Cystic Fibrosis is an inherited disease, affecting mainly the lungs and digestive system. It is Ireland’s most common life limiting genetically inherited illness. Approximately 1 in 19 of the Irish population are carriers of the affected gene which means there is a 1 in 4 chance of having a child with Cystic Fibrosis with each pregnancy. (Cystic Fibrosis Association of Ireland 2009).
This service commenced in 1994 and through funding for a new paediatric unit a specific unit for paediatric patients was established in 2000. It was officially titled “The Butterfly Unit”. This service provides care and management for approximately 90 paediatric patients with Cystic Fibrosis. Patients attend our service from Clare, Limerick, and Tipperary & Kerry.
The care provided adopts the multidisciplinary team approach. Our Team consists of a Lead Paediatrician, Clinical Psychologist, Dietitian, Physiotherapist, Clinical Nurse Specialists and Social worker. The Butterfly Unit provides outpatient care utilising the MDT approach. Patients requiring inpatient treatment are facilitated on the Sunshine/Rainbow wards.
- In July 2011 The National Newborn screening programme for Cystic Fibrosis commenced in the Republic of Ireland.
- There are 6 centres involved and University Hospital Limerick was chosen to represent this region. A national Nursing guideline was introduced to cater for these patients.
- Babies diagnosed through NBS programme are being identified as having low sodium (salt) levels which require replacement therapy. Following the recent spell of hot weather this year we are proposing to introduce salt replacement therapy for all babies diagnosed with Cystic Fibrosis (under 6 months).
- With new therapies and advances in research CF is no longer a paediatric illness in the next 10 years the number of adult patients will be double the CF paediatric population. To ensure the highest standards of care are continued for this patient group we are currently developing a transition pathway for the adolescent patient group to ensure smooth transfer to adult care.
The new CF adult building is currently in progress and completion of this will enhance the existing service provided by the adult CF team