Marie Keating Foundation Launches Landmark Initiative to Improve Cancer Prevention and Cancer Screening Access for Adults with Intellectual Disabilities – Healthy Living For Life

Celebrating Inclusion: Foundation’s Adults with Intellectual Disability Celebration Day Showcases Progress Toward Equitable Cancer Care

The Marie Keating Foundation is proud to announce the launch of a groundbreaking initiative Healthy Living For Life aimed at enhancing equitable access to cancer prevention information and screening for adults with intellectual disabilities in Ireland.

Healthy Living For Life, which is supported by Gilead Sciences, was officially unveiled at the Foundation’s first-ever Adults with Intellectual Disability Celebration Day which took place on Thursday, June 19^th at The Maldron Hotel, Whitestown Way, Tallaght.

The milestone event was also celebrating the collaborative work between the Marie Keating Foundation, the HSE Cavan Monaghan Disability Servies, people with intellectual disabilities as well as intellectual disability support groups across the country. More than 100 people with intellectual disabilities who participated in the yearlong project also attended the celebration event.

At the heart of this year-long initiative is the creation of user-friendly cancer education materials, adapted from the Foundation’s existing cancer awareness materials. A key milestone was the official launch of Healthy Living for Life—an easy-to-read booklet focused on cancer prevention, healthy lifestyle habits and the national cancer screening services available.   The resource aims to deliver accessible, engaging and empowering health information tailored specifically for adults with intellectual disabilities. The initiative was the brainchild of Health Action Groups in Cavan and Monaghan HSE Disability Services and developed in collaboration with the Marie Keating Foundation. Seven groups Health Action groups across the country collaborated in the project – Cavan Town, Bailieborough, Monaghan, Sligo, Ballinasloe, Galway, Cork and Waterford.

Speaking at the event, Marie Keating Foundation Director of Nursing Services Helen Forristal said:

“This event marks an important moment in our commitment to ensuring inclusive, person-centred cancer care. By working directly with people with intellectual disabilities in developing these materials, we are creating real, lasting change in how health information is delivered and understood. With these resources, we hope to help users learn more about how to take care of their health.

“When we understand more, we feel stronger – knowledge is power. We are urging people to know your body and be an expert on you!”

Clodagh O’Sullivan from Popes Quay Community Hub in Cork, who participated in the initiative, said: “I enjoyed being part of the group because I got to be part of making information easier to understand for others like me who also have a disability. We had great fun doing it. It’s exciting to think that the work we have done will be available to people all over Ireland.”

The resources will now be distributed to individuals, families, healthcare professionals and intellectual disability supports groups and Health Action Groups across Ireland. It will also be freely available on the Foundation’s website, www.mariekeating.ie, ensuring ongoing access and use.

Candidate Advanced Nurse Practitioner (cANP) Gemma Smyth, who played a key leadership role working with the Marie Keating Foundation on the project, said: ““Health literacy is about making sure everyone can understand and use health information in a way that helps them live well. This project brings that to life. It shows the power of inclusion, advocacy, and co-production, where the people with lived experience are involved every step of the way. We’ve seen how ‘nothing about us without us’ isn’t just a slogan – it’s the foundation for change.

“In Cavan Monagahan Disability Services, we work to make every contact count, we work to improve access to health information and services, to help to improve the lives of the people we support. Together, we are empowering people to understand their bodies, make informed choices, and take care of their health.”

The Marie Keating Foundation’s team of specialist nurses have received targeted training to effectively support adults with intellectual disabilities. They will, in turn, train additional healthcare professionals.

This initiative has been made possible through the generous support of Gilead Sciences.

Liz Yeates, CEO of the Marie Keating Foundation, said: “We are deeply thankful to Gilead Sciences for believing in this project and supporting our work to close the gap in access to cancer information for adults with intellectual disabilities. Their commitment has enabled us to take a major step toward achieving health equity for one of the most marginalised groups in our society.”

Dáire Ryan, Associate Director, Market Access Ireland at Gilead Sciences also shared their enthusiasm: “We are delighted to support this vital initiative that promotes inclusive healthcare and empowers adults with intellectual disabilities to take control of their health. By funding this project, we are helping ensure that life-saving information about cancer prevention and screening is accessible to everyone. It’s a powerful step towards health equity in Ireland.”

Mairead O’Connor, PhD, Research Officer at the National Screening Service, who spoke at the event, said: “At the National Screening Service we work to improve equity in screening, to address the barriers to screening and to make screening more accessible to everyone. It’s a key part of our work under our Choose Screening strategy. We are working to make screening more accessible for people with intellectual disabilities and support people to choose screening. Our access officers can support people with disabilities before, during and after screening and we offer supports including longer appointment times, accommodating support persons at appointments, pre-visits and pre-meets with screeners, and information in different accessible formats. We also offer our staff training on disability awareness and we recently developed a guide for carers to help them support the people they care for to access screening.”

Access the new educational resources :

Healthy Living for Life Booklet

Healthy Living for Life Infographic  

Ends

Notes

This project addresses a significant health equity gap identified in the HSE’s 2023 report, Breaking Down Barriers: An Assessment of the Needs of Disabled People in Accessing Population-Based Screening Services in Ireland. The study found that many eligible individuals with intellectual disabilities had never received an invitation to attend screening. Communication barriers, dependency on others to make appointments, inaccessible materials and long travel distances were all identified as challenges preventing equitable access to early cancer detection services.

To address these issues, the Marie Keating Foundation facilitated a series of co-production workshops, where adults with intellectual disabilities and healthcare professionals collaborated to adapt and create new educational materials. These sessions also provided a valuable opportunity to hear directly from the target audience about their experiences and needs.