Cystic fibrosis
Cystic fibrosis is a life threatening genetically inherited disease which affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Cystic fibrosis affects over 8,000 people in the UK.
University Hospital is part of the West Midlands Regional Genetic Service, which was established in 2002, and specializes in identifying educational needs, developing educational resources and training opportunities and delivering high quality genetics education. University Hospital's service covers a wide area, ranging from North Staffordshire to Shropshire, Burton and Stafford.
The blood test done routinely on all babies in their first week screens for cystic fibrosis. The test makes it possible to identify whether or not a baby has cystic fibrosis, meaning that the condition can now be picked up on earlier than ever before.
Our team
Our multi-disciplinary team approach allows us to treat patients more thoroughly and effectively. A patient will see a consultant, registrar psychologist, dietician, physiotherapist and a clinical nurse specialist as part of their care pathway. The Trust also have a cystic fibrosis co-coordinator, who provides a point of contact for patients as well as general information.
We provide a cystic fibrosis service to both children and adults, with a clinical nurse specialist for each group to make the transition from a child with cystic fibrosis to an adult with cystic fibrosis easier.
Treatment
Our team provide care for different elements of the disease as patients progress throughout their journey, using treatments typical of the condition such as enzyme treatment, physiotherapy, and antibiotics, but as a Trust we also provide:
Psychological support. Our staff know that cystic fibrosis is a difficult disease to live with for both the patient and their carers. It can bring an enormous amount of pressure and worry, and at University Hospital we strive to alleviate some of the stress. We offer support to both the patient and their parents/carers, and by making ourselves as available as possible to talk to.
Advice for Schools. Our staff will go out to schools and colleges where a patient may be attending to educate them on the nature of cystic fibrosis, its effects and its consequences. We will make sure the organisations have all the information they need to ensure the patient is cared for and monitored properly.
Home Visits. We understand it is not always possible or convenient to attend here if the patient requires treatment, and therefore we are able to make home visits should the patient require it.
Contact Information
Email: cf.team@uhns.nhs.uk
Tel: 01782 675015 Our Clinical Nurse Specialist can be contacted here.
Useful Links
Cystic Fibrosis Trust