A detailed analysis of the current healthcare and social support services available to people with EB
The EB Butterfly Review shines a light on where EB care and support is strong, where it falls short, and where urgent change is needed. It also sets out clear recommendations to ensure everyone int he EB community get the support they need and deserve.
This ground-breaking research gathers crucial evidence to help Debra advocate for better services and support, ensuring that everyone with EB can access the care they need at every stage of life. Debra have partnered with Ernst & Young (EY) who carried out the research and create a report outlining the research results.
Our priorities for change include:
Progress a coordinated model of care by fully resourcing and managing home care packages. This includes the appointment of a community-based complex care nurse dedicated to EB, to ensure equitable, consistent, and high-quality nursing support across the country.
Fully resource EB interdisciplinary teams in hospitals by filling existing vacancies and extending access to psychology, play therapy, and outreach nursing services. This will ensure that people with EB and their families have access to the full spectrum of care they need.
Ease the heavy costs of living with EB by introducing a National Bandage Scheme, adding EB to the Long-Term Illness Scheme, and increasing medical card eligibility. These changes would make a vital difference for families currently struggling to meet the cost of essential treatments and supports.
Invest in the development of education programmes for community healthcare workers, to improve knowledge and awareness of EB. Alongside this, develop clear guidelines for transitioning between child and adult services, ensuring continuity of care across life stages.
This research will help Debra to:
A detailed analysis of the current healthcare and social support services available to people with EB
A review of best practices in EB care, both in Ireland and globally
Clear, actionable recommendations for improving services, along with an assessment of the costs involved
An executive summary that distills the key findings and recommendations
