Cystic Fibrosis

Cystic Fibrosis Team

We are a Paediatric Specialist Cystic Fibrosis Centre and care for children and their families in Norfolk and Suffolk. We are also part of the Norfolk, Suffolk and Cambridgeshire Cystic Fibrosis regional network. We have clinics at the Norfolk and Norwich University Hospital, the James Paget Hospital in Gorleston and the Queen Elizabeth Hospital in King’s Lynn.

We have a weekly paediatric Cystic Fibrosis clinic every Monday at the Jenny Lind Children’s Hospital Outpatients Department where members of the multidisciplinary team are available to meet with the child and their family during their clinic appointment to offer advice and support.

The Cystic Fibrosis team consist of consultants, clinical fellows, junior doctors, nurses, physiotherapists, dieticians, psychologist, pharmacist, social worker and a family support worker.

Clinical Team

The Cystic Fibrosis team members are:

Paediatric Respiratory Consultants: Dr Kavanagh, Dr Pillai

CF Specialist Clinical Fellow: Dr Yanny Delgado

Respiratory Nurse Specialists: Catharine Moates, Helen Shorten, Alison Betteridge

Respiratory Physiotherapists: Emma Larner, Holly Bacon

CF Co-ordinator: Karen Manning

Specialist Dieticians: Sara Pullan, Emma Gray

Specialist Pharmacist: Robin Saadvandi

Family Support Worker/Volunteer: Christine Berwick

We input information about our patients (with consent) onto the Cystic Fibrosis Trust PORTCF database. This provides the Cystic Fibrosis Trust with generalised data for the whole country and is presented in an annual report for the country and each individual hospital. They can also use the data to inform government policy and development of services for the Cystic Fibrosis community.

If our patients have other complications related to Cystic Fibrosis then we arrange for them to see the relevant specialist team, for example the Paediatric Gastroenterology team at the Norfolk and Norwich University Hospital

 

Cystic Fibrosis Annual Review Clinic

Children attend the annual review clinic once a year. This clinic involves a detailed review of the past year of the child’s life. It looks at all aspects of the child’s management within the past year and includes management of their chest, fitness, nutrition, general wellbeing, social, family and schooling. This can include blood tests, radiological investigations, dietary investigations and a fitness test. Their progress over the previous year is assessed and areas are identified where improvements can be made. When children are over 12 years old they come to an investigations clinic on the children’s day ward.

Cystic Fibrosis Transition Clinic

We have a teenage transition clinic once a month for the young people with cystic fibrosis aged between 14 and 16yrs. At our transition clinic the teenagers get to meet members of the adult CF team on a regular basis as well as being seen by the paediatric team. This allows the young people and their families to become familiar with the adult team prior to their transfer to adult care. We also complete the Ready, Steady, Go transition programme with each individual patient to ensurethat our young adults feel confident and ready to move into adult services.

 

Jenny Lind Mouse