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New NICE epilepsy guidelines and what they mean for our community

Angie Pullen

Director of Epilepsy Services, Epilepsy Action NICE guideline development group member

- Tipping Point
- NICE epilepsy guidelines and what they mean for our community

The National Institute for Health and Care Excellence (NICE) is an independent organisation that provides evidence-based guidance to improve health and social care in England and Wales. NICE develop guidelines based on the best available research evidence. These provide recommendations for diagnosis, treatment and future research and are put together by experts, including people using services, carers and healthcare professionals. Over the past two years, NICE has been working with an expert group to develop new guidance and advice on the diagnosis and management of epilepsy in children, young people and adults. Angie Pullen, from Epilepsy Action, was a member of the guideline development group, and describes the process in this week’s research blog.  

Along with a committee of over 20 clinicians and patient advocates, I have been working to update the NICE Guidelines for Epilepsy, which were published on 27th April 2022. The final guidelines were agreed after public consultation and sent to stakeholders, including organisations such as Epilepsy Research UK. All comments were then considered and further evidence assessed, after which the guidelines were signed off and published by NICE’s Guidance Executive, highlighting the importance of collaboration and consultation that have been integral throughout the process. 

Why are these NICE Guidelines for Epilepsy important? 

The epilepsy guidelines provide up-to-date recommendations to help health and social care professionals improve the quality of care and services delivered to people with epilepsy. The guidelines also include research recommendations, which 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 will provide the evidence needed to improve the care and lives of people affected by epilepsy. 

What has changed since the last NICE Guidelines? 

A key difference is that the guidelines for adults and children were reviewed in parallel, with a focus on the transition from children’s to adults’ epilepsy services. There is now a focus on involving young people with epilepsy in planning for their transition to adult epilepsy services, ensuring this transition is individually tailored to the young person and that epilepsy management is reviewed by both paediatric and adult multidisciplinary teams during the process.  

The new guidance also gives clearer information on diagnostic tests. It recommends the earlier referral of those who might be suitable for surgery and includes the ketogenic diet as a possible treatment for both adults and children. Access to specialist nurses and reviews of mental health as part of routine epilepsy care are recommendations that we know matter to children, young people and adults. 

What are the implications of the NICE Guidelines on future research? 

Along with making recommendations for healthcare and services, the guideline committee also made recommendations for future research into epilepsy. These included antibody testing, investigating the role of immunomodulation strategies, anti-seizure therapies for complex epilepsy syndromes, risk reduction tools for all causes of epilepsy-related death, and vagus nerve stimulation. Other recommendations for future research included psychological treatments, the monitoring of anti-seizure medications in women and girls, and the role of digital health technologies. 

These research recommendations, together with the World Health Organisation Intersectional Global Action Plan (IGAP) on Epilepsy, and the results of the UK Epilepsy Priority Setting Partnership, which will both be published later this year, have the potential to shape future research for the next generation. The strong involvement of the epilepsy community in all three is making sure research into epilepsy is meaningful for those who will benefit most. You can read more about the IGAP and the UK Epilepsy PSP on the Research Blog later this month.  

How did you find the process of developing the NICE Guidelines?  

NICE provided excellent training for lay people (experts by experience) who are involved in developing guidelines. I learned a lot about different types of evidence and how the quality of evidence is assessed. In addition to myself we had ongoing input from a young person with epilepsy, a parent and a person with epilepsy who provides awareness training. This gave us a good mix of experience to bring to discussions with GPs, nurses, neurologists, pharmacists, psychologists, radiologists and surgeons. We had a regular slot to focus on issues from a patient and carer perspective. I found that having managed an epilepsy advice and information service for ten years gave me lots of examples of the epilepsy care people experience.  

The lay members worked hard to ensure the guidelines were written in an accessible way. We were able to use the consultation results to strengthen the focus on people with learning disabilities, care planning and need for good conversations about the risks of epilepsy related death.   

For me, the main highlight has been the value placed on input and insight from people living with and affected by epilepsy. The guidance will inform the way that children, young people and adults with epilepsy will be cared for, and so it is incredibly inspiring to see this as a patient-centred process. I am now looking forward to working on the implementation of the guidelines and the research recommendations. 

-Angie Pullen