Use of the ketogenic diet and dietary practices in the UK

Background: In 2000, a survey showed that use of the ketogenic diet as a treatment for intractable epilepsy in the UK was low. Subsequently, the number of medical publications supporting its efficacy has increased and demand from parents for this treatment has also increased. This survey was undertaken to determine whether there had been an increase in the use of the ketogenic diet and the necessary resources to provide it. Methods: A survey of paediatric dietitians in the UK was undertaken. Data were collected on their experience of implementing a ketogenic diet, the type of diet used, patient caseloads, other members of the care team, the process for initiation of the diet and funding. Results: Twenty‐eight hospitals offered the ketogenic diet treatment with a total of 152 patients. The caseload per dietitian ranged from 1–36 patients. The classical diet was prescribed for 74% cases. The majority of patients began the diet as outpatients. Six dietitians were specifically funded to provide the treatment. Fifty more dietitians had experience of implementing the diet but currently had no patients. The reasons given for this were no referrals, no funding or not working with patients with epilepsy. Conclusions: The number of patients on the ketogenic diet had increased since 2000. However, numbers remained low and the main reasons given were the lack of referrals and a lack of funding. Recommendations are made to improve the dietetic and funding resources available so that an efficacious treatment for intractable epilepsy of childhood can be made more widely available.