Epilepsy guidance to improve treatment for people with learning disabilities

RSM webinar: Tuesday 17 November, 10.00am to 4.15pm

Session introducing new guidance: 1.00pm

Forty per cent of people with epilepsy also have a learning disability and are significantly more likely to die prematurely than the general population. Step Together, a new report to be launched during a Royal Society of Medicine webinar on Tuesday 17 November, reveals how huge variations in levels of care might be failing this group of vulnerable people.

The webinar, which will be hosted by the RSM’s Intellectual Disability Forum, will highlight the current gaps in knowledge about this vulnerable population, and discuss potential solutions, including the launch of theStep Together report.

Dr Rohit Shankar, consultant neuropsychiatrist and project lead for Step Together, said:

This guidance should enable both commissioners of care and providers of care to recognise what is currently available to people and what could or should be available if their needs are going to be fully and satisfactorily met. It is clear more collaborative working between general practice, learning disability mental health services, specialist nursing services and neurology and epileptology services is needed. We must use this guidance to transform services and be ambitious for good epilepsy management and optimum seizure control for people with a learning disability.

Angie Pullen, Epilepsy Services Director at Epilepsy Action, said:

People with epilepsy and learning disabilities, their carers and families have told us that they need services to work better together. Too often they have difficulty understanding how to access the support they need. People found that no one was listening to their concerns or taking action to put things right. This Step Together guidance adopts the principles of ‘Ask Listen Do’ which are used by Epilepsy Action and promoted by NHS England. The launch of Step Together marks the start of a journey towards improving the experiences of people with epilepsy and a learning disability and working together for better care and support.

The report was produced in collaboration with organisations including Epilepsy Action, the International League against Epilepsy – British Chapter, the Royal College of Psychiatrists, Research in Developmental Neuropsychiatry and the Epilepsy Specialist Nurses Association UK.

The principles set out in the guidance also apply to people with autism who also have epilepsy but not necessarily a learning disability.


Session one: Are we failing people with epilepsy and intellectual disability?


Welcome and introduction

Professor Regi Alexander, President, Intellectual Disability Forum, Royal Society of Medicine


Epilepsy in people with intellectual disability – an overview

Professor Josemir Sander, Professor of Neurology and Clinical  Epilepsy, Department of Clinical and Experimental Epilepsy, Institute of Neurology of University College London


Learning from mistakes

Dr Ken Courtenay, Chair, Faculty of Psychiatry of Intellectual Disability, Royal College of Psychiatrists 


The view from the other side – challenges for a neurologist treating a person with intellectual disability

Professor Arjune Sen, Consultant Neurologist and BRC Senior Research Fellow, NICE Chair for Epilepsy Update 2022


Panel discussion

Chair: Dr Ashok Roy OBE, Co-Chair, Learning Disability Professional Senate and Clinical Advisor, Health Education England


End of session one and break

Session two: The vision of “Step Together – integrating care for people with epilepsy and a learning disability”


Welcome and introduction

Dr Roger Banks, National Clinical Director (Learning Disability), NHS England


Step Together – the report

Dr Rohit Shankar MBE, Consultant Neuropsychiatrist, Cornwall Partnership NHS Foundation Trust, Senior Clinical Lecturer Exeter Medical School and Project Lead- Step Together


Step Together – getting neurologists on board

Dr Rhys Thomas, Honorary Consultant in Epilepsy, Royal Victoria Infirmary and Intermediate Clinical Lecturer, Newcastle University


Step Together – children and transition

Professor Helen Cross OBE, Chair, International League Against Epilepsy (ILAE)


Holding service providers to account

Ms Angie Pullen, Epilepsy Services Director, Epilepsy Action


Standardising clinical delivery and training: The gold/silver/bronze model

Professor Matthew Walker, Chair, ILAE, British Chapter


Panel discussion

Chair: Dr Roger Banks 


Closing comments

Dr Martin Bollard, Immediate Past President, Intellectual Disability Forum, Royal Society of Medicine