An intervention for people with learning disabilities and epilepsy
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An intervention for people with learning disabilities and epilepsy

Silvana Mengoni Researcher in psychology and learning disabilities, University of Hertfordshire
Bob Gates Professor of learning disabilities, University of West London
Marie-Anne Durand Assistant professor, Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire

Silvana Mengoni and colleagues reflect on patient and public involvement in testing the feasibility of a full-scale randomised controlled trial of a resource from Books Beyond Words

Epilepsy is relatively common in people with learning disabilities, and can be complex and refractory to treatment, with negative effects on quality of life and service costs. This article describes a randomised controlled feasibility trial, called Wordless Intervention for Epilepsy in Learning Disabilities, under way at Hertfordshire Partnership University NHS Foundation Trust. Recruitment of people with learning disabilities and epilepsy to the trial has been affected by logistical issues, such as difficulties in identifying potential patients and contacting carers. However, public and patient involvement has improved study design and management, and has helped maximise recruitment. Should the present study confirm feasibility, a full-scale randomised controlled trial will address the effects of the Books Beyond Words title Getting on With Epilepsy as an intervention for people with learning disabilities and epilepsy.

Learning Disability Practice. 18, 2, 28-31. doi: 10.7748/ldp.18.2.28.e1620


Peer review

This article has been subject to double blind peer review

Conflict of interest

This article is the result of independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit Programme (Grant reference number PB-PG-0213-30042). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health

Received: 11 December 2014

Accepted: 09 January 2015

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