Guidance

NHS bowel cancer screening: identifying and reducing inequalities

Published 5 August 2022

Applies to England

Identifying inequalities

Health inequalities are unfair and avoidable. They exist across a range of characteristics or dimensions, including deprivation, geography and the 9 protected characteristics described in the 2010 Equality Act.

Identifying and addressing health inequalities is a legal duty for all screening services. The Accessible Information Standard states that people with a disability, impairment or sensory loss should be given information in a format they can access and understand and should receive any communication support they need.

Core20PLUS5 is the national NHS England and NHS Improvement (NHSEI) approach to support the reduction of health inequalities at both national and system level. The approach defines a target cohort of the most deprived 20% of the national population plus integrated care system (ICS) specific populations who experience poorer-than-average healthcare but may not be captured in the bottom 20%. These would include inclusion health populations. The approach also defines 5 clinical areas of focus, one of which is early cancer diagnosis.

Core20PLUS5 is also mentioned in NHSEI’s 2022/23 priorities and operational planning guidance which specifically outlines arrangements for preventing ill health and tackling health inequalities.

The NHS population screening inequalities strategy sets out the national approach to supporting local screening services, commissioners and others involved in the provision of screening to address inequalities. The strategy emphasises the importance of ensuring equitable access to screening services and supporting people to make an informed choice about participating in screening.

NHS bowel cancer screening providers, commissioners and other public health specialists should refer to the national strategy and this guidance to support work to identify and reduce inequalities.

Some groups are less likely to attend bowel cancer screening and this may increase health inequalities. Nomadic people, for example, can face additional barriers due to not being registered with a GP or being registered with a GP at a previous address, which greatly extends the time for them to access the service.

Screening inequalities can occur at any point along the screening pathway, from the offer of screening (those not registered with a GP may not receive an offer), acceptance of the initial offer, through to agreement to proceed with further diagnostic testing and surveillance protocols.

Social deprivation is associated with lower participation in bowel cancer screening, along with an associated higher chance of having a bowel cancer.

Health equity audit guidance

NHS bowel cancer screening providers should use the screening health equity audit (HEA) guidance in conjunction with the generic Health Equity Audit Tool (HEAT) to:

• identify health inequalities for the eligible cohort
• assess health inequalities in relation to the screening service
• identify actions to take to help reduce those inequalities

Data reports

The first step towards identifying interventions to improve access to services and outcomes is to identify if there are any inequalities. To do this you need data and to be able to interpret it.

Service providers can access bowel cancer screening data reports from sources such as Fingertips and Cancer Screening Programme National Statistics (CSPNS).

NHS bowel cancer screening providers can also access data reports from within the Bowel Cancer Screening (BCS) IT System, via the Oracle Business Intelligence Enterprise Edition (OBIEE) reporting tool.

Both these sources of data allow users to view measures such as uptake of the initial offer of screening – which is an important measure for health equity.

Subject to access permissions and type of report, these reports allow users to drill down to see data by:

• upper or lower tier authority
• area team
• programme hub
• quality assurance region
• screening centre
• clinical commissioning group
• GP practice

This allows for data analysis to be carried out by the unique characteristics of that group, for example for a single GP practice or group of GPs.

When using uptake to demonstrate a difference in a population’s behaviour, it is important to use the correct measure of uptake. In the bowel cancer screening programme, there are 2 different ways uptake is reported:

1. Longitudinally. This looks at a year’s worth of data in a single block. This is useful when looking for trends over a long period of time, smoothing out any monthly fluctuations (referred to as ‘uptake S02’, provided in CSPNS and Fingertips).

2. Monthly. This looks at the behaviour of a group of people invited in a single month. This is useful when looking at the effect of an intervention while controlling for other variables (referred to as ‘uptake KPI-4’, provided in BCSS OBIEE).

BCSS can now produce uptake reports by:

• indices of multiple deprivation (IMD) quintile
• area, according to the proportion of the population from ethnic minority groups – using the NOMIS dataset
• residents of secure and detained settings

Reducing inequalities

Reducing barriers to screening participation

Screening providers have a legal duty to make it as easy for disabled people to use health services as it is for people who are not disabled. This is called making reasonable adjustments.

