Annual pre-budget submission campaign - Debra Ireland
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Our annual pre-budget submission campaign

Each year, we prepare a pre-budget submission for the Government that highlights the investment that is needed to improve services and supports for people living with or caring for someone with EB.

These pre-budget submissions draw primarily on feedback received from people with EB across the country.

For the third year in a row, we are asking the Government to prioritise EB care

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.

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Our "Small ask, big impact" 2024 pre-budget submission campaign

In 2023, 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, we could have made an immediate, positive impact for the approximately 300 people living with EB in Ireland.

How little did we ask for? Less than 2 cups of coffee per person per day.

 

Based on the average of people living with EB in Ireland (300), the investment we asked for would cost €7.40 per person a day, less than the price of two cups of coffee.

Our 2023 Pre-Budget Submission Campaign

In 2022, we asked the Government to invest €941,000 in home care, outreach care and mental health supports for children and adults with EB. 2,819 people signed our petition asking the Minister for Health to invest in EB care.

While there were some short-term measures to tackle the cost of living crisis that we welcome, particularly supports for carers and people on disability payments, there was sadly no mention of funding for EB.

Together, we’ve shined a spotlight on the desperate struggle many people living with EB face to get care and support.

Both Sinn Féin and the Social Democrats included investment in EB in their alternative budgets, which shows the progress we’ve made in drawing political attention to the issue.

We sent our open letter to the Minister for Health, Stephen Donnelly, signed by over 2,800 of our wonderful supporters. A huge thank you to everyone who added their name, and to our incredible advocates Emma Fogarty and Liz Collins for leading our #InvestinEB campaign.

Many children and adults living with epidermolysis bullosa (EB) are making every effort to get access to support they desperately need such as reliable and flexible home nursing care, specialist advice and mental health support. Together, we’ve shined a spotlight on the desperate struggle many people living with EB face to get care and support – and called loudly and clearly for investment to improve it.

We will continue to meet with decision-makers, keep people with EB at the centre of our discussions and push for the investment we know is so badly needed.

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