Cancer Screening

Cancer Screening Programs

The NHS offers three cancer screening programs:

• Bowel
• Breast
• Cervical

For people with a learning disability, autism, or other support needs, taking part in these screenings can be challenging. To help, services must make reasonable adjustments.  A reasonable adjustment means making changes to services, environments, or practices to help someone with specific needs access them more easily. It’s about removing barriers so everyone has an equal chance to take part.

For example:

• Providing easy-to-read information for someone who finds reading difficult.
• Allowing extra time for appointments if someone needs more time to understand and communicate.
• Offering wheelchair access or help for someone with mobility issues.

These changes are meant to make things fair and accessible for people with different abilities or support needs.

Why This Is Important

Health Inequalities

People with a learning disability in Northern Ireland face serious health inequalities. They often have shorter lives, higher rates of underweight and obesity, and greater difficulty accessing quality healthcare. These issues are made worse by poor communication, lack of staff training, and limited accessible information.

Accurate data is also lacking, making it hard to understand the full scale of the problem or plan effective services. To reduce these inequalities, we need better data, improved healthcare training, and policies designed to meet the specific needs of people with a learning disability

Cancer Risks

People with a learning disability, autism and other support needs also have a higher risk of certain cancers.  For example, people with a learning disability are at a higher risk of bowel cancer. This increased risk is due to several factors, including:

1. Underlying Health Conditions – Certain genetic conditions associated with a learning disability, such as Down syndrome, are linked to an increased risk of cancers, including gastrointestinal cancers.
2. Longer Life Expectancy – As healthcare improves, people with a learning disability are living longer, increasing the likelihood of developing age-related cancers like bowel cancer.
3. Delayed Diagnosis – People with a learning disability often experience delays in cancer diagnosis due to barriers like communication challenges, lack of accessible information, and healthcare professionals’ lack of training. This can result in cancers being detected at a more advanced stage.
4. Lifestyle Factors – Factors such as poor diet, lack of physical activity, and obesity, which are more prevalent among individuals with a learning disability, can increase the risk of developing bowel cancer.

Efforts to improve awareness, increase screening participation, and provide accessible healthcare can help reduce this risk and improve early detection and outcomes for individuals with a learning disability.

Screening Participation

Data from the NHS highlights the need to increase cancer screening participation amongst individuals with a learning disability, autism and other support needs.

• Bowel cancer screening: 75% of people with a learning disability vs. 83% of the general population.
• Breast cancer screening: 51% of people with a learning disability vs. 67% of the general population.
• Cervical cancer screening: 30% of people with a learning disability vs. 76% of the general population.

Barriers to Screening

Several challenges make it harder for people with a learning disability, autism, or other support needs, especially women, to participate in screenings:

• Screening invitations are not always in accessible formats.
• Booking systems can be difficult to use.
• Time pressures and mobility issues.
• Communication difficulties.

Low participation is also linked to a lack of knowledge or understanding among healthcare workers, carers, and individuals themselves.

• Healthcare workers may not have training to support people with a learning disability or autism.
• Carers may not prioritize screening due to stigma or discomfort discussing related topics like sexual health.
• People with a learning disability, autism, or other support needs may feel afraid or not understand why screening is important.
• Resources like easy-read materials exist but are often underused because staff are unaware of them.
• Concerns about a person’s ability to give consent can also create barriers.

How to Improve Participation

To encourage more people with a learning disability, autism, or other support needs to take part in cancer screenings:

• Provide education, training, and support for healthcare staff and carers.
• Use accessible resources like easy-read guides and picture books.
• Change the focus of screening discussions to be more understanding and less judgmental.
• Raise awareness among healthcare workers about the barriers and the available resources.

Cancer Diagnosis

Hearing that you or someone you care about has cancer can be overwhelming. Having the right support can make a big difference. Support is available through:

• Local services: MacMillan Cancer Centres and other organizations.
• Online resources: Many digital tools and guides exist to help patients, families, and carers. For example, Belfast Trust Cancer Support Service provides easy-to-read resources and tailored support. Also, our TILII Translates Accessible Information Service has worked with the Belfast Health and Social Care Trust on a Cancer Support Service Easy Read.

With the right adjustments and support, people with a learning disability, autism, or other support needs can have better access to cancer screenings and care.