New guidance to improve epilepsy treatment for people with learning disabilities was launched in November 2020.
The guidance report, Step Together, reveals that huge variations in levels of care might be failing people with epilepsy and a learning disability.
Four out of every 10 people with epilepsy also have a learning disability and are at a higher risk of premature death than the general population.
The guide describes good quality joined-up services for people with a learning disability and epilepsy. It allows commissioners to assess whether needs are met by the current services. It also offers examples of ways to increase joint working, improve services and reduce the variation of levels of care.
The report was created jointly by a number of organisations. They include 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.
Dr Rohit Shankar, consultant neuropsychiatrist and project lead for Step Together, said the guidance will be useful to care providers and commissioners. He said it will allow them “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”. He added that the guidance should be used to transform services and be ambitious for good epilepsy management and getting the best possible seizure control for people with epilepsy and a learning disability.
“It is clear more [joint] working between general practice, learning disability mental health services, specialist nursing services, and neurology and epileptology services is needed,” Dr Shankar added.
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.”
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