Reviews, ketogenic diet and referrals for breakthrough seizures

Published: May 06 2022
Last updated: May 12 2023

Annual reviews, ketogenic diet and urgent referral for breakthrough seizures among changes to epilepsy guidelines

People with well controlled epilepsy may not be offered an annual review, according to the updated guidelines for epilepsy healthcare professionals from The National Institute for Health and Care Excellence (NICE).

NICE now recommends that regular reviews (at least once a year) a should be offered to certain groups of people with epilepsy, according to the new guidelines published on 27 April. These include, children and young people, those with hard-to-treat epilepsy and those at a high risk of sudden unexpected death in epilepsy (SUDEP).

People with a learning disability or other health conditions, such as complex mental health problems, will also be offered annual reviews. Those taking medicines with long-term side effects, such as bone health problems, and women of childbearing potential taking medicines which carry a risk in pregnancy, will also be offered reviews.

If you are outside these groups, NICE says you should still get a review if you have concerns with your epilepsy, but you would need to ask for one.

The guidelines say people who continue to have seizures should be offered appointments with an epilepsy specialist nurse (ESN) at least twice a year and after any A&E visits.

Another change is that the ketogenic diet can be considered as a treatment option in adults as well as children, according to the updated guidelines. This is in people with certain epilepsy syndromes or in people with hard-to-treat epilepsy where other treatments haven’t worked or are not suitable. In the previous guideline, the ketogenic diet was only recommended for children and young people.

Grace Haydon, senior advice and information officer at Epilepsy Action, said: “The newly updated NICE guideline for epilepsy is important, because it tells healthcare professionals what treatments, tests and information they should offer to people with epilepsy.

“NICE makes recommendations to the NHS in England and Wales about the treatment and care it should provide for different health conditions. Its guidelines are also taken into account in Northern Ireland.

“It’s also important for people with epilepsy to know about the NICE guideline, because it sets out the standards of treatment and care you should be able to expect for your epilepsy.

“We know that in reality, many people with epilepsy aren’t getting access to the full range of services in the timescales that NICE recommends.

“Epilepsy Action will continue to campaign for people to get the care these guidelines recommend, so that everyone with epilepsy gets the care and support they need.”

The guidelines also state that a doctor should urgently refer someone who has had a breakthrough seizure after a period of being seizure free. Urgent assessments should happen within two weeks.

Those who might be suitable for epilepsy surgery and have an epilepsy likely to be resistant to epilepsy medicines should also have an early referral for surgery assessment, according to NICE.

The full guidelines are available on the NICE website.