How does the LittleHeroesCare In-Home EB Nurse Pilot Program help DEBRA members?
Due to the rarity of EB (which, based on worldwide figures, is only seen in 1 child for every 17,000 born) many nurses have not come across the disease or received training in the best ways to care for children living with EB.
The LittleHeroesCare pilot In-Home EB Nurse Program is the first of its kind in Australia, funding specialised training for carefully chosen nurses and employing them to work on a regular, ongoing basis with children who are living with EB. Trusted relationships are built between the child, their family, and the allocated nurses and each nurse understands the unique features of their patient’s condition, and how to best minimise the pain and trauma associated with their dressing changes.
Through the pilot program, children living with EB are visited in their own homes, by their carefully chosen nurses, for up to three hours 2-3 times per week to assist with medicated baths and dressing changes. Not only does this provide parents with much needed respite, but if gives them the peace of mind that their child’s wounds are being regularly monitored by trained nurses for early signs of aggressive squamous cell carcinoma.
Families involved in the pilot program have reported improved quality of life with a greater balance of family life versus managing their child’s medical needs. Another invaluable result of the pilot program is seeing parents able to return to being much needed ‘mums and dads’ and that all important safe-haven for their child, as the In-Home EB Nurses take over the unavoidably painful and traumatic medical treatments.
Where to from here?
Following the success of an initial three-month trial, a 12-month pilot of the In-Home EB Nurse Program is now well underway in South Australia, and has recently been expanded into QLD, NSW and VIC.
If your family is living with EB and you would like to find out more about the LittleHeroesCare pilot program and/or other support available to you, please contact Dr Zlatko Kopecki of DEBRA Australia on 08 8161 7015 or email firstname.lastname@example.org
We sincerely thank our partner Little Heroes Foundation and their service partner Healthcare Australia for giving DEBRA Australia and its members the opportunity to contribute to this important pilot program.
For more information head to Little Heroes Foundation.