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Cystic Fibrosis

What we do

We are proud at the Alex to have our own Cystic Fibrosis (CF) Centre offering a comprehensive service for children and young people with CF. The CF team at the Alex also supports CF teams in Worthing and Chichester.

All aspects of CF care, both inpatient and outpatient, are undertaken from diagnosis right through to when patients transition to adult care services. The CF team is a multidisciplinary team of CF specialists including consultants, nurse specialists, physiotherapists, pharmacists, dieticians and psychologists.

Preparing for your appointment

Take a look at our video which will show you what to expect when you come to the CF Centre at the Alex.

What to expect while under our care

Outpatient clinics and reviews

  • CF Clinics – these are held weekly on Friday afternoons and all children with CF are seen at least every three months.
  • Annual reviews – these are comprehensive and conducted for all children. 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 – these are held on Monday afternoons but if required an ad hoc appointment can also be arranged on other days.
  • The CF Nurse Specialists are available for phone consultations and triage daily, the contact details can be seen at the bottom of this page.
  • All patients are seen in individual rooms.

The CF team can also arrange referrals or appointments with the endocrine, gastroenterology and liver specialist teams and to the surgical teams all based at the Alex. Any required x-rays, CTs and ultrasounds are all carried out at the Alex too. 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.

Location

Level 4c. the Royal Alexandra Children’s Hospital, Brighton

Contact

Paediatric Consultants: Professor Paul Seddon, Dr Akshat Kapur, Dr Krishne Chetty, Dr Tom Ruffles

  • Cystic Fibrosis Nurse Specialists: Cathy Warde and Jason Lenton 01273 696955 ext. 62519/ 62518.
  • CF Specialist Dietician: Chris Smith 01273 696955 ext. 62389
  • CF Specialist Physiotherapist: Lucy Craig 01273 696955 ext. 62500
  • CF Specialist Pharmacist: Christian Chadwick 01273 696955 ext. 62492
  • CF Psychologist: Dr Sally Harris 01273 696955

CF Administrator: Helen Taylor


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