Minister of State at the Department of Children, Equality, Disability, Integration and Youth with responsibility for Disability, Hildegarde Naughton T.D. officially opened the Breaking Barriers conference in May which was hosted by the Trinity Centre for Ageing and Intellectual Disability (TCAID) at Trinity College Dublin’s School of Nursing and Midwifery.
Pictured: Prof Damien Brennan, Prof Brian O'Connell, Minister Hildegarde Naughton, Mei Lin Yap, Dr Martin McMahon and Prof Mary McCarron.
The conference addressed a critically important and under-explored area in healthcare: the intersection of cancer and intellectual disability. Individuals with intellectual disabilities, their families, carers, and professionals came together in a shared commitment to improving outcomes and reducing inequalities.
Emerging research consistently highlights a troubling reality: individuals with intellectual disabilities face a significantly higher risk of cancer, experiencing increased prevalence, later-stage diagnoses, and worse outcomes than the general population. Yet, despite these alarming disparities, cancer among this group remains largely overlooked in scientific studies and across policy.
Dr. Martin McMahon, Associate Professor in Intellectual Disability Nursing, School of Nursing and Midwifery, said:
“We are shining a spotlight on the inequalities experienced by people with an intellectual disability in cancer care. It brings together individuals with lived experience of cancer, clinical leaders, national and international researchers, advocates, and policymakers to create dialogue and urgently advance equitable, person-centred cancer care. It is an important step towards breaking barriers in Ireland—one that will resonate both nationally and internationally.”
What are the inequalities experienced by people with an intellectual disability in cancer care?
- People with an intellectual disability typically have difficulty reporting their symptoms, have poor health literacy and often rely on others to identify changes in health / presentation.
- People with an intellectual disability often have multiple health issues and presenting symptoms may overshadow new symptoms (the person’s intellectual disability may be seen as the presenting complaint, rather than the underlying presenting symptoms).
- Communication is typically a major challenge, with many healthcare environments not equipped to provide accessible information or adapt their approach to meet individual needs.
- Health professionals frequently report limited training in working with this population, which can result in misunderstandings, rushed consultations, and unmet needs. Practical issues such as travel difficulties, inflexible appointment systems, and inaccessible facilities further compound the problem.
- At a systemic level, this population remains largely invisible in [cancer] research, health policy, meaning services are rarely designed with their needs in mind.
An exceptional line-up of expert speakers included:
- Professor Maeve Lowery, Oncologist and clinical lead for Trinity St. James Cancer Institute
- Dr. Alyson Maher, Cancer Epidemiologist, and Principal Investigator at Queen’s Cancer Research Institute
- Triona McCarthy, Consultant in Public Health Medicine at the HSE National Cancer Control Programme (NCCP)
- Dr. Maarten Cuypers, Epidemiologist at Radboud University Medical Centre in Nijmegen, The Netherlands
Dr McMahon concluded:
“Through a European COST Action (CUPID – Cancer Understanding Prevention in Intellectual Disabilities), we are working collaboratively to develop a shared research agenda and build the knowledge base needed to drive improvements across the EU and beyond. In Ireland, the National Cancer Strategy explicitly calls for the prioritisation of ‘hard-to-reach’ groups, including those with intellectual disabilities.
“There is now broad recognition across the research, health, and social care sectors that this is a critical area for action. Responsibility for change lies with government bodies, national cancer programmes, healthcare organisations, educators, and researchers—each of whom must play a role in creating a more equitable, inclusive system of cancer care. The Irish Cancer Society are lobbying and leading the call for action through the underserved communities research awards.”