Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether she is taking steps to help ensure access to ketogenic diet treatment in (a) Hull West and Hessle constituency and (b) nationally.

The majority of health services for people with epilepsy are commissioned locally by integrated care boards (ICBs). ICBs are best placed to make decisions regarding the provision of health services to their local population, including for the treatment of epilepsy, subject to local prioritisation and funding.

At the national level, there are a number of initiatives supporting service improvement for those with epilepsy, including NHS England’s Neuroscience Service Transformation Programme and the RightCare Epilepsy Toolkit.

The National Institute for Care Excellence (NICE) guideline on epilepsies in children, young people, and adults [NG217], published in April 2022, covers diagnosing and managing epilepsy in primary and secondary care, and referral to tertiary services. Recommendation 8.1 states that a ketogenic diet should be considered under the guidance of a tertiary epilepsy specialist for certain childhood-onset epilepsy syndromes, and for drug resistant epilepsy when other treatments have failed or are not appropriate. More information on this is available at the following link:

https://www.nice.org.uk/guidance/ng217/chapter/8-Non-pharmacological-treatments#ketogenic-diet

We expect National Health Service commissioners to take NICE guidelines into full account in designing services that meet the needs of their local populations. It is, however, important to note that NICE guidelines are not mandatory and do not override a clinician’s responsibility to make decisions appropriate to individual patients, in consultation with them and their families.