Skin condition sufferers have been ‘cast aside’

A MOTHER has claimed that people battling an extremely painful skin condition have been ‘cast aside again’ after a new report revealed that the annual cost of caring for one patient has exceeded €130,000.

Epidermolysis bullosa (EB), suffered by around 300 people in Ireland, has an estimated economic burden to families and society of €130,021.

Previous research estimated an overall cost of €67,976 per person in the UK, €46,116 in Germany and €49,233 in Italy.

The huge outlay includes a wide range of expenses such as wound management, GP visits, hospitalisation and early retirement.

The University of Limerick study, out on October 24, also shows Ireland is lagging behind other countries by failing to provide a funded bandage scheme for those battling the rare illness.

It coincides with EB Awareness Week this week and comes after no additional funding was allocated in Budget 2024 for EB patients for the second consecutive year.

“We have been cast aside again; my daughter matters, her life matters, people with EB matter, they exist and we’re not going away,” said Liz Collins from Terenure.

Her 19-year-old daughter Claudia’s body is 80 per cent covered in open wounds.

EB is caused by the absence of essential proteins which bind skin layers together, causing breaking and excruciating blistering at the slightest touch.

The ‘Life with EB in Ireland’ report has prompted calls from the charity supporting families for the Government to introduce a €400,000 bandage scheme similar to that in Spain or Australia – where a monthly supply of dressings is delivered directly to a person’s home.

“Of the multitude of obstacles facing people with EB, access to specialised bandages is a significant issue,” said Joanna Joyce, Head of Advocacy with Debra, which commissioned the research.

“They can cost thousands of euro each month and this disproportionately affects those without medical cards.”

The quality of life for those with the illness, the report found, is “profoundly negative” and many adults face challenges around employment prospects, relationships, the pursuit of education and home life.

The study compared the experience of people with EB in five countries (Ireland, UK, Spain, Australia and Austria) and was launched on October 24 at a political briefing in Leinster House hosted by TDs Chris Andrews and Pauline Tully.

Depression has a prevalence of 63 per cent among people with EB, compared to 10 per cent in the general population – and in all five countries, mental health supports were limited.

Debra wants funding for an adult clinical psychologist post (€80,000 per annum) in St James’s Hospital in Dublin.

The report also found that in Ireland, challenges remain in the provision of home nursing care, such as the lack of a contingency plan when nursing staff are unavailable – and to address a lack of EB-trained nurses to replace those who move on.

Debra says a ring-fenced fund of €580,000 a year must be provided to ensure flexible care packages.

“The research draws attention to the high psychological burden placed on those with EB and their carers and also provides a useful comparison of what has been achieved in other countries,” said Dr Darragh Flannery, one of the authors from the Department of Economics at UL’s Kemmy Business School.

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