An Abbeyleix woman is to the forefront of a pre-budget plea to Government to invest €941,000 annually in home care, outreach care and mental health supports for child and adult patients who live with a painful skin condition.
In a pre-budget submission to TDs last Thursday, June 30, Emma Fogarty and Debra Ireland called for a ring-fenced fund of €786,000 to support home nursing care for those with severe epidermolysis bullosa (EB).
The submission is also seeking funding for an EB outreach nurse to support adult patients at a cost of €75,000 and funding towards a clinical psychologist dedicated to supporting adults with EB at a cost of €80,000.
“The skin of people with EB blisters at the slightest touch, and some require extensive and extremely painful bandage changes which can last hours,” said Joanna Joyce, Debra Ireland’s advocacy manager.
“There are currently seven people with a more severe form of EB living across Ireland, including five children and two adults, who need access to a home nursing care package that can deliver bandage changes at home.
“This type of care is highly complex because EB causes multiple wounds on various areas of the body, which are at different stages of healing.
In the submission to Government, Emma Fogarty explained that “there were days that I was hysterical during the bandage change – I was crying, screaming, shaking…and even praying, ‘Please someone, just help me’.
“I even had everyone else in the room crying – my mom, my PA, the EB nurse and a student nurse. That’s so not fair. I don’t want to be the reason people are so upset.”
Debra Ireland’s CEO, Jimmy Fearon, said that the required investment would recognise the unique and specific needs of this small group, allowing for each bandage change to be provided by two nurses and creating secure funding which can respond quickly to additional needs as they arise.
“We are calling on Government to invest €786,240 in secure funding to meet current needs for one year based on two agency nurses delivering each bandage change, which is not always currently possible due to recruitment issues,” he said.
“Any surplus could be used to fund additional hours as required next year and into the future. At present there is no such flexibility and that prevents a timely increase in hours which is necessary given the complex and changing needs of people with severe EB.
“Based on our most recent figures, 84 hours of home nursing care are required each week to meet the current needs of families across Ireland.
“Many children and adults living with EB are struggling to get access to all the services and supports they need, with people often having to fight for these services at an individual level.
“We are calling on Government to invest in additional acute and community supports that will meet the unique needs of these people and their families.”
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