Cystic Fibrosis

How we help

The Cystic Fibrosis centre at The Alex is a comprehensive service for children and young people with cystic fibrosis. The team also supports the cystic fibrosis teams at Worthing Hospital and St Richard’s Hospital in Chichester.

All aspects of Cystic Fibrosis (CF) care, both inpatient and outpatient, are cared for from diagnosis right through to when patients transition to adult care services. The Cystic Fibrosis Team is a multidisciplinary team of CF specialists including consultants, nurse specialists, physiotherapists, pharmacists, dietitians and psychologists.

Outpatient clinics and reviews

CF clinics are held weekly on Friday afternoons and all children with CF are seen at least every three months.

Annual reviews are also done for all children and are comprehensive. They involve a home visit by the CF nurse specialist followed by a morning when all tests are carried out. All the results are analysed by the team and then discussed at a designated annual review clinic with the patient and their family. The annual review clinics are held on Friday afternoons but if need an appointment can also be arranged on other days.

The CF nurse specialists are also available for phone consultations and triage daily.

The team also arrange referrals or appointments with the endocrine, gastroenterology and liver specialist teams and to the surgical teams all based at The Alex. Any x-rays, CTs and ultrasounds that are needed are all carried out at The Alex. Bone scans are carried out at the Sussex Osteoporosis Clinic based in Brighton.

Home care from our specialists

We understand that home care and links to home and the child’s life are important. Home visits are carried out by the CF nurse specialists for the annual review and also to provide regular support and advice and where appropriate to carry out clinical procedures in the home. Visits can also take place in schools and nurseries.

The CF specialist physiotherapist can do home reviews and the CF psychologist can also see patients at school if appropriate to do so.

When our young patients transition to adult services, the CF nurse specialist can attend the first adult appointment with the young person to help them with this process.

Inpatients

Some patients may require an inpatient stay for more intensive treatment such as intravenous antibiotics as well as for planned procedures such as bronchoscopy, portacath or gastrostomy insertion.

We make the stay as comfortable as possible for patients and provide individual ensuite rooms on our medical ward on Level 9. These rooms also have a bed for a carer and a fridge. All infection control policies are adhered to at all times.