Patients with cystic fibrosis are living longer than ever – with advances in care offered at Southampton’s university hospitals reflecting improved prognosis.
Cystic fibrosis is a genetic disorder that mainly affects the lungs and digestive system, but can involve other organs, resulting in ill health from birth or a young age.
Previously, treatment for the condition focused mainly on paediatric care due to shortened life expectancy, but over the last 20 years, better treatments and nutritional help for young people have led to a dramatic increase in survival.
There has been a move away from sufferers dying in their teenage years to now living into their mid-30s and beyond – with optimal care and treatment, it is estimated that 80% of children born today with cystic fibrosis should live into their mid-40s.
This has resulted in expansion of the adult cystic fibrosis unit at Southampton General Hospital, which is the regional specialist centre for the disease and treats patients from as far afield as Brighton, Yeovil and Jersey.
“We are seeing an ever increasing number of patients with cystic fibrosis here in Southampton, with patients living longer than would have been expected in the past, so our services needed to grow to accommodate this,” said Dr Julia Nightingale, clinical lead for cystic fibrosis.
A specialist team comprising of consultants, specialist nurses, a psychologist, physiotherapists, a social worker, dietitians, a pharmacist and administrative staff is now able to carry out extra weekly clinics and offer emergency care to patients following the opening of four new treatment rooms.
In addition, upgrading of the department has also seen the creation of a ‘quiet’ room for staff to talk to patients and their families in comfort, while two larger meeting rooms have enabled the growing team to be accommodated whilst ensuring they operate at the heart of the unit.
Dr Nightingale added: “Our department is now centralised in one area of the hospital, with all of our clinics taking place in the same dedicated facilities, giving patients a purpose-built environment and our team a real sense of identity.”
Posted on Tuesday 18 May 2010