Thanks to the tireless work of Dr. Rosemarie Watson and her colleagues, the HSE and the efforts of many dedicated people associated with DEBRA Ireland over the years, families living with EB have access to multi-disciplinary, specialist hospital services. Children with EB are treated at the ‘Butterfly Clinic’ in Our Lady’s Hospital for Sick Children in Crumlin and adults at St. James’s Hospital. The value of these specialist services in improving the health and quality of life of people with EB cannot be overstated.
Despite their value however, the hospital services are currently vulnerable. This is particularly so in the case of the childrens’ service in Our Lady’s which, unlike the service in St. James’s, does not have dedicated and ring-fenced funding. We have been making efforts to ensure that key posts in the childrens’ service are filled and that other posts are put on a more secure footing. This is obviously immensely challenging in a period of both budget cuts and the capping of posts within the HSE but we are hopeful that some progress can be made.
We are also currently investigating the effectiveness of support services within the community for people who live with EB. Every family’s experience is different in this regard but we believe that our research study on support services for people with EB, being undertaken by the University of Limerick, will be extremely valuable in developing our understanding of the issues and in helping us to formulate a strategy around them.
In the longer term, we would like to move towards a situation where all parents with a child with severe EB would have the option of removing themselves from the enormous challenges of dressing changes. Download our draft paper on this here