Support services
We offer a range of support for children with cystic fibrosis both in our hospitals and at home.
Cystic fibrosis home nursing service
All patients are able to be seen at home by a member of the cystic fibrosis clinical nurse specialist nursing team. Home visits are often carried out in conjunction with health visitors or community children’s nursing teams to ensure that all the needs of the child and family are met.
Home visits are prioritised and are negotiated with the parents on each occasion. All families with newly diagnosed children with cystic fibrosis are seen at home. Patients on home intravenous (IV) antibiotics are seen at home to ensure that they are responding well to treatment.
School and nursery visits are always completed when a child starts nursery or school, to ensure that the education team are aware of the specialised needs of the child with cystic fibrosis. Schools are given a written summary of the care required for their records.
When transfer to adult cystic fibrosis care is imminent, the children’s and adult cystic fibrosis nurse specialist team offer a joint visit to ensure that any worries or concerns about transition to adult care are discussed fully and allayed.
Our nursing teams can help you provide care for your child at home; limiting the amount of time they need to spend in hospital. This support includes working with families to ensure safe and effective management at home of intravenous antibiotics, enteral feeding and home oxygen.
Clinical psychology
The children’s cystic fibrosis team work very closely with a designated clinical psychologist as part of the Child and Adolescent Mental Health Services. The Clinical Psychologist works closely with families at all stages of the child’s life from diagnosis to adolescence.
