NEW guidance to improve epilepsy treatment for people with learning disabilities is being launched on a Royal Society of Medicine webinar next Tuesday (17 November).
Forty per cent of people with epilepsy also have a learning disability and are significantly more likely to die prematurely than the general population.
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 the Step 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, 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.