Cystic Fibrosis

The Leeds Regional Paediatric Cystic Fibrosis Centre at Leeds Children’s Hospital cares for 175 children with cystic fibrosis on a full-care basis, and a further 60 children on a shared care basis with their district general hospitals, making our service one of the largest paediatric cystic fibrosis centres in the UK.

Our aim is to provide accessible, excellent specialist care, enabling children and young people with cystic fibrosis to maintain the best possible health, and participate as fully as possible in normal childhood activities and aspirations, including school, college, and sports.

What we do

Leeds Regional Paediatric Cystic Fibrosis Centre

We provide accessible, excellent specialist care, enabling children and young people with cystic fibrosis to maintain the best possible health and take part in normal childhood activities and aspirations as fully as they can. This includes school, college, clubs and sporting activities.

We see children and young people with cystic fibrosis from diagnosis right through until it is time for them to transition to adult CF care at around 17 years of age.

We provide a comprehensive service based on high standards of care guided by national and local guidelines.

Facilities

The inpatient ward and cystic fibrosis outpatient department offer state-of-the-art facilities. These have been purpose-built within Leeds Children’s Hospital with the specific needs of children and young people with cystic fibrosis in mind. People with cystic fibrosis are particularly vulnerable to cross-infection of chest infections particularly from other people with cystic fibrosis, so the unit and ward is designed and run to minimise the risk of this happening. In-patients receive their care in their own side-room with en-suite facilities but where possible many patients get their care, including intravenous antibiotics, at home.

We organise and support routine cystic fibrosis medication, alongside chest physiotherapy, exercise and good nutrition which makes an enormous difference to the health and life expectancy of children and young people with cystic fibrosis.

We support and empower families to understand the importance of these vital treatments and how they should provide the best care when outside of the hospital. Cystic Fibrosis is a serious disease and is particularly damaging and miserable if it is under-treated. Children and adults with the best health are usually those who have a good routine with all their regular treatments, physio, and exercise. Our aim is the best possible health and happiness for every child and young person.

We also provide support and education both within the home and school setting.

Outcomes

We are proud of the outcomes for our patients which are above UK average in all areas but particularly:

good lung function
good nutrition
low rates of Pseudomonas chest infection

These outcome measures are demonstrated in the national UK registry run by the Cystic Fibrosis Trust, and are available in the public domain via the CF Trust website.

Partnership working

We are very involved with service development and research to help improve outcomes for people with cystic fibrosis and are an accredited site within the European Cystic Fibrosis Society Clinical Trial Network, and the Cystic Fibrosis Trust Clinical Trial Accelerator Platform

We run regional Network Shared-Care Clinics at Bradford, Calderdale, Huddersfield, York, and Scarborough hospitals.

Meet the Team

We’re a large and friendly multidisciplinary team. Our specialist Cystic Fibrosis team includes dedicated medical and nursing staff, physiotherapists, dieticians, psychologists, specialist nurses and a social worker. This team cares for children from diagnosis through screening and, when the time comes, through to transition to the regional adult Cystic Fibrosis service based at St James’s Hospital. Patients and families are supported by a named team of specialist nurses.

Consultant and Lead Clinician: Dr Tim Lee
Consultant: Dr Emma Guy
Consultant: Dr Christopher Edwards
Consultant: Dr Laura Walker

Physician Associate: Nao Doylend

CF Administrator: Emily Metcalfe

Specialist CF Dieticians:
Jacqui Lowden
Laurie Cave

Specialist CF Physiotherapists:
Elaine Edwards
Christine Blackburn

Cystic Fibrosis Nurse Specialists:
Lianne Lund
Elizabeth Hill
Rosie Godfrey
Carol Sowerby

Specialist CF Psychologist: Dr Sheriffa Amponsem

Cystic Fibrosis Young Person’s Key Worker: Faith Ochelle

Specialist CF Pharmacist: Hannah Hunter

Specialist CF Social Worker: Louisa Beardsworth

CF Outpatient Sister: Carol Sowerby

CF Clinic Nurse: Katy Waller

CF Clinic Assistant: Lesley Kell

Attending Clinic

Transport

Car parking for the Cystic Fibrosis and Respiratory Unit is situated just to the right hand side as you enter the Clarendon Wing car park.

You for access please pull up and ask at the Children’s CF and Respiratory Unit Reception for a code to raise the barrier to the car park.

Who you will see at clinic

During your visit to the CF Unit you might meet:

Receptionists
CF Clinic Support Worker
CF Clinic Nurse
CF Specialist Dietitian
CF Specialist Physiotherapist
CF Doctor – this may be one of the CF Consultants, CF hospital practitioners or a Registrar who is attached to the Respiratory Team.
CF Specialist Psychologist and CF Specialist Social Worker

Leeds General Infirmary is a teaching hospital so you may meet medical students and student nurses during your visit to the CF clinic. The CF Team work closely with the Children’s Research team and occasionally you and your child may be asked if you would like to take part in a research study. This is completely voluntary and will not affect the patient’s care if you would prefer not to.

Clinic visit

When attending clinic please bring to every appointment your child’s current inhalers, spacers, iNeb, or physio devices they may have, so we can check they are working well.

Each child or young person with CF, accompanied by their parent or carer, will be seen in individual rooms to protect against cross-infection.

At each clinic appointment children will have their height and weight measured. They will have their oxygen saturations recorded on an oxygen saturation monitor.

Children over 5 years of age will have their lung function measured on a spirometer machine. A cough swab or sputum sample will be obtained to check for the presence of any respiratory infection.

If required your child may need to have further tests such as a chest X-ray or blood tests, these will be fully explained to you and your child.

Changing your appointment

If you are unable to attend your appointment please contact the team on 0113 392 7125 and you will be able to rebook another appointment. By cancelling your appointment we will be able to offer the appointment to another patient and reduce waiting times.