A White Paper on the medical and social needs of people with epilepsy and intellectual disability: The Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy |
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| Authors: | Mike Kerr Christine Linehan Rose Thompson Marco Mula Antonio Gil‐Nagal Sameer M. Zuberi Mike Glynn |
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| Affiliation: | 1. Institute of Psychiatric Medicine & Clinical Neurosciences, Cardiff University, , Cardiff, United Kingdom;2. School of Social Work and Social Policy, Trinity College Dublin, , Dublin, Ireland;3. School of Psychology, University College Dublin, , Dublin, Ireland;4. Tizard Centre, University of Kent, , Kent, United Kingdom;5. WHO Collaborative Centre for Mental Health Services Development, Unit for Social and Community Psychiatry, Barts and the London School of Medicine, Queen Mary University of London, , London, United Kingdom;6. Epilepsy Group, Atkinson Morley Regional Neuroscience Centre, St George's Hospital and Institute of Medical and Biomedical Sciences, St George's University of London, , London, United Kingdom;7. Department of Neurology, Epilepsy Program, Hospital Ruber International, , Madrid, Spain;8. Paediatric Neurosciences Research Group, Royal Hospital for Sick Children, , Glasgow, United Kingdom;9. College of Medical, Veterinary & Life Sciences, University of Glasgow, , Glasgow, United Kingdom;10. Epilepsy Ireland & Immediate Past President IBE, , Dublin, Ireland |
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| Abstract: | This White Paper builds on the publication of the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) report “Listening for a change—medical and social needs of people with intellectual disability who have epilepsy” (Listening for a change the medical and social needs of people with epilepsy and intellectual disability, ILAE, 2013). The Paper presents an overview of the recommendations of the report, which aim to improve the health and social care of this important population of people with epilepsy worldwide. Actions in four domains are indicated: (1) the development of standards and initiatives that would enhance diagnosis, pathways to investigation, and treatment; (2) the development of guidelines for treatment, specifically best practice in the management of antiepileptic drugs including rescue medication; (3) the development of standards for primary care, multidisciplinary teamwork, and clinical consultations, with emphasis on the need to enhance communication and improve access to information; and (4) the enhancement of links among different stakeholders including medical services, educational establishments, employment services, organizations providing opportunities for social engagement, and family members. The breadth of needs of this population is a challenge to the epilepsy world, spanning all the professional groupings, care providers, and the research modalities in epilepsy. |
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| Keywords: | Intellectual disability Families White Paper Health care Social care |
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