The development of the UK National Institute of Health and Care Excellence evidence-based clinical guidelines on motor neurone disease

Abstract

The care of people with motor neuron disease/amyotrophic lateral sclerosis is often complex and involves a wide multidisciplinary team approach. The National Institute for Health and Care Excellence (NICE) in the UK has produced an evidence based guideline for the management of patients. This has made recommendations, based on clear evidence or consensus discussion. The evidence is often limited and areas for further research are suggested.

Keywords:

• Guideline
• multidisciplinary care
• NICE Guideline

Acknowledgements

The authors wish to acknowledge the:

The wider Guideline Development Group:

Robert Angus, Respiratory Physician, Liverpool

Steven Bloch, Speech and Language Therapist, London

Julie Brignall-Morley, Community Matron, Rotherham and Doncaster

Caroline Brown, Physiotherapist, Stoke on Trent

Annette Edwards, Consultant in Palliative Medicine, Leeds

Roch Maher, Patient/carer member

Rachael Marsden, MND Nurse Specialist, Oxford

Jennifer Rolfe, Occupational therapist, Oxford

Ian Smith, Respiratory Physician, Cambridge

Rachel Starer, General practitioner, Didcot

Jean Waters, Patient/carer member

Sandra Smith, Patient/carer member

Co-opted advisors

Sharon Abrahams, Professor of Neuropsychology, Edinburgh

Angeline Brooks, Neurosciences Dietitian, London

Karen James, Principal Social Worker, London

NCGC Technical Team

Liz Avital, Senior Research fellow

Katie Broomfield, Process Assistant

Jill Cobb, Information Scientist

Dalia Dawoud, Health Economist

Caroline Farmer, Senior Research Fellow

Edward Griffin, Health Economist

Alexander Haines, Senior Health Economist

Yasmina Hedhli, Project Manager

Sadia Janjua, Research Fellow

Katie Jones, Senior Project Manager

Julie Neilson, Senior Research Fellow

Amelia Unsworth, Senior Project Manager

Natalie Wood, Project Manager

This work was undertaken by the authors, which received funding from the National Institute for Health and Care Excellence. The views expressed in this publication are those of the authors and not necessarily those of NICE

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.