Navigating Stigma and Access: Cancer Care Experiences of Adults with Intellectual Disability

People with intellectual disabilities face some of the starkest cancer inequities in modern healthcare, being diagnosed at later stages and dying more often from the disease than the general population. A new qualitative study published in the International Journal for Equity in Health reveals how those inequities are manufactured in real time, not through single catastrophic failures but through the everyday friction of healthcare systems that force patients and their families to repeatedly prove they deserve care. The research, led by Natalie M. Gil of the University of Surrey alongside colleagues at King’s College London, captures the lived experiences of adults with intellectual disability who travelled the cancer pathway in England and Ireland, and the family members, carers, and professionals who fought alongside them. Its central finding is as simple as it is damning: access to cancer diagnosis and treatment for this population is not a right that is routinely delivered but a prize that must be continuously negotiated, often by proxy, through what the authors call “advocated-candidacy.”

The study interviewed five adults with intellectual disability and five supporters between August 2024 and September 2025, using semi-structured interviews designed with accessible and flexible approaches. Rather than imposing rigid question schedules, the researchers adapted their methods to participants’ communication styles and needs, a methodological choice that echoes the study’s own message about flexibility. Analysis followed reflexive thematic analysis, blending inductive coding, in which themes emerge from the data itself, with abductive, theory-informed interpretation, in which the researchers moved back and forth between the participants’ accounts and established sociological theory. Two frameworks anchored that interpretation. The first is the concept of Candidacy, a theory of healthcare access which holds that people must be recognised as legitimate candidates for medical attention before care begins, and that this recognition is socially negotiated rather than automatically granted. The second is the Health Stigma and Discrimination Framework, which maps how stigma operates across multiple levels, from interpersonal encounters to institutional structures.

The interviews generated three overarching themes, supplemented by cross-cutting threads of stigma and advocacy. The first theme, understanding lives, context and identity, explored how participants’ sense of self and their histories shaped their encounters with medicine. The second, navigating the healthcare system, documented the sheer effort required to move through screening, referral, diagnosis, and treatment. The third, envisioning compassionate and inclusive futures, captured what participants believed care should look like, and how far current practice fell short. Across all three themes, participants described cancer pathways as contingent and effortful, requiring repeated negotiation of legitimacy at every stage. The title of the paper, quoting a participant directly, distils this experience into a single sentence: “I’m fighting my case all the time.”

That fighting, the researchers argue, is not incidental but structural. Stigma attached to intellectual disability operated upstream of access, shaping whether a person’s symptoms were taken seriously, whether their accounts were judged credible, and how quickly clinicians responded. In practice, this meant that diagnostic suspicion that would trigger urgent investigation in a non-disabled patient could be muted, deferred, or redirected when the patient had an intellectual disability. The concept of diagnostic overshadowing, in which symptoms are attributed to a person’s disability rather than to a new and potentially serious condition, runs quietly beneath these accounts. When a patient’s communication is atypical and their disability is the most visible thing about them, the cognitive shortcut for busy clinicians is to explain away rather than investigate. The study shows the consequences of that shortcut accumulating into delayed diagnosis, and with later-stage diagnosis come poorer survival odds.

The research also documents how fragmented and inflexible systems produced delays of their own. Appointments that could not accommodate additional time, information that was not provided in accessible formats, transitions between services that dropped patients between the cracks, and referral routes designed around an imagined default patient all contributed to care that was adjudicated in crises rather than planned proactively. By the time many participants received attention, the situation had escalated to the point where urgent intervention was unmistakable, a pattern the authors describe as crisis-based adjudication of care. In other words, the system often acted only when inaction had become untenable. For a disease like cancer, where the window for effective treatment narrows with every week of delay, this reactive posture translates directly into avoidable harm.

Perhaps the study’s most original contribution is its conceptualisation of “advocated-candidacy.” In standard accounts of healthcare access, a person becomes a candidate for care when their symptoms and circumstances prompt a clinician to recognise a need. For the participants in this study, recognition frequently depended not on the patient’s own presentation but on the relational labour of others: family members who chased appointments, carers who translated symptoms into clinical language, advocates who sat in consultations and refused to let concerns be dismissed. Advocacy, the authors conclude, was essential to sustaining access, but its necessity is itself evidence of systemic failure. When progression through the cancer pathway hinges on whether a patient happens to have a persistent, articulate, and available supporter, access has become contingent on relationships rather than guaranteed by system design. Patients without such supporters, the logic implies, are left to navigate alone a system that has already shown itself unwilling to recognise them.

The theoretical synthesis the researchers offer is more than academic housekeeping. By integrating the Candidacy framework with the Health Stigma and Discrimination Framework, they provide a unified account of how legitimacy for care is unevenly distributed across the cancer pathway. Stigma, in this account, is not a bolt-on ethical concern but a mechanistic driver: it determines who is perceived as a credible candidate, whose pain warrants investigation, and whose follow-up can safely be postponed. This reframing matters because it moves the explanation of cancer inequities away from individual blame, whether of patients said to present late or clinicians said to be prejudiced, and toward the interaction between stigma and system architecture. Inequities, the authors write, are structurally produced through stigma and conditional access to care.

The human texture behind these findings is what gives the paper its force. The plain-language summary accompanying the article, written for readers with intellectual disability, states the situation without euphemism: people with intellectual disability sometimes had to fight to get good cancer care; sometimes they were not listened to or were treated differently because of their disability; family members, carers and advocates often had to help them speak up. But the study also records a quieter, more hopeful current: people with intellectual disability supported one another, shared their experiences, and articulated clear visions of what inclusive care would look like. Services, the participants said, need to listen and to ensure that the care and support people need arrives without a fight. The dignity of that demand, and the fact that it still needs to be made in 2026, is the study’s implicit indictment.

The research was conducted with careful ethical scaffolding. Approval was granted by the University of Surrey Research Innovation and Governance Office in August 2024, and the authors acknowledge the contributions of community learning disability organisations, professionals who facilitated recruitment, and Patient and Public Involvement and Engagement contributors who shaped the study and its interview materials. The first author was supported by a funded PhD studentship at the University of Surrey, and co-investigators are affiliated with the NIHR Policy Research Programme Unit on Cancer Awareness, Screening and Early Diagnosis, with one author supported by a Cancer Research UK Career Establishment Award. The article is published open access under a Creative Commons Attribution licence, making the full accounts of participants freely available to clinicians, policymakers, and advocacy groups.

What the authors call for is not another awareness campaign but system-level redesign. Reducing inequities, they argue, requires embedding accessibility, continuity, and reasonable adjustments into the architecture of cancer services, so that access shifts from being negotiated and advocacy-dependent to being routine and equitable. Reasonable adjustments, a legal entitlement in both the UK and Ireland, include longer appointments, accessible information, and coordinated support, yet the study shows these remain inconsistently applied precisely where they matter most. The alternative to redesign is a continuation of the status quo the study documents: later-stage diagnoses, higher mortality, and a population of patients and families exhausted by a battle that should never have been theirs to fight. As one participant’s words make plain, the cost of a system that requires people to plead for care is measured not only in exhaustion and indignity, but in lives.