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Cystic Fibrosis (CF) is one of the UK’s most common life-threatening inherited diseases. Caused by a single defective gene that results in the internal organs, especially the lungs and digestive system, becoming clogged with thick sticky mucus. This results in chronic infections and inflammation in the lungs and difficulty digesting food. There are over 8,500 people in the UK with CF: each week five babies are born with CF and three young people die – 90% from lung damage. Current lack of access to specialist dietetic advice makes it hard for those with CF to maintain a normal body weight, which in turn makes it harder for them to fight chest infections and prevent the resultant lung damage. To address this need the CF Trust has launched an initiative to pump-prime a number of new specialist CF dietitian posts in CF centres across the UK.
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The care of hose with CF is complex, demanding and relentless. Apart from a huge amount of medication including oral, nebulised and intravenous antibiotics for the chest, there are many other manifestations of CF which need thorough management. These include diet. Some children and young adults with CF do very badly simply because they and their families have been neglected in this respect. Those with CF need to eat a high fat, high calorie diet in order to achieve anything like a near normal weight. Many are very slender in spite of eating double or even treble the calories of a normal child. This places a huge burden on families because of lack of appropriate dietetic knowledge, the high cost of these foods and the psychological issues that following such a specialist diet can give rise to, particularly amongst children and teenagers. The CF Trust has become increasingly concerned about the tendency of the NHS to use general, rather than specialist CF dietitians. Most general dietitians are not trained to look after the needs of those with CF and are more familiar with obesity and resultant conditions such as diabetes. Specialist CF dietitians have been established over many years, but not all patients get access to them and there is an accelerating problem in getting appropriate specialist dietetic advice. Through the CF Trust’s peer review of CF clinics and centres (which it commenced in 2006) and our survey of CF patients and carers (undertaken in 2008) we identified a gap in the service for CF patients. At present, for example, there is a specialist CF dietitian at nearly every CF centre but not most clinics. There is also little succession planning in place to ensure experience and skills are passed on. In response to this need the Trust launched an initiative to pump prime, over a period of three years, a number of specialist CF dietitian posts within NHS centres. The appointment of these posts is conditional on the NHS agreeing to take over the funding after the three year period. We have already secured funding for two dietitians; one at the Royal Victoria Infirmary in Newcastle and one at the University Hospital of Wales in Cardiff. The cost of these posts (depending on banding) is £100,000 over three years, or £33,000 a year.