Swansea Paediatric Cystic Fibrosis Clinic

Clinic Population

We look after cystic fibrosis children from the Swansea, Neath, Port Talbot and Llanelli areas.  We look after around 40 children between ages of 0 and 19 years.

Inpatient Facilities 

If our CF patients need admission they are admitted to one of the paediatric wards at Singleton Hospital.  We have a strict infection control policy to prevent mixing of our CF patients while they are inpatients.

CF Clinics

CF Clinic is held every Wednesday morning in the paediatric outpatient department at Singleton Hospital.  We don’t segregate patients on basis of pseudomonas aeruginosa colonisation but we would segregate patients if they were colonised with multi-resistant organisms such as MRSA, Burkholderia cepacia, multi resistant pseudomonas aeruginosa.  Other infection control measures include seeing babies / young children at the beginning of clinic, spacing out appointment times.

Staff

Paediatric Consultant – Dr Rachel Evans

CF Nurse Specialist – Dorinda Pooley     

Physiotherapist – Michelle Barry, Julie Clarke

Dietician – Ann Williams

Psychologist – Christina Liossi (University of Swansea)

Annual Reviews

Our annual reviews are done by Dr Iolo Doull Consultant Respiratory Paediatrician from UHW, Cardiff on a Wednesday morning.

Newborn Screening

Babies in Wales are screened for cystic fibrosis as part of the Newborn Screening programme.
All babies have their immunoreactive Trypsin (IRT) measured and those with a raised IRT go on to have the 31 commonest Welsh CF mutations looked for on the same Guthrie card blood spot.  Cystic Fibrosis clinics are then informed of babies in their area with one or two identified CF mutations.  We are usually notified when the baby is around 3 or 4 weeks of age.  Our approach in Swansea is to arrange a sweat test (the gold diagnostic test for CF) for a Wednesday morning and for our CF Nurse Specialist to visit the family along with their Health Visitor the day before the sweat test.  The baby and the parents are then seen later on the Wednesday by the Consultant for the result of the sweat test.  If sweat test confirms diagnosis of CF, the parents meet the rest of the team and treatment is started.  If the baby has no chest symptoms we manage the newly diagnosed CF on an outpatient basis.