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.
The inpatient ward and cystic fibrosis outpatient department are next to each other and offer state-of-the-art facilities. These have been purpose-built within the 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.
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.
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. Patients and families are supported by a named team of specialist nurses.
We have a specialist cystic fibrosis team including dedicated medical and nursing staff, physiotherapist, dieticians, psychologist, 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.
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 (www.cftrust.org.uk).
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 (https://www.ecfs.eu/ctn), and the Cystic Fibrosis Trust Clinical Trial Accelerator Platform (https://www.cysticfibrosis.org.uk/the-work-we-do/clinical-trials-accelerator-platform).
We run regional Network Shared-Care Clinics at Bradford, Calderdale, Huddersfield, York, and Scarborough.