Thanks to the 2,819 people that have signed.

The Budget was announced on 27th September, and we were listening closely to see if the Government answered our call to invest €941,000 in home care, outreach care and mental health supports for children and adults with EB.

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.

It’s disappointing, but it doesn’t mean our voices have been ignored. 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.

Earlier this month, 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 epidermolysis bullosa (EB) face to get care and support – and called loudly and clearly for investment to improve it. In the coming months, 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.

*EB is a rare genetic condition that makes a person’s skin so fragile that even gentle contact can cause blistering and open wounds. Children and adults with more severe forms of EB wear bandages across most of their bodies to protect the skin and prevent infection. These bandages must be managed daily, with most people requiring a full bandage change at home at least three times each week.

Our open letter to the Minister for Health

Dear Minister Donnelly,

Many children and adults living with epidermolysis bullosa (EB) are struggling to get access to support they desperately need such as reliable home nursing care, specialist advice and mental health support.

We write to call on you to urgently improve services and expand support for people living with EB and their families by setting aside €941,000 in the 2023 Budget to invest in the following:

  1. Creating a ring-fenced fund for home nursing care for children and adults with severe EB to ensure they have access to secure and flexible care.
  2. Funding the vital role of EB Outreach Nurse ensure adults with EB and their families have somewhere to turn when they need advice and support beyond
    specialist treatment, and can get infection assessments at home.
  3. Increase mental health support by funding a clinical psychologist dedicated to supporting adults with EB.

Children and adults living with EB and their families should not have to fight for reliable and adequate care and support for such a serious condition. Any gaps in the care and support they receive can leave people at risk of developing serious complications and seeing their mental health deteriorate.

Please commit to investing vital funds in services and support for people living with EB and their families in the upcoming Budget.

Yours sincerely,
Jimmy Fearon, CEO, DEBRA Ireland