Our 2025 pre-budget submission campaign - Debra Ireland
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For the third year in a row, the Government has failed to prioritise funding for EB care in Budget 2025

This year, we asked the Government to ring-fence €600,000 for EB home nursing care and invest a further €95,000 to ensure holistic integrated care in line with the vision of Sláintecare (2021).

Many people living with EB are struggling to access vital services and supports, with people often having to fight relentlessly to get what they need. 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.

The Government has failed to prioritise additional acute and regional supports to meet the unique needs of people living with or caring for someone with EB. Funding towards essential supports could have alleviated some of the heavy burden of this lifelong incurable disease. The emotional and physical toll on people with EB and their families is significant, and being overlooked by Budget 2025 is yet another blow to them.

Jimmy Fearon, Debra CEO

How little did we ask for?

€600,000

Ring-fence funding for home care packages for people living with more severe forms of EB to ensure they can access vital, secure, and flexible care that adapts to their changing needs.

€20,000

Provide access to Complex Care Coordination in the community for people with EB to coordinate their care, regardless of their location.

€30,000

Increase the clinical psychologist post based in St James’s Hospital from 0.25 to 0.5 WTE, allowing for a dedicated psychology post in the dermatology unit.

€45,000

Extend the Outreach Nurse Service to adults in the community by increasing the nursing post in St James’s Hospital by 0.6 WTE.

Read our full pre-budget submission

Many people living with EB are struggling to access vital services and supports, with people often having to fight relentlessly to get what they need. We are calling on Government to ring-fence €600,000 for EB home nursing care and invest a further €95,000 to ensure holistic integrated care in line with the vision of Sláintecare (2021).

Downlolad download

It’s really unfair, [their] body is already in such a vulnerable position, it’s really frustrating when changing the dressings is a skill that needs repetition, you need to do it again, and again, and wounds change too you know, you can’t just put in a random nurse on the rota, continuity matters.

Parent (Recessive Dystrophic EB)

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