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Epilepsy, intellectual disability and the epilepsy care pathway: improving outcomes

Published online by Cambridge University Press:  10 November 2022

Michael Kerr*
Affiliation:
Locum consultant psychiatrist with Powys Teaching Health Board, Bronllys, UK. His clinical practice is in the epilepsies associated with intellectual disability and in the assessment and treatment of epilepsy and psychiatric disorder. He has been closely associated with initiatives in improving the public health of people with intellectual disabilities, including developing the Cardiff Health Check, which is used across England and Wales. He is Emeritus Professor of Learning Disability Psychiatry at Cardiff University and has been appointed an Ambassador for Epilepsy by the International League Against Epilepsy (ILAE).
Geraldine Goodwin
Affiliation:
Qualified as a registered nurse in learning disability (RNLD) in 1999, and in 2006 as a specialist community practitioner for learning [intellectual] disabilities. She is employed by Powys Teaching Health Board, Bronllys, UK, working with adults with intellectual disabilities in the community. She is the champion for the Health Equalities Framework initiative within the team. She has a special interest in epilepsy and service development in this area of work.
Jane Hanna
Affiliation:
Studied law (Cambridge, Oxford, UK) and was a Fellow at the University of Oxford. She is the co-founder and chief executive officer of SUDEP Action (based in Wantage, UK), a charity that has worked on tackling inequalities for people with epilepsy and their families over 25 years since she was herself suddenly bereaved. She leads a team closely associated with research on sudden unexpected death in epilepsy (SUDEP) and epilepsy risks and support services for families. She has been awarded a Social Impact Award by the ILAE and an OBE for services for families.
*
Correspondence Michael Kerr. Email: kerrmp@cardiff.ac.uk
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Summary

The strong, life-long association between epilepsy and intellectual disability means that psychiatric teams, and the services they exist in, have a need for significant competencies in the field of epilepsy. This article addresses these competencies through the pathway of care. It will focus on those areas most relevant to psychiatric care and, when possible, explore where technology has begun to influence practice. The pathway leads from diagnosis through, in some cases, to mortality and support of the bereaved in psychiatric care. We will approach the topic through showing how the intertwining themes of information, empowerment, access to care, assessment of risk and psychological support are important. Technological advances are supporting changes in most of these areas, and psychological support, a knowledge of the needs of people with epilepsy and intellectual disability and epilepsy skills remain the foundation in the application of these advances.

Information

Type
Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
Copyright © The Author(s), 2022. Published by Cambridge University Press on behalf of the Royal College of Psychiatrists
Figure 0

TABLE 1 Selected support needs related to domains of care for individuals with intellectual disabilities

Figure 1

FIG 1 The EpSMon app. © SUDEP Action.

Figure 2

TABLE 2 Psychological support on the epilepsy care pathway

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