Everyone deserves timely cancer diagnosis, compassionate treatment and the chance to live a healthy life. But new research raises serious concerns about whether people with learning disabilities are receiving the care they need and deserve.

A worrying picture of inequality in cancer care

A recent study led by the University of Surrey has highlighted significant inequalities in breast cancer care, including for people with learning disabilities.

According to a BBC News report, researchers examined the medical records of more than 86,000 patients and found that people with a learning disability waited, on average, 18% longer for a breast cancer diagnosis after reporting symptoms to their GP.

One in four patients with a learning disability waited 29 days or more for a diagnosis. That is 10 days longer than the general population.

The research also found that, after diagnosis, patients with learning disabilities waited longer to begin treatment.

These figures represent more than statistics. They raise important questions about access, communication, reasonable adjustments and whether healthcare services are truly meeting the needs of people with learning disabilities.

Cancer can affect anyone. Everyone deserves the same opportunity to have symptoms taken seriously, receive an early diagnosis and access appropriate treatment.

Why might people with learning disabilities face additional barriers?

People with learning disabilities have the same right to good healthcare as everyone else. However, some may face additional barriers when trying to explain symptoms, attend appointments or understand complex medical information.

It is important to recognise that people with learning disabilities are not all the same. Some communicate verbally, while others may use communication aids, pictures, signs or support from someone they trust.

There are several areas where healthcare services need to consider whether they are providing the right support.

1. Communication that meets people’s needs

Medical appointments can be confusing and stressful, particularly when healthcare professionals use complicated language, unfamiliar medical terms or explanations that are difficult to understand.

Some people may find it difficult to describe pain, explain changes in their body or understand why further tests are needed.

Healthcare professionals should use clear, accessible language, allow enough time for conversations and check that information has been understood.

Easy Read information, pictures, communication passports and other appropriate communication aids can help people understand their symptoms, choices and treatment options.

Accessible communication is not an optional extra. It is an essential part of safe and inclusive healthcare.

2. Taking symptoms seriously

People with learning disabilities must be listened to when they say something is wrong.

Changes in behaviour, sleep, appetite, mood or daily routines may sometimes indicate pain or an underlying health problem, particularly when someone finds it difficult to describe their symptoms verbally.

Family members, carers and support workers may notice changes that others do not. Their observations can be valuable, but they should complement—not replace—listening directly to the person.

Healthcare professionals must avoid making assumptions that symptoms are simply part of someone’s disability, behaviour or existing health conditions.

Persistent or unexplained symptoms deserve appropriate assessment and investigation, regardless of whether a person has a learning disability.

3. Making appointments and investigations accessible

Attending a GP appointment, going to hospital or having a breast examination can be daunting.

For some people, unfamiliar surroundings, sensory sensitivities, anxiety or changes to their usual routine can make healthcare appointments particularly challenging.

Services can help by offering:

• Longer appointments where needed.
• Clear information about what will happen before, during and after an appointment.
• Reasonable adjustments to the environment and appointment arrangements.
• Support from a trusted person, where the patient wishes.
• Accessible reminders and follow-up information.
• Extra time to ask questions and make informed decisions.

These adjustments can help people participate more confidently in their healthcare and reduce avoidable barriers to diagnosis and treatment.

4. Understanding the importance of cancer screening

Breast cancer screening can help identify cancer before symptoms develop. However, screening is only effective as a public health service when people can access it and understand what is involved.

People with learning disabilities may need additional information, reassurance or practical support to attend screening appointments.

Healthcare professionals should explain screening in an accessible way, discuss individual needs and help people make informed decisions.

Where someone is eligible for screening, services should not assume that a standard appointment or standard information leaflet will meet their needs.

Screening, however, does not replace the need to investigate symptoms. Anyone who notices a new breast lump, a change in the breast or another concerning symptom should seek medical advice, even if they have recently had a screening appointment.

Reasonable adjustments can make a real difference

In England, healthcare providers have legal responsibilities under the Equality Act 2010 to make reasonable adjustments for disabled people. The NHS also has a Learning Disability Improvement Standard and a legal framework that includes the requirement to identify and meet eligible people’s needs through appropriate support.

For people with learning disabilities, reasonable adjustments should be based on individual needs rather than assumptions.

This might include providing Easy Read letters, arranging appointments at suitable times, allowing a support person to attend, using accessible communication methods or ensuring that important follow-up appointments are not missed.

The NHS should also identify people who may benefit from additional support and ensure that information about their communication and healthcare needs is available to the professionals involved in their care, with appropriate safeguards for privacy.

These measures are practical steps towards making healthcare more equal, respectful and effective.

Families and support workers have an important role

Families, carers and support workers can play a valuable role in helping people recognise changes in their health, prepare for appointments and understand medical advice.

They may be able to help someone explain symptoms, remember questions or communicate their preferences.

However, responsibility for overcoming barriers to healthcare should not fall entirely on families or paid support staff. Healthcare services must be equipped to work with people with learning disabilities and provide appropriate support themselves.

People with learning disabilities must remain at the centre of decisions about their bodies, health and treatment. Their views, wishes, dignity and right to make decisions must be respected.

Support should empower people to participate in their care, not exclude them from conversations about their own health.

What needs to change?

The findings of this research should prompt healthcare organisations, policymakers and professionals to look closely at how people with learning disabilities experience cancer care.

There are several important actions that could help address these inequalities.

First, identify and remove barriers to diagnosis. Healthcare providers should review waiting times and investigate whether patients with learning disabilities experience unnecessary delays at any stage of their care.

Second, improve staff training. Professionals need appropriate training in learning disabilities, accessible communication, reasonable adjustments and recognising when symptoms require further investigation.

Third, make information accessible. Cancer awareness materials, screening invitations, appointment letters and treatment information should be available in formats that people can understand and use.

Fourth, improve coordination. GPs, hospitals, screening services and community support teams should work together, with the person’s consent and appropriate information-sharing arrangements, to help ensure that investigations and follow-up care happen promptly.

Finally, listen to people with learning disabilities. Their experiences should shape the design and improvement of healthcare services. Research and service reviews must include their voices, not simply make decisions about them without their involvement.

Progress should be measured by whether people receive timely, appropriate and effective care—not just by whether policies have been written.

Moving towards a fairer future

The research from the University of Surrey highlights a serious concern: people with learning disabilities are experiencing longer waits for breast cancer diagnosis and treatment.

While the findings identify an inequality, further work is needed to understand all the reasons behind it and determine which interventions will make the greatest difference.

What is already clear is that people with learning disabilities must not be overlooked, dismissed or disadvantaged when accessing healthcare.

A learning disability should never be a reason for someone to receive a slower response to symptoms, less accessible information or inadequate support.

Every person deserves to be heard. Every person deserves to understand their options. Every person deserves the opportunity to receive timely diagnosis and appropriate treatment.

Inclusive healthcare is not about giving people with learning disabilities special treatment. It is about removing unfair barriers so that everyone has a fair opportunity to receive the care they need.

The challenge now is to turn the research findings into meaningful action, ensuring that people with learning disabilities are recognised, respected and properly supported at every stage of their cancer journey.

Because when it comes to cancer care, nobody should be left behind.

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Source: BBC News report, “Black patients ‘let down’ by cancer care – study”, reporting research led by the University of Surrey. The statistics cited above relate specifically to breast cancer care.

This article is for awareness and information and does not replace medical advice. Anyone concerned about a possible cancer symptom should contact their GP or appropriate healthcare service.