programme messaging.

Social media

Services should consider having a social media presence, such as Facebook, Twitter and Instagram, as an additional way to communicate with women. Statistics show Facebook is the leading social media website in the UK. Approximately 19% of users are women aged 45 and over.

See blog article on how the North Midlands breast screening team used Facebook to increase breast screening uptake.

Services can use social media to tell people about:

• the breast screening process, using national resources such as the female lifetime screening animation or locally made videos
• changes to the services on offer, such as a move to a new mobile screening location
• posts from other organisations that may be relevant and useful, such as breast awareness

Before setting up a social media account, services should speak to the communications department within their host organisation. They should make sure any messages are consistent with national breast screening programme messaging.

Virtual tour of department

Breast screening services should consider creating a virtual tour of their department or mobile screening unit so women know what to expect in advance of their appointment and what the screening procedure entails.

Mobile phones can now be used to create videos of good enough quality.

Keeping these videos short (ideally between 30 seconds and 2 minutes) enables them to be shared on social media and in other forums. Services should be mindful of trying to capture a diverse population group in any videos to make sure they represent the local population.

In the absence of any local material, nationally available resources include:

• female lifetime screening animation
• video outlining the breast screening process

Feedback from women

As part of their contract with commissioners, breast screening services are required to get feedback from women invited for breast screening. This is often collected via satisfaction surveys. All feedback should be shared and discussed within the breast screening service and actions agreed. The results of all feedback should be shared with NHSEI and SQAS along with any actions in response to feedback.

It is important that services try to understand the barriers to attendance for their local populations and surveys to non-attendees can help with this. However, response rates are typically low.

It is important the views of women on all sites for screening (static and mobile) are collected. Collection of patient demographics within the survey can help to try to assess differences between the various cohorts of women invited, for instance, according to age, ethnic origin or disability.

In order to maximise the number of women given the chance to respond, and to help with analysis, services should consider using online survey tools instead of, or in addition to, paper-based collection methods. Links to surveys can be included in routine correspondence with women, in text messages or posted on social media. Services should first discuss this with the communications team within their host organisation.

A mechanism for feedback should be available to all women who attend for screening. All women should be advised what this is when attending their appointment. Mechanisms can include a comments book in the changing room or waiting room area, via email, or online. Services should also consider ways to make this mechanism available to women with low or no literacy or for whom English is not their first language. for example, services could use tools such as smiley face images.

Local networks and community groups

It is suggested that breast screening services should find out what community groups, such as faith-based groups or social networks, are available in their local area. Local public health teams may be able to help provide this information.

These groups can be particularly useful in sharing information about breast awareness, breast screening and for dispelling misconceptions around breast screening and breast cancer. These misconceptions and fears can include:

• some women, despite being in the eligible age range, believing that breast screening is not relevant to them as they do not have a family history of breast cancer
• cultural taboos around breast screening and breast cancer
• fear about breast cancer treatment and the fatality of a breast cancer diagnosis
• fear about the mammogram being painful or feeling embarrassed

Local networks and community groups can help emphasise that mammographers are always female.

Women may feel comfortable travelling and attending an appointment with other people they know. Community groups can talk to their members and work with the local breast screening service as appropriate to see if appointment times can be coordinated to facilitate this. This can be particularly useful for women living in rural areas or for certain communities.

Local business support

Breast screening services can approach local businesses to see if they can help display national posters or other promotional materials. Businesses and locations that can help include:

• beauty salons
• coffee shops
• community centres or village halls
• gyms and sports or leisure centres
• hairdressers
• launderettes
• libraries
• pharmacies
• weight loss groups

Tips for administration staff, reception staff and mammographers

A positive breast screening experience can help to influence a woman’s decision to attend when next invited as well as how they describe their experience to others.

Services should make sure that the screening environment is welcoming, including the reception and waiting areas. The layout should allow for confidential, private discussion. This can be difficult on a mobile screening unit where space is limited. Services should also consider the privacy of changing areas.

The waiting room should contain age-appropriate information and can be used to display general breast awareness information. Consider the population mix of the women to be invited and display information with that in mind.

Good communication and sensitivity are crucial for creating a positive screening experience. Staff should adopt best practice and remember that while they have greeted or screened many women during a day, for the individual women it is their only encounter. All women attending for screening should be welcomed into the unit and kept up to date if there are any unforeseen delays. Women should be put at ease and have all questions answered.

At the initial screening appointment at a mobile unit, women will typically only meet a mammographer. The mammographer should:

• discuss the screening process with the woman and guide her through the process, making sure consent is given
• consider that women may be nervous or embarrassed
• ask before they touch the woman each time, explaining why they need to position the breast to obtain optimal images
• explain how and when the woman will receive her results before she leaves

The mammographer should look for any indications that the individual does not understand the information. Techniques to use include:

• if someone is deaf or hard of hearing, consider writing information down or looking directly at them in case they are able to lip read
• if the person has a carer, friend or relative with them, speak to the individual attending their mammogram rather than to the supporting person

All breast screening staff should have access to relevant training to help them support women attending for screening. This can include additional communication training such as basic sign language or Makaton to support women with hearing impairments. Individual employers may have additional specific training available to staff, which may complement skills already in place. If staff have received training on working with specific population groups, it can help to reassure individuals by displaying certificates, logos, pin badges or lanyards to acknowledge this training.