More funding for epidermolysis bullosa needed

Almost €1 million is needed every year to provide adequate supports for people with the skin condition, epidermolysis bullosa (EB), Debra Ireland has said.

The charity has launched its pre-budget submission in which it urges the government to invest €941,000 annually in home care, outreach care and mental health supports for those affected.

EB is a rare genetic condition that results in the skin becoming extremely fragile. Any friction or trauma to the skin, including rubbing, scratching or heat, can result in painful blisters.

“The skin of people with EB blisters at the slightest touch and some require extensive and extremely painful bandage changes which can take hours,” explained Joanna Joyce, Debra Ireland’s advocacy manager.

The charity is calling for a ring-fenced fund of €786,000 to support home nursing care for those with severe EB. It 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.

“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,” Ms Joyce said.

The charity insisted that adequate 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,” explained Debra Ireland CEO, Jimmy Fearon.

He noted that any surplus could be used to fund additional hours as required next year and into the future. Currently, 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”.

He said that based on the charity’s most recent figures, 84 hours of home nursing care are required every week to meet the current needs of families nationwide.

“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,” Mr Fearon added.

For more on Debra Ireland, click here.