We are the children’s Cystic Fibrosis (CF) Team at Leicester Royal Infirmary, dedicated to delivering high-quality, evidence-based, and family-centred care. Our passionate multidisciplinary team works together to support children and young people with CF in achieving the best possible health outcomes and quality of life.
We care for patients across Leicestershire and North Northamptonshire, and also welcome referrals from nearby counties for families who wish to access our service.
We are a multidisciplinary team consisting of specialist doctors, specialist nurses, specialist physiotherapists, specialist dietician, specialist pharmacist, respiratory physiologists and psychology. We are based at the Leicester Royal Infirmary where we have clinics, in-patient admissions and outreach into patient’s homes and schools.
Infection control
Preventing cross-infection is a top priority. To protect your child and others, we take strict infection control measures:
- Each child stays in a dedicated clinic room during their visit.
- Team members come to the child, rather than moving patients around.
- Children with specific infections are scheduled at separate times.
- Staff wear aprons and gloves for every consultation, both in clinic and during hospital admissions.
To help us reduce the risk of cross-infection, please:
- Bring your own toys, books, or electronic devices for your child. We also provide items that are cleaned or replaced between patients.
- Use hand sanitiser when entering and leaving the clinic.
- Arrive on time, but not too early. If your room is not ready, you may be asked to wait elsewhere.
- Go directly to your assigned clinic room after checking in.
- Remain in the room unless advised otherwise by staff.
- Leave promptly once your visit is complete.
Inpatient care for children with Cystic Fibrosis
To maintain strict infection control, children with cystic fibrosis are admitted to Wards 10, 14, and 19 at the Leicester Royal Infirmary. These wards are located on levels 4 and 6 of the Balmoral building.
Inpatient stays
Most admissions for CF treatment last at least two weeks, though this can vary depending on the treatment plan. During their stay:
- Each child is cared for in a private cubicle (side room) to prevent cross-infection.
- Most care and treatments are delivered in the cubicle, but children may also access the physiotherapy gyms under supervision.
- Hospital School services are available during term time to support ongoing education for school-aged children.
- Our dedicated play specialists help ensure children’s emotional and developmental needs are supported during their stay.
Home intravenous (IV) therapy
For some children, we offer a home IV service, allowing part of the treatment to continue at home after a shorter hospital stay. This service is arranged on a case-by-case basis and requires:
- Parent/carer training to safely administer IV antibiotics at home.
- Ongoing support from our team, including physiotherapy visits at home or school to continue respiratory care.
This approach allows children to continue treatment in a more familiar and comfortable environment while maintaining close contact with our specialist team.
Clinics
Outpatient appointments take place in the Children’s Outpatient Department (Level 1) and the Child Development Centre (Level 0) of the Windsor building at the Leicester Royal Infirmary.
Each child is assigned to a specific clinic, and you will be informed of the location and schedule in advance.
- Babies are seen monthly, while older children usually attend every two months.
- During each clinic visit, your child will be reviewed by multiple members of the cystic fibrosis team, ensuring a comprehensive assessment.
- Routine throat or cough swabs are taken at every appointment to monitor for infections.
Education and school support
The cystic fibrosis team works closely with parents, carers, and school staff to ensure that children and young people with CF have full and equal access to education. With agreement from families and schools, CF nurses or physiotherapists may visit schools to offer tailored support and guidance.
When school-aged children are admitted to hospital, the Hospital School provides continuity of education. This helps prevent pupils from falling behind with their studies, while also offering emotional support and opportunities for creativity and fun.
To reduce the risk of cross-infection, CF patients must remain separate and may need to complete schoolwork in their side rooms. However, dedicated staff are always available to offer assistance and encouragement.
Strong liaison with each child’s mainstream school is a priority. The hospital school team works hard to ensure that all CF patients enjoy a positive and productive educational experience during their hospital stay.