All babies who are suspected of having cystic fibrosis (CF) through the newborn screening (NBS) programme are referred directly from the regional NBS laboratory.
Although CF is now mostly diagnosed through this screening process, there are some babies and older children (and even adults) who are diagnosed following unexplained illness.
If a child moves into the area they can be referred by their previous CF centre or by their new general practitioner.
When CF is suspected, the Royal Victoria Infirmary (RVI) screening laboratory refers the child to Teesside Cystic Fibrosis Centre.
Pathways are in place for a referral from the newborn screening laboratory to the relevant specialist CF centre (within 24 hours) which are robust so that cases are not missed and all positive results processed appropriately.
Specialist CF centres and their networks have a care pathway in place for contacting the parents in person and making the diagnosis in a timely fashion.
Consideration must be given to reducing the waiting time and stress for the parents.
Teesside CF centre will contact the family health visitor who will make an appointment with the family (normally within 24 hours) and meet the family at home with the CF nurse specialist to give initial diagnosis.
The family will then be seen by CF consultant either the same day or following day along with the CF nurse specialist.