We were delighted to take part in a recent conference which brought together people with intellectual disabilities, their families, carers, and experts from Ireland and abroad. The event focused shaping ways to improve cancer care and reduce health inequalities for people with intellectual disabilities.
The conference, titled Breaking Barriers: Enhancing Cancer Care for Individuals with Intellectual Disabilities, was hosted by the Trinity Centre for Ageing and Intellectual Disability and funded by the Health Research Board. It took place on 14 May at the School of Nursing & Midwifery, Trinity College Dublin.
This was the first conference of its kind, both in Ireland and internationally, to focus specifically on cancer in people with intellectual disabilities. It was developed with the support of individuals with an intellectual disability. Key topics included the epidemiology of cancer in this group, challenges and supports in cancer screening and early detection, ethical issues, advocacy, and the meaningful involvement of patients and the public.
Our Senior Health Promotion Officer Dr Aoife Collins presented about our three cancer screening programmes – BowelScreen, BreastCheck and CervicalCheck. Aoife explained that increasing health literacy is an important part of our work to improve equity in screening.
In the context of cancer screening, our goal is to support people with an intellectual disability to:
- understand what screening is and who it is for
- clearly understand the screening process and what it can and can’t do
- make an informed choice about whether to take part
- access screening if they decide to take part
- understand their results and what follow-up steps may be needed.
She shared findings from research, including results from IDS-TILDA, a long-term study on ageing in people with intellectual disabilities in Ireland who are aged 40 and over. The research shows that people with intellectual disabilities are less likely to know about or take part in cancer screening.
Aoife provided information about our access officers who can support people with disabilities before, during and after screening. She discussed how we support people with an intellectual disability to access screening, including offering reasonable accommodations such as:
- longer appointment times
- accommodating support persons at appointments
- pre-visits and pre-meets with screeners
- providing information in different formats
- call-backs from our staff.
Aoife outlined the steps we're taking to implement the recommendations of our recent disability needs assessment report and improve the supports we offer people with intellectual disabilities. This includes:
- offering staff training on disability awareness, effective communication and reasonable accommodation
- providing training for our access officers
- creating a guide for carers to help them support the people they care for to access screening
- developing our information in accessible formats such as easy-to-read, plain English and visual stories using photos and videos
- producing videos with Irish Sign Language
- reviewing and updating the information on our websites.
Aoife concluded her presentation providing tips on how to support people with intellectual disabilities to access our three cancer screening programmes. She specified that screening is for people with no symptoms; the symptoms people need to be aware of, and that people experiencing symptoms should contact their GP with any concerns.
To learn more about our work to improve equity in screening visit hse.ie/equityinscreening.