In future, providers may be able to access the Reasonable Adjustment Flag, which is being developed by NHS Digital and NHS England to record, share and view details of reasonable adjustments across the NHS. BCSS has the functionality of the flag to help providers to be aware of what reasonable adjustments people may need in order to access screening.

Examples of initiatives aimed at reducing barriers to participation reported include:

• personalised text prompts to non-responders
• working with community projects
• working with prisons to book follow-up appointments
• health promotion activities in areas of low uptake and areas of deprivation
• a community champion approach

Community champions are people who take a proactive role in helping their local area. They can actively promote bowel cancer screening by using their local knowledge to provide messages that people in the community can understand.

Languages, translations and accessible information

Screening providers should make all possible efforts to ensure there is effective communication with people in line with the national guidance Language interpreting and translation: migrant health guide.

NHS England guidance states that health-related information in English which is usually made freely available should be translated where needed into other languages at no cost to the person.

National bowel cancer screening information is translated into other languages, British Sign Language and easy guide versions.

A short animation explaining how to use the bowel cancer screening kit is subtitled in English, British Sign Language and 10 other languages.

Accessible versions of national screening invitation and result letter templates include easy read and British Sign Language.

Improving access for underserved groups

National guidance to help bowel cancer screening providers, commissioners and other partners improve access to screening for people in underserved groups includes:

• Population screening: improving participation in underserved groups (summary of systematic review evidence)
• Population screening: reducing inequalities for people with a learning disability
• Population screening: access for people with severe mental illness
• NHS population screening: information for transgender people
• Population screening: reducing inequalities in secure settings
• NHS population screening: support for carers, which includes guidance on assessing capacity, the principles of the Mental Capacity Act and making a best interests decision

English and translated versions are available of instructions on how to use the bowel cancer screening home test kit.

The Cancer Research UK resource Reducing inequalities in cancer screening also has information and advice on identifying and reducing inequalities.

People with a learning disability

Evidence has shown that screening uptake is lower in people with a learning disability compared to the general population and that death rates from bowel cancer are higher in people with a learning disability.

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

National resources for health professionals to help improve healthcare access for people with a learning disability include guidance to help people with a learning disability to be screened for cancer.

Population screening: supporting people with a learning disability includes guidance and resources for providers and commissioners of any NHS screening programme to help reduce barriers to screening for people with a learning disability, autism or both.

It includes sections on:

• informed choice
• barriers to screening
• improving access to screening and understanding of screening
• working with primary care

To help explain bowel cancer screening to people with a learning disability, providers can download and print off copies of:

• Bowel cancer screening: an easy guide
• Bowel cancer screening: easy read invitation letter template

If possible, these resources should be printed single sided and in colour.

Providers should use the easy guide and easy read letter template, instead of the standard national information resources, to invite eligible people identified by primary care as being known to have a learning disability.

Providers can direct people who cannot read or do not like written words to the Beyond Words bowel cancer screening picture story, which includes a suggested storyline for family members, carers or health professionals to refer to.

The using your bowel cancer screening kit animation explains how to use the home test kit. This short film can be used alongside the easy guide and letter to aid understanding.

Providers can also help improve access to screening for people with a learning disability by checking if they need any assistance to collect a sample, and arranging extra help if needed.

Colonoscopy is the first line test for further investigations. The easy guide to having a colonoscopy helps explain this test to people with a learning disability.

A computed tomography colonography (CTC) scan is offered if an additional test is needed and the person is not able to have a colonoscopy for medical reasons. An easy guide to having a CTC scan includes information about preparing for this appointment for people with a learning disability.

Support to enable people to complete a bowel cancer screening kit

Support and reasonable adjustments that can help people with a disability, impairment or sensory loss to complete a bowel cancer screening kit and participate in screening include:

• signposting to videos with subtitles
• signposting to British Sign Language (BSL) videos
• signposting to bowel cancer screening easy guides for simple language and pictures
• highlighting the opportunity to use a text relay service for people who find talking on the phone challenging
• offering to talk through the process of collecting a screening sample
• offering to send out a guide block (when produced) to support people with visual impairments or manual dexterity issues
• speaking to the GP practice or practice nurse about possibility of taking a sample to the surgery for someone to help with putting the sample in the bottle
• speaking to the local screening centre about the possibility of taking the sample to the screening centre, for someone to help with putting the sample in the bottle, or for them to demonstrate how to complete the kit

Support during follow-up tests

Although the initial screening test is completed at home, bowel scope, colonoscopy and CTC scans are carried out in hospital.

