The Adult Cystic Fibrosis Centre was established in 1994 and now looks after more than 330 adults with CF from the Eastern Region and beyond.
The service is part of the Cambridge Centre for Lung Infection (CCLI), and is supported by a multidisciplinary team including: 6 CF specialist consultants, 3 CF specialist nurses, a dedicated ward nursing team, research nurses, specialist physiotherapists, dieticians, pharmacists, social workers, psychologist, psychiatrist, secretaries and management team.
Patients are seen in specialist CF clinics according to their sputum microbiology: no regular infection, non-epidemic Pseudomonas aeruginosa, epidemic Pseudomonas aeruginosa, Burkholderia cepacia complex, Mycobacterium abscessus and MRSA clinics occur weekly. The Centre also provides a 24/7 emergency service for people with CF who are acutely unwell.
The Royal Papworth Adult CF service also provides specialist CF psychological medicine clinics, CF diabetes clinics with the CUH diabetes team, and specialist CF liver disease clinics with CUH hepatologists.
Annual CF transition clinics are performed jointly with the paediatric teams to meet children and families prior to their care moving to the adult service. We currently run transition clinics at Great Ormond Street Hospital in London, CUH in Cambridge, Ipswich Hospital, Luton & Dunstable Hospital, Kettering Hospital, Peterborough Hospital and Chelmsford Hospital. A link to a website containing useful information about transitioning from paediatric care to adult care at Royal Papworth NHS Foundation Trust is found below.
The inpatient facilities at Royal Papworth Hospital include 12 ensuite rooms on the CF ward on Floor 4 with a further six inpatient rooms on an adjacent ward, for patients with CF with more antibiotic resistant organisms. Each room contains air conditioning, high-speed WIFI, a flat screen TV and games console.
The outpatient facilities include 10 rooms in a dedicated CCLI area in the outpatient department, four of which are en-suite.
The hospital has some state-of-the-art features to make it as safe as possible for people with CF from a cross-infection prevention perspective:
In February 2019, we began a new home monitoring trial for our cystic fibrosis patients. This is a first-of-its-kind project being led by Royal Papworth Hospital and funded by the US CF Foundation. Project Breathe has a wide range of benefits for patients, allowing them to monitor their health at home far more regularly than relying on hospital visits. This gives patients more control over the health and a better understanding of when they are showing early signs of deterioration. Read more about Project Breathe in the 'related information' below.
Project Breathe - Royal Papworth Hospital's cystic fibrosis team is leading the world with a new, advanced home-monitoring trial for our CF patients.
Orkambi, Symkevi and Kalydeco (November 2019)
Cystic Fibrosis Trust (Link to external site)