Pauline Tully
Question:19. Deputy Pauline Tully asked the Minister for Health if he will consider providing a funded bandage scheme for those battling with epidermolysis bullosa; and if he will make a statement on the matter. [49084/23]
View answerThursday, 9 November 2023
Questions (19)
Written answers
Epidermolysis bullosa (EB) is a rare, life-long genetic condition which causes fragile, blistering skin.
I fully recognise and appreciate the difficulties experienced by patients suffering from this painful condition.
There are approximately 300 patients in Ireland with EB, with around 60 new patients annually.
Children with EB are cared for at the multidisciplinary clinic in Children’s Health Ireland, Crumlin.
Adult patients are treated at a multi-disciplinary clinic in St. James’s Hospital.
Care requires the involvement of many different clinical specialists to extend life span and improve quality of life.
There has been considerable work undertaken to enhance the availability of treatment for those suffering with EB.
For example, in recent weeks the HSE published a rare disease care pathway for the diagnosis and multidisciplinary care of Inherited EB.
I am aware that the Debra Report published in October found that people “with less severe forms of EB often do not have access to bandages”.
The HSE advises that it provides support to people in accessing them, including those with EB.
For medical card holders, bandages may be accessed:
1. through the Public Health Nurse at a local level (under a national tender arrangement), or
2. through their GP for ambulant patients who attend the surgery for wound management and dressing application,
Alternatively, where dressings are not obtainable by patients in the community via either of these avenues, an application can be made through Discretionary Hardship Arrangements.
This also provides for access to dressings not on the Reimbursement List. In some cases, this will require a hospital prescription, or a recommendation from a HSE Tissue Viability Nurse.
All dressings on the Reimbursement list are also available under the Drugs Payment Scheme.