Debra has been calling for the Government to invest €810,000 in mental health support, outreach care, and home care for people living with EB in Budget 2024 – an investment that would make an immediate, positive impact for the approximately 300 people living with EB in Ireland.
While we welcome some of the measures announced in the Budget, such as an increase in the income disregard for Carer’s Allowance and the €400 cost of living lump sum payment for people getting the Carer’s Support Grant and Disability Allowance, this Budget does not go anywhere near far enough in addressing the needs of those living with or caring for someone with EB in Ireland.
Joanna Joyce, Head of Advocacy and Policy, said “while these measures may relieve some of the immediate pressures on families, many people affected by EB are still struggling to get the level of care they need, such as mental health support, reliable home nursing care and specialist advice. More specialist supports and a dedicated fund for home nursing care are sorely needed to meet the needs of people affected by EB in Ireland. We are extremely disappointed that the Government has not responded to these needs in Budget 2024”.
However, through our Small ask, big impact campaign we have continued to build more and more political support for investment in EB – Sinn Féin and the Social Democrats included investment in EB in their alternative budgets for 2024 and we have now been invited by Deputy Chris Andrews to make a presentation to TDs and Senators in Leinster House on 24th October 2023 to mark EB Awareness Week.
We couldn’t have done this without our incredible supporters. Thank you again to everyone who has supported our campaign this year- over 1,800 people sent messages to the Minister for Health, Stephen Donnelly, resulting in our meeting request being forwarded by the Minister to the Minister of State for Disability, Anne Rabbitte. We will continue to push for this meeting with Minister Rabbitte to urgently discuss the issues affecting people living with EB in Ireland.
For the second year in a row, we asked the Government to prioritise EB care. By investing €810,000 in mental health support, outreach care, and home care for people living with EB, the Government could have made an immediate, positive impact for the approximately 300 people living with EB in Ireland.
Thanks to your support, over 100 people across Ireland have supported our call for investment by sending written messages that we have turned into a book in support of Debra, while 1,800 of you have sent messages to the Minister for Health online through Twitter and Facebook. A huge thanks to everyone who has supported our campaign by taking this action.
The investment we are asking for is far less than 1% of the 2023 health budget, which was €23.4 billion.
Based on the average of people living with EB in Ireland (300), the investment we are seeking would cost €7.40 per person a day, less than the price of two cups of coffee.
Aoife, living with EB simplex
We are asking the Government to provide funding towards a clinical psychologist at a cost of €80,000 per annum and develop a clear pathway to access specialist mental health supports in the community.
We are asking the Government to fund an EB care coordinator to support people in the community at a cost of €75,000 per annum.
We are also asking the Government to fund an EB outreach nurse to support adults living with EB at a cost of €75,000 per annum.
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 invest in additional acute and community supports that will meet the unique needs of people living with or caring for someone with EB.