Clinical Guidelines: Care of Children with Cystic Fibrosis . Royal Brompton Hospital. 7 ª edição. 2017.
The purpose of this document is to set out guidelines to ensure standardised care for children with cystic fibrosis looked after at the Royal Brompton & Harefield NHS Foundation Trust and District General Hospitals on a network care basis. They should be used as a guide only. The Royal Brompton Hospital is a Specialist CF Centre as defined by the Specialist Commissioners, NHS England.
Our philosophy of care for patients with cystic fibrosis is based on current guidelines laid down by the Royal College of Physicians, Royal College of Paediatrics & Child Health (formerly British Paediatric Association), CF Trust,British Thoracic Society, and NHSE Service Specifications. These have identified significant advantages in terms of survival and morbidity for patients receiving care from specialist centres. Specialist centres offer access to comprehensive care froma multidisciplinary team consisting of consultants with a special interest in CF, traineedoctors, nurse specialists, dietitians, physiotherapists, clinical psychologists, pharmacistsand social workers. The team is also responsible for producing and distributing educational material and carrying out research to improve knowledge about this disease. Special procedures and investigations are provided that may not be available at District General Hospital level (such as formal lung functionand bronchoscopy). We are happy to continue witha shared care policy, as long as the NHSE National Service Specification and our signed Service Level Agreement areadhered to.We also runa number of out-reach clinics whereby our MDTsee CF patients in their local hospitals.
Death in childhood from CF is now rare, and children born today are likely to have a mean life expectancy of over 40-50 years. There are approximately 10,500 people with CF in the UK and just under half are children. On average, large District General Hospitals will have a local CF population of between 10 and 20 patients (it may be less in the London region which has a higher density of hospitals);and General Practitioners between 0 and 2 patients. The PaediatricCF Serviceat the Royal Brompton Hospital has around 340 children under its care whilst there are about 650 patients in the Adult Service. The paediatric team normally sees children and adolescents until they finish their GCSEs and they will have made the transition to an Adult CF Service at the Royal Brompton Hospital or another Specialist Adult CFCentre of their choiceby their 17thbirthday.
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