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This year, we are asking 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.
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.
Provide access to Complex Care Coordination in the community for people with EB to coordinate their care, regardless of their location.
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.
Extend the Outreach Nurse Service to adults in the community by increasing the nursing post in St James’s Hospital by 0.6 WTE.
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).
Parent (Recessive Dystrophic EB)
