10/11/2004

 To whom it may concern,

 In June 2002, I joined the cf team in Temple Street as their dietitian. The cystic fibrosis patients always had access to a dietitian but never before were they allocated their own dietitian purely for their own specialised needs. My post was created and paid for from fundraising for the first year and following on from that the hospital agreed to keep up my post and make it permanent.

Research has shown time and time again that nutrition directly affects the health of the lungs, which in turn affects both life expectancy and quality of life for children with cystic fibrosis. The more well nourished they are, the healthier they are, the better their quality of life and the less time they will have to spend in hospital. Food for them really is the best medicine.

And so I started in this job with the intention of doing my utmost to fatten up these wonderful but slightly thinner than average children. It may sound like an easy job - a couple of trips to McDonalds and a few dozen fun size bars and in no time you will have a child with more puppy fat than a litter of Labradors. But unfortunately parents of children with cystic fibrosis will tell you the reality is quite different.

 Children with cystic fibrosis have problems releasing enzymes from their pancreas to digest their food. As a result, they must take enzymes in the form of tablets every time they eat. However, even with these enzymes, not all of the goodness of the food is absorbed into their system and they lose out. In addition to this persistent chest infections and antibiotic therapy, as one can imagine, affects their appetite. Some of our children would have been tube fed as an infant and as a result never properly learned to eat Throw in a sprinkle of classic childhood fussiness and you have a mix guaranteed to produce a skinny, undernourished child with a high tendency to pick up infection.

My job as part of the cf team is to monitor the overall growth and nutritional status of our patients. The parents often keep food diaries so as I can be kept up to date on how many calories and grams of fat the children are managing to eat on a daily basis. We use various laboratory tests to determine how well the enzymes are digesting the foods our children are working so hard to eat. I try to make sure the children are taking the right number of enzymes with the right foods. I see our patients at the very least once every three months at clinics. I try to make sure our children are getting enough protein, vitamins and minerals and try to give them ideas on how to make sure their foods are as high in calories and fat as possible. I also organise their tube feeds if this is part of their treatment.

 I love my job on the cf team in Temple Street and nothing gives me a bigger thrill than to see a child come into clinic with their weight improved, lots of energy and their parents delighted. It takes a lot of work on everyone’s behalf but we’ve definitely had a few great success stories since I started 17months ago. I recently attended the North American Cystic Fibrosis Conference in Missouri where all of the most recent research in all areas of cystic fibrosis treatment was presented. I met with many dietitians from all over the United States and Canada who work in cystic fibrosis. There is always new research coming out in the area of nutritional therapy for children with cystic fibrosis so it’s an interesting field to work in.

 My aim this year in the hospital is to carry out an audit on our patients to see if we can see a statistical improvement in the overall nutritional status of our patients since I took up the post of cf dietitian. I am also working within the hospital to improve the menus for the children when they are inpatients. I was also considering looking for a chef to do a session with our parents on ways to make high calorie tasty meals and snacks…anyone got Jamie Oliver’s phone number?

valerie kelly

paediatric dietitian

Temple street hospital