Guide to Good Practice


The Dystonia Society is grateful to the following medical professionals who kindly contributed to this report.

This guide is an update of the Dystonia Society’s 2011 Guide to Good Practice. The following reviewed and contributed material to the updated document:

Dr Lucinda Carr, Consultant Paediatric Neurologist, Great Ormond Street Hospital, London
Dr Mark Edwards, Senior Lecturer and Honorary Consultant Neurologist, UCL Institute of Neurology and National Hospital for Neurology and Neurosurgery
Dr Jean-Pierre Lin, Consultant Paediatric Neurologist, Evelina Children’s Hospital, St Thomas’s Hospital, London
Dr Marie-Helene Marion, Chair of the British Neurotoxin Network
Dr Kathryn Peall, Clinical Lecturer, Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University School of Medicine

The Dystonia Society is grateful to the following who kindly contributed to the Good Practice Guide:

Dr Chris Clough, Consultant Neurologist, King's College Hospital, London, and Neurology Advisor to Department of Health
Elizabeth Edmonds, Dystonia Nurse Specialist, Old Harold Wood Hospital Site, Disablement Service Centre/Long Term Conditions, Harold Wood, Essex
Hortensia Gimeno, Senior Paediatric Occupational Therapist, Complex Motor Disorders team, Assessment and Management Service, Evelina Childrens Hospital, St Thomas’s Hospital, London
Maurice Hawthorne FRCS, Consultant ENT Surgeon, Botulinum toxin clinics - James Cook University Hospital, Walkergate Park Hospital
Lesley Kidd, Nurse Manager, Neurology Rehabilitation Outpatients, Walkergate Park Centre for Neurorehabilitation and Neuropsychiatry, Newcastle upon Tyne
Kylee Tustin, Clinical Specialist Physiotherapist, Complex Motor Disorders Service, Evelina Children’s Hospital, St Thomas’s Hospital, London
Professor Tom Warner, Professor of Clinical Neuroscience, UCL Institute of Neurology
Helen Wilkinson, Clinical Specialist Physiotherapist/Team leader, Musgrove Park Hospital, Taunton, Somerset
Suzanne Yates, Senior Specialist Neuroscience Dietitian, The National Hospital for Neurology and Neurosurgery, London

This report was researched and compiled by Val Wells, Service Development Manager, and Paul King, CEO, for The Dystonia Society.