Nice to know: impact of NICE guidelines on ketogenic diet services nationwide

Abstract

Background In 2012, the National Institute for Health and Care Excellence (NICE) Clinical Guidelines for Epilepsies: Diagnosis and Management (CG137) included, for the first time, ketogenic diets (KDs) as a treatment option for drug‐resistant paediatric epilepsy. The recommendation was made to refer children and young people with epilepsy whose seizures have not responded to appropriate anti‐epileptic drugs to a tertiary paediatric epilepsy specialist for consideration of the use of KDs. We aimed to assess the impact of this change in guidance on the numbers of ketogenic centres and patients following KDs for epilepsy in the UK and Ireland.

Methods An online survey was circulated to ketogenic dietitians from the UK and Ireland. The results were compared with similar surveys published in 2000 and 2010.

Results The number of centres offering KDs for treatment of epilepsy has risen from 22 in 2000, to 28 in 2010, and to 39 in 2017 (77% overall increase). Seven of these centres accept adult referrals, in comparison to only two centres in 2010. Patient numbers have increased from 101 in 2000 to 754 in 2017. In total, 267 patients are waiting to commence KD at 31 centres.

Conclusions Over the last 7 years, the number of patients treated with a KD for epilepsy in the UK and Ireland has increased by 647%, with a 77% increase in the number of centres offering KDs. Despite this rapid growth, there is ongoing demand for patients to be considered for dietary therapy, highlighting the need for continued expansion of KD services nationally.