The CF Nurse Specialists have such an important role in patients lives and are the glue that holds the CF service together. Without them, it would fall apart. Apart from their identified CF responsibility in outpatient clinics, attending to inpatients, training the ward nurses in CF, and supporting families coping with IVs at home, they fill innumerable gaps. They are the familiar, constant and reassuring presence for families or adults with CF.
Some CF Nurse Specialists have been asked to spend some of their time on general ward duties rather than caring for those with CF. Whilst we appreciate the ongoing need for efficiency
and cost savings, this should never be at the expense of the health of people with Cystic Fibrosis. CF nurses and teams are often already overstretched and reducing nursing time further is a grave concern, particularly as we understand that this has led to a reduction in the number of home visits that some CF nurses are now able to undertake.
We are keen to hear from parents/patients as to whether these issues have affected the care you/your child receives. Please do contact us with your experiences by emailing email@example.com