A recent study has uncovered significant disparities in cancer care for individuals with learning disabilities in England. Conducted by researchers from The University of Manchester and The Christie NHS Foundation Trust, the research indicates that these patients face a higher risk of cancer, particularly before the age of 50. The findings were published on March 15, 2024, in The Lancet Regional Health – Europe, and highlight a concerning trend in healthcare access and treatment outcomes for this vulnerable population.
Utilizing extensive national datasets, the study compared nearly 180,911 individuals with learning disabilities against over 3.4 million matched individuals without such disabilities. The researchers discovered that those with learning disabilities were approximately half as likely to be referred for urgent investigations when presenting with ‘red flag’ symptoms indicative of cancer. Consequently, many were diagnosed at a more advanced stage, diminishing the chances for effective treatment.
The study also revealed alarming statistics regarding life expectancy following a cancer diagnosis. Patients with severe learning disabilities or conditions such as Down syndrome faced significantly shorter lifespans, with most dying within four years of diagnosis. In contrast, individuals without learning disabilities typically survived for around nine years post-diagnosis.
Several cancer types were found to be notably more prevalent among individuals with learning disabilities. Rates of sarcoma were about twice as high, while cancers affecting the central nervous system were found to be three and a half times more common. Testicular cancer rates were also double, and uterine cancer occurred approximately 70% more frequently compared to the general population. Although some cancers, including melanoma and breast cancer, were less common, those affected had up to a fourfold higher risk of mortality after diagnosis.
The study emphasizes that individuals with learning disabilities are over 70% more likely to develop cancer before the age of 50, with particular susceptibility to nervous system, uterine, ovarian, and digestive tract cancers. For instance, cases of oesophageal cancer among those under 50 were more than five times higher in this demographic.
Dr. Oliver Kennedy, the lead author and a Clinical Lecturer at The University of Manchester, expressed the urgency of these findings. “We already know that people with a learning disability face poorer health outcomes, but the burden of cancer in this population is poorly understood. This study is crucial to understanding the immense challenges this vulnerable group faces in cancer care,” he stated.
Principal Investigator Prof Darren Ashcroft, Director of the NIHR Greater Manchester Patient Safety Research Collaboration, reiterated the barriers faced by individuals with learning disabilities in accessing healthcare. These barriers include communication difficulties and the phenomenon of diagnostic overshadowing, where clinicians attribute new symptoms to existing conditions rather than pursuing additional investigations.
On average, adults with learning disabilities die 19 to 23 years earlier than those without, with around 42% of these deaths classified as preventable. Prof Ashcroft highlighted that the study uncovers critical gaps in cancer care that warrant further investigation.
Dr. Kennedy emphasized the implications of missed opportunities for earlier diagnosis. “People with learning disabilities are less likely to be referred for urgent suspected cancer investigations, leading to more advanced-stage diagnoses. Barriers such as insufficient staff training and inflexible appointment systems exacerbate these disparities,” he explained.
Jon Sparkes OBE, Chief Executive of learning disability charity Mencap, addressed the pressing need for improvement. “Cancer is the second most common cause of avoidable death among people with a learning disability. It is unacceptable that late diagnosis and lack of urgent referrals are costing these individuals precious years of life. The NHS must prioritize screening and urgent referrals for those at greater risk.”
The study also included a poignant case study of Annabell Downey, who is currently receiving end-of-life care for terminal cancer. Supported by Mencap in Hexham, Northumberland, she shared her experiences with healthcare professionals. “I visited the doctor numerous times with back pain, but I struggled to articulate the severity. The pain scale was confusing to me, and I didn’t realize my breast pain might be significant,” she recounted.
This research underlines the urgent need for systemic changes in cancer care for individuals with learning disabilities. As the healthcare community grapples with these findings, a call for action is clear: improving early detection and treatment pathways is essential to ensure equitable cancer care for all.
