The National Institute for Health and Care Excellence (NICE) has released the draft updated national guidance and advice for epilepsy, which covers the diagnosis and management of the condition at all ages. The guideline also provides recommendations for research and is currently open for consultation by stakeholders until 22nd December 2021. This consultation period provides an opportunity for stakeholders to comment on the guidelines and for the guidelines to be assessed for their impact on equality.

You can find the NICE draft guidance on epilepsy here and its consultation details here.

What does NICE do and what are the guidelines?

NICE is an independent organisation that provides evidence-based recommendations for health and social care in England. They develop guidelines based on the best available evidence, providing recommendations put together by experts, people using services, carers and the public. The guidelines set out the care and services suitable for most people with a specific condition or need.

What is covered in the draft epilepsy guidelines?

The draft epilepsy guidelines cover recommendations on the diagnosis and assessment of epilepsy, information and support needs, specialist services, treatments for epilepsy, non-pharmacological treatments, comorbidities in epilepsy, reducing the risk of epilepsy-related deaths and service provision and transition.

The guidelines also include key recommendations for future research into epilepsy such as antibody testing, complex epilepsy syndromes, risk prediction tool for all-cause epilepsy-related death, vagus nerve stimulation, and psychological treatments and drug monitoring in women and girls. Further research recommendations include digital health technologies, antiseizure medication for repeated or cluster seizures, risk prediction tool for second seizure and the ketogenic diet.

Why are these recommendations important?

The updated epilepsy guidelines will provide recommendations to help health and social care professionals improve the quality of care and services delivered to people with epilepsy. The research recommendations also provide an insight into the key areas of epilepsy where more research is needed. This helps ensure organisations like Epilepsy Research UK are funding research that matters the most to people affected by epilepsy.

The involvement of the epilepsy community is vital to make sure the most meaningful research is being funded for those who will benefit most from it. That’s why Epilepsy Research UK is leading on a James Lind Alliance Priority Setting Partnership, alongside other prominent UK epilepsy charities, to establish the future research priorities for people with epilepsy. We’ll soon be launching the UK Epilepsy PSP national survey which will be collating the views of the entire UK epilepsy community. You can sign up to our newsletter here to make sure you don’t miss out!