Barry Heneghan (Dublin Bay North, Independent)
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1835. To ask the Minister for Health if she will establish a ring-fenced fund of €600,000 to support home care packages for people living with more severe forms of epidermolysis bullosa, to ensure access to secure, flexible, and coordinated care that adapts to their complex and changing needs; and if she will make a statement on the matter. [58784/25]

Barry Heneghan (Dublin Bay North, Independent)
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1836. To ask the Minister for Health if she will provide annual funding of €20,000 to enable access to complex care coordination in regional centres for individuals living with severe forms of epidermolysis bullosa, ensuring a central point of contact to coordinate multidisciplinary care and reduce the administrative burden currently placed on patients and families; and if she will make a statement on the matter. [58785/25]

Barry Heneghan (Dublin Bay North, Independent)
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1837. To ask the Minister for Health if she will increase funding for psychological support for people living with epidermolysis bullosa (EB) by €30,000 per annum, to expand the clinical psychologist post at St. James’s Hospital from 0.25 to 0.5 WTE, thereby providing dedicated EB-specific psychological care integrated into the dermatology multidisciplinary team; and if she will make a statement on the matter. [58786/25]

Barry Heneghan (Dublin Bay North, Independent)
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1838. To ask the Minister for Health if she will provide annual funding of €45,000 to extend the existing epidermolysis bullosa outreach nurse service to adults in the community, to ensure integrated continuity of care across acute and community settings, reduce hospitalisations, and improve quality of life for those living with epidermolysis bullosa; and if she will make a statement on the matter. [58787/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I propose to take Questions Nos. 1835 to 1838, inclusive, together.

An EB care pathway, approved by the HSE Clinical Forum under the Chief Clinical Officer (CCO) as a national paediatric and adult care pathway in May 2023, sets out the recommended steps in care for people living with EB. However, this care pathway is currently not fully implemented.

The Department of Children, Equality, Disability, Integration and Youth have confirmed that €3m was ring-fenced in the Budget 2025 for targeted services for children under a number of projects. As part of this €3m funding, €125,000 in core-funding has been made available to Debra Ireland, a charity supporting those living with EB in Ireland, this year and going forward.

With respect to the provision of an additional Epidermolysis Bullosa (EB) clinical psychologist, this is an identified need for the service. Currently, an EB clinical psychologist (0.25 WTE) is available for EB patients when they are in crisis.

The Deputy will be aware that €1.5 million has been allocated to rare diseases as part of budget 2025, with an additional €5 million for the implementation of the new Rare Disease Strategy for Ireland. This funding will be utilised for the benefit of all people living with a rare disease including those living with EB. support the provision of care through Ireland’s European Reference Networks (ERNs) for Rare Diseases, bolster the HSE’s National Rare Disease Office, and lay a strong foundation upon which to build following the publication of an updated National Rare disease Strategy. As part of the €5m funding, €700,000 was specifically allocated for EB services. This funding was allocated to provide nursing support to access vital care in the community, to coordinate care between community and acute settings, to extend outreach nursing services to adults with an EB diagnosis and to increase the clinical psychologist post in the dermatology department in St. James’s Hospital.

My Department and the HSE are continuing to engage with the stakeholders to ensure that this funding is utilised to deliver the best possible impact for EB services and those living with EB in Ireland.