Support and reasonable adjustments that can help people at these appointments include:

• offering a pre-visit to the department before their test to look round and ask questions
• offering longer appointment slots
• offering single room waiting facilities (if possible) to accommodate privacy
• using simple language, avoiding long words and long sentences
• speaking slowly and clearly, stopping to check understanding at regular points
• finding out what word the person uses for parts of the body being looked at, to avoid misunderstandings
• finding out if there is a learning disability liaison nurse in the hospital who can offer support if appropriate
• showing the person the relevant easy guide during the appointment and discussing it with them
• always talking directly to the person rather than a carer, supporting professional or family member
• following the lead of the person with additional needs and going at their pace
• showing the person what the test involves (including showing them any pictures of endoscopes or scanning machines), explaining any noises and what the room might look like
• considering ways to help the person to feel more relaxed and comfortable

Role of primary care

GP practices should inform their local bowel cancer screening hub about eligible people with a learning disability who are registered with them.

Learning disability teams and screening hubs and screening centres should work closely together to ensure reasonable adjustments are made if required. This information should be recorded on the GP IT system to allow the automatic transfer of the information to BCSS via the reasonable adjustments flag. This may include sending out easy guides and easy invitation letters, helping someone when completing their kit or offering support if they need to attend for further investigations.

Cancer Research UK has resources for GPs to support participation in bowel cancer screening.

A good practice guide can be used by GPs who want to be more proactive in supporting people in their practice to access bowel screening and there is a section on adjustments for people with learning disabilities.

Bowel Cancer UK provides information about bowel cancer screening to aid practice and professional development, including links to training and how to book awareness talks.

Screening hubs and screening centres can provide information for primary care. Practice nurses or community learning disability nurses can call the free helpline on 0800 707 60 60 to get details of their local screening centre. They can pass on this information to people with a learning disability and others who need additional support.

Evaluation

When planning changes to how your service operates it is important to decide what outcome you hope to achieve and how you will know if you have achieved it. You will need to consider if the change:

• has any positive or negative impacts that you were not expecting
• is cost-effective
• is sustainable

You will also need to consider what factors influenced the achievement or non-achievement of the outcome while also controlling for other variables, such as time of year.

There are many different ways to evaluate changes depending on the type of change. You can use routine data to measure a change that affects a large number of people. However, the most disadvantaged groups often relate to a small number of people and it may not be possible to use data to see if there is an increase in access to the screening service.

In these circumstances, you can evaluate whether a new process is working efficiently and effectively, or you can evaluate service user satisfaction.

Example 1 – large numbers

The provider can compare uptake before and after an intervention to see if there has been a significant change. However, it is important to consider other factors that might be involved and not simply to assume that the intervention is responsible for any or all of the change.

The provider may notice an increase in the number of people self-referring for screening. In bowel cancer screening there are 2 main types of self-referral: ‘over-age self-referral’ and ‘late responder self-referral’.

Late responders are those who have been invited but do not respond until 6 months or more after their initial invitation. These late responses could be attributed to an intervention, with programme hubs seeing an increase in late responder self-referral test kit requests or people returning test kits 6 months or more after they were initially sent the kit – on or around the time of the intervention.

Example 2 – small to medium numbers

A provider has challenges screening people in prisons and other secure settings. The provider introduces a new initiative, working closely with the prison healthcare teams highlighting the importance of taking part in screening. The provider could:

• gather qualitative feedback from the prison healthcare teams about the organisation of screening and quality of communication
• monitor uptake of the invited population
• gather feedback from the service users about their experience of bowel cancer screening and their participation

Example 3 – small numbers

A provider is made aware of a person with learning disabilities who has been offered bowel cancer screening and wants to take part but needs support in order to complete the test kit and any onward diagnostic testing. The provider develops a new protocol working with learning disability nurses and the person’s carer. The provider evaluates the intervention with the person and also looks to see if the new protocol could improve programme participation for other people with learning disabilities. This may include identifying other people with a learning disability.

The provider may also want to look at feedback from service users, carers and learning disability nurses to understand their experience of the new protocol. If personal connections are critical to ensuring the protocol runs smoothly then the provider may consider if the protocol can be sustained long term when there are staff changes.