CF care crisis
November 1
Care for young patients with the genetic lung disease cystic fibrosis in Britain is seriously under-resourced, a report claims today. Britain has 38 specialist centres for cystic fibrosis – but none received the funds to provide recommended levels of care, according to the Cystic Fibrosis Trust. One centre said they could only afford to employ a twelth of the staff they needed. And more than 30 per cent of patients reported difficulties in obtaining effective drugs and therapies, in the CFT survey. More than 7,500 people in Britain have CF with an average life expectancy of 31. Trust chief executive Rosie Barnes said: “The research clearly demonstrates what patients and medical staff have been telling us for some time: that the welcome increase in NHS funding over recent years is simply not getting to the front line of CF care.”
Health minister Stephen Ladyman said the government aimed to ensure all patients with long term conditions were able to have a personalised care plan backed by community matrons. He said the government was pumping cash into research into gene therapy for CF – and was also implementing a screening programme for new-born children. He said: “We want to bring existing provision up to the highest standard. We expect to see full roll-out of screening within three years. But we can’t do everything overnight.”