For the third year in a row, we are asking the Government to prioritise EB care

Liz Collins, mother of Claudia, who was born with a severe form of EB, has told how the lack of co-ordinated support from the State has made parents ‘prisoners’ in their children’s lives.

Liz has had to deal with a multitude of different agencies and carers in a 20-year battle to secure home nursing care for her daughter Claudia.

“Every chapter of Claudia’s life brings new challenges, dressings have to be done 365 days a year; it’s a horrible place to be, it’s like being stuck in a hole you can’t get out of,” said Ms Collins, speaking as national EB charity Debra launched its 2025 pre-Budget submission.

“EB has shaped our whole lives because it was and still is in control, it is a monster.”

Debra, the charity that supports the family and everyone with the painful genetic condition, claims that the current model of service is pushing families to fight unnecessarily for supports and insists a ring-fenced fund of €600,000 for home nursing care would alleviate some of the heavy burden of this lifelong incurable disease. 

While Claudia, 20, has a level of home care, her parents do not have a care co-ordinator – also seen as central to joining together the different aspects of caring for someone with EB

“Everything is a battle and nothing is straight-forward,” said Dublin-based Ms Collins.

“Carers often feel like prisoners because the current level of care is fragmented, fragile and not properly co-ordinated.

“Many people strongly advocate for their case for support, they might win and get allocated home nursing hours but sometimes there’s no nurses to provide these hours, so it’s outsourced.

“Over the years, we have identified that the managing of a care package, planning, scheduling and communication is key to properly looking after someone with EB.”

People living with EB are missing the essential proteins that bind the skin’s layers together, so any minor friction, movement or trauma causes it to break and blister.

In Claudia’s case (recessive dystrophic EB), skin must be re-bandaged several times a week to prevent blister infection in a painful process taking hours at a time.

The €600,000 nurse-led, home care package, Debra says, would address the current issue where care packages are outsourced to multiple agencies, often lacking co-ordination and resulting in inconsistent service.

Debra is also asking the Government to provide a further €95,000 in the 2025 health budget, to include:

*€45,000/annum for a specialist outreach nurse who would be able to manage complex wounds and infections for adults in the community, reducing the risk of hospitalisation;

*€30,000 for increased psychological support at St James’s Hospital to safeguard the mental health of EB patients, whose quality of life is affected by constant pain;

*€20,000 to provide regional points of contact, support and advice for EB patients in Ireland as up to 15 sub-specialities can be needed for their care.

“The emotional and physical toll on families is significant, with many carers feeling overwhelmed, isolated and out of their depth,” said Debra CEO, Jimmy Fearon.

“We are calling on the Government to prioritise additional acute and regional supports to meet the unique needs of people living with or caring for someone with EB.”