People with a learning disability are at higher risk of developing bowel cancer, yet face significant barriers at nearly every stage of the care pathway, University of Manchester and Christie NHS Foundation Trust have found.
The population-based study of more than two million people showed individuals with an intellectual disability are more likely to develop bowel cancer, especially before the age of 50.
Funded by the National Institute for Health and Care Research (NIHR) Greater Manchester Patient Safety Research Collaboration (GM PSRC), the study is published in BMC Medicine today (20/05/26). The research team is supported by both the NIHR GM PSRC and the NIHR Manchester Biomedical Research Centre (BRC).
People with an intellectual disability present to their GP more often with symptoms linked to bowel cancer, but are less likely to receive key investigations such as stool tests, urgent referrals, or endoscopy the team show.
They were less likely to be diagnosed through screening programmes and more likely to be diagnosed in emergency settings or even on the date of death.
And they were also more likely to be diagnosed at stage IV, when the cancer has already spread.
Among those with early-stage disease, rates of curative surgery were similar, but survival remained significantly worse for people with an intellectual disability.
For advanced bowel cancer, individuals with an intellectual disability were far less likely to receive systemic anticancer therapy, which may contribute to poorer outcomes.
The findings highlight multiple missed opportunities for earlier diagnosis, including lower use of stool tests used to check for early signs of bowel cancer and fewer urgent suspected cancer referrals.
The researchers used anonymised GP records from a large UK database containing information on about 50 million people.
The records were linked with national data on deaths, cancer, hospital care, ethnicity and deprivation to support the research.
The study also raises concerns that current screening programmes, which often begin at age 50, may not adequately protect people with an intellectual disability, given their higher risk at younger ages.
They also highlight that emergency diagnoses can limit the time available for coordinated treatment planning, which may contribute to poorer survival even when surgery is offered.
However, lifestyle factors linked to early-onset bowel cancer-such as obesity, diet, and physical inactivity-may be more common among people with an intellectual disability, potentially amplifying their risk.
And distinguishing concerning symptoms may be more challenging for people with learning disabilities, though the researchers caution that this does not fully explain the scale of under-investigation.
Lead author Dr Oliver Kennedy, Clinical Lecturer at The University of Manchester and The Christie said: "Our findings show clear and avoidable inequalities in bowel cancer diagnosis and treatment for people with an intellectual disability, and they underline the urgent need for earlier screening and more proactive investigation of symptoms."
Jon Sparkes OBE, Chief Executive of learning disability charity Mencap, said: "This study lays bare the stark truth that people with a learning disability are being diagnosed with bowel cancer too late, too often, and are missing out on chances for earlier treatment that could save lives. We need the NHS, government and cancer services to join us in making inclusive health a priority, acting on these findings and putting the right support in place at every stage of the cancer pathway."
Claire Coughlan, Clinical Lead at Bowel Cancer UK, said: "Bowel cancer is treatable and curable, especially if it is diagnosed early. However, this study makes clear that people with an ID are not only at increased risk of developing bowel cancer; they also face considerable barriers which can lead to later diagnosis and treatment."
Lisa Every and her niece Chloe's story
Chloe Every died aged 27 in 2019, not long after being diagnosed with an advanced form of bowel cancer. She had a learning disability and myotonic dystrophy, a muscle condition known to affect the heart and breathing.
For Chloe's family, the fact that her cancer was only identified at such a late stage is central to everything that followed. Like many people with a learning disability, Chloe was diagnosed when the disease was already advanced, limiting treatment options and reducing her chances of survival. Her family believe there were missed chances to investigate symptoms earlier and to take her health concerns seriously before her condition deteriorated.
Once Chloe was admitted to Queen's Hospital in Romford, those missed chances continued. Her aunt Lisa Every says that Chloe's learning disability and underlying condition were not properly considered when decisions were made about her care. Despite the seriousness of her diagnosis, there was no clear, coordinated plan that took account of her complex needs.
Chloe was left in the hospital's initial assessment unit for six days, far longer than was appropriate. This delay meant she did not receive consistent care under one consultant at a critical point in her illness and contributed to a lack of joined up decision making. At a time when urgent, proactive care was needed, Chloe's treatment drifted.
Her pain was not adequately managed, and she was given medication without a clear clinical reason. Despite her myotonic dystrophy and the known cardiac risks associated with it, staff did not contact Chloe's specialist, who had treated her for many years. This was another missed opportunity to ensure her cancer treatment was informed by her wider health needs.
During her hospital stay, Chloe suffered two cardiac arrests. Before the first, she was not observed in line with her needs by nursing staff. An irregular heartbeat was noted shortly before she was given an enema, but this was not escalated to a doctor. After she was transferred to a general ward, Chloe was again not properly monitored. She later experienced a second cardiac arrest. The causes of either cardiac arrest were never investigated.
Mencap supported Lisa to fight for an inquest into Chloe's death and forced the NHS to revisit a request that had previously been ignored. The subsequent A Level 3 Serious Untoward Investigation by the NHS Trust identified a series of serious failings in Chloe's care. These included poor pain management, lack of specialist input, failures in observation and monitoring, and the fact that the Trust's Learning Disability Admission Pathway was not properly followed when Chloe was admitted.
For Lisa, the experience is marked by repeated moments where earlier action could have made a difference, from diagnosis through to end-of-life care.
'I was told by the head of palliative care not to be distressed if Chloe was not in ITU because she was being moved to a ward, which I assumed would be a palliative ward,' Lisa said.
'When I arrived, Chloe was not on any medical support at all. The nurse in charge did not know Chloe had a learning disability until I told her.
'I was told to go home because the nurse had "11 patients to look after" and that Chloe was "fine". Chloe was then left unmonitored until she was found unresponsive.'
Chloe died shortly afterwards.
Her story reflects wider evidence showing that people with a learning disability are more likely to be diagnosed with bowel cancer late, more likely to experience delays and missed chances for investigation, and more likely to face fragmented care once diagnosed. For Lisa, speaking out is about showing the consequences of those missed chances.
'Chloe was young and she was loved," she said.
'She should have had the same chance as anyone else to be diagnosed earlier and to have her needs properly understood and acted on.'half goes here
