Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I thank the Ceann Comhairle for selecting this Topical Issue. Epidermolysis bullosa, EB, is an extremely painful and rare skin disease, unknown to many people. People living with EB are missing proteins that bind the layers of their skin together so any minor friction causes it to break and blister. It is a debilitating and excruciating disease, with no known cure. There are four forms of EB that can vary in severity but all carry their own life-limiting symptoms and life-long pain. EB can effect not only the skin but also a person's internal organs. It is an extremely complex condition that requires specialised care in many cases.

On average we have 300 people in Ireland with EB. Recently Members of this House heard from two powerful EB advocates during a briefing in the audiovisual room, Ms Emma Fogarty and Ms Liz Collins. Ms Fogarty spoke about her experience of being born with a severe form of EB. She provided a searingly honest and moving account of the ways in which her life has been affected by EB and of the pain and challenges she faces on a daily basis. Ms Collins gave a powerful and open account of what it is like to care for her daughter who has severe EB. She explained how this disease can have a profound effect on the physical and mental health not only of the person living with the condition but also on his or her family members.

During the same briefing we heard about a new report from University of Limerick, UL, and Debra Ireland, the patient group supporting people affected by EB. This report reviews the impact of EB on the quality of life and examines access to services and supports across five countries, including Ireland. The study shows that people with EB in Ireland have access to care through specialist clinics in Children's Health Ireland, CHI, at Crumlin and St. James's Hospital and through community health teams and while I wish to commend the work of all the dedicated teams, many families continue to face significant challenges in managing this difficult condition. In particular, the report from UL and Debra Ireland found that Ireland is lagging behind other countries by failing to provide a dedicated EB bandage scheme. It also found that challenges remain in the provision of home nursing care for people with EB, including the lack of contingency plans where nursing staff are unavailable and a lack of nurses trained in treating EB to replace those who move on. The report highlights the significant impact of EB on mental health and shows that people caring for a loved one with EB have a lower quality of life than the general population. It also found that the economic burden of EB is approximately €130,000 per year per person in direct and indirect costs.

In its 2024 pre-budget submission Debra Ireland called for an investment of €810,000 in mental health supports, outreach care and home care for people with EB. In relation to home nursing care, Debra Ireland is seeking ring-fenced funding as this would enable the provision of support that reflects the prevalence and impact of the disease, with resources being made available where a person lives. A ring-fenced fund would ensure that people with severe EB can access the essential and complex home nursing care they need, as those needs change over time. In addition, Debra Ireland estimates that €400,000 in annual funding would be required to run an EB-specific bandaging and dressing materials scheme in Ireland, similar to the one that exists in Australia.

Given the significant impact of this disease, will the Minister for Health commit to providing the additional funding required to meet the needs of people living with EB in Ireland?

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