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

I thank the Minister of State. Debra Ireland is an excellent charity. It provides brilliant support to people with EB and their families. As the Minister of State has responsibility for mental health, I want to focus for on mental health issues, a subject I mentioned in my opening remarks.

In a survey conducted by Debra Ireland in 2019, people living with or caring for someone with EB spoke about experiencing feelings of isolation, despair, loneliness, an inability to cope and helplessness when a child is in pain. The pain is excruciating. When Emma was in that day in the audiovisual room, when Debra Ireland was giving a briefing, she talked about how every day she goes through excruciating pain. It can take three to four hours for her bandages to be changed. When the bandages are removed, blisters must be burst, and then ointment and new bandages put on. Obviously, how long it takes to change the bandages depends on the severity of the disease, but it is pain every day. There is bound to be an impact on mental health. A number of international studies have also examined the psychological impact of EB. One such study found prevalence rates of 63.6% for depression, 45.5% for anxiety and a lower quality of life generally for all of those affected by EB.

Debra Ireland provides a grant for counselling and therapy to fill the gaps in the context of what is not provided by the mental health services. It said that the demand for the grant increased by 73% between 2021 and 2022. It is looking for an investment of €80,000 per annum towards a clinical psychologist based at St. James's Hospital. That would have such an impact because there would be a person dedicated to people with EB. I wonder if that is something that could be considered, when it is decided where budget allocations are going?

There was also an EB outreach nurse appointed to Children's Health Ireland at Crumlin but none has been appointed to St. James's Hospital for people who move into adulthood. That would make such a difference because an EB outreach nurse can deliver early intervention, for example, in the case of problem wounds, and therefore reduce the need for hospital visits to access treatment for wounds and possible infections. Again, even an investment in an EB outreach nurse would make such a difference to the people living with the disease.

I have already talked about the bandage scheme. Some of the people say that sometimes when they go to collect their bandages, they are the wrong size or they are not available, and they have to travel then to one of the hospitals to get them. These are small things that could make such a difference to the lives of people with EB and their families.

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