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Concise Guidance to Good Practice CONCISE GUIDANCE TO GOOD PRACTICE A series of evidence-based guidelines for clinical management NUMBER 10 Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care NATIONAL GUIDELINES March 2008 BSRM British Society of Rehabilitation Medicine Clinical Standards Department Guideline Development Group The purpose of the Clinical Standards Lynne Turner-Stokes DM FRCP, Nigel Sykes FRCP FRCGP, Eli Silber Department of the Royal College of Physicians FCP(Neuro)SA MD and Lucy Sutton MSc prepared this guidance on is to improve patient care and healthcare behalf of the multidisciplinary Guideline Development Group provision by setting clinical standards and convened by the National Council for Palliative Care (NCPC) and the monitoring their use. We have expertise in the British Society of Rehabilitation Medicine (BSRM) in association with development of evidence-based guidelines and the Clinical Standards Department of the Royal College of the organisation and reporting of multicentre Physicians. comparative performance data. The department has three core strategic objectives: Professor Lynne Turner-Stokes (BSRM) to define standards around the clinical work Consultant in Rehabilitation Medicine, Herbert Dunhill Chair of Rehabilitation, King’s College London of physicians, to measure and evaluate the implementation of standards and its impact Dr Nigel Sykes (Association of Palliative Medicine) on patient care; and to effectively implement Consultant in Palliative Medicine, St Christopher’s Hospice, these standards. London Dr Eli Silber (Association of British Neurologists) Our programme involves collaboration with Consultant Neurologist, King’s College Hospital Trust specialist societies, patient groups and national bodies including the National Lucy Sutton (NCPC) National Policy Lead, National Council for Palliative Care, London Institute for Health and Clinical Excellence (NICE), the Healthcare Commission and the Vicki Morrey (NCPC) Health Foundation. National Council for Palliative Care Long-term Neurological Conditions Group Chair; Chief Executive, Prospect Hospice, Swindon Concise Guidance to Tricia Holmes (Motor Neurone Disease Association (MNDA)) Director of Care Development, Motor Neurone Disease Association, Good Practice series Northampton The concise guidelines in this series are Sue Thomas (Royal College of Nursing) intended to inform those aspects of physicians’ Nursing Policy and Practice Advisor, Royal College of Nursing, clinical practice which may be outside their London own specialist area. In many instances the Sue Smith (MNDA) guidance will also be useful for other clinicians Regional Care Advisor, Motor Neurone Disease Association, including GPs and other healthcare Northampton professionals. Dr Mark Lee The guidelines are designed to allow clinicians Consultant in Palliative Medicine, St Benedict’s Hospice, Sunderland to make rapid, informed decisions based Judi Byrne (Sue Ryder Care) wherever possible on synthesis of the best Palliative Initiative in Neurological Care (PINC) Co-ordinator, available evidence and expert consensus Sue Ryder Care, London gathered from practising clinicians and service Janice Brown users. A key feature of the series is to provide Senior Lecturer, University of Southampton both recommendations for best practice, and Gill Ayling (Department of Health) where possible practical tools with which to Lead, National Service Framework for Long-term (Neurological) implement it. Conditions, Department of Health Series Editors: Lynne Turner-Stokes FRCP and Dr Christopher Roy (BSRM) Bernard Higgins FRCP Consultant in Rehabilitation Medicine, Southern General Hospital, Glasgow Acknowledgements Contents The British Society of Rehabilitation Medicine (BSRM), the Guideline Development Group i Royal College of Physicians and the National Council for Acknowledgments 1 Palliative Care all contributed funding or resources towards the guidelines’ development. Support for the Background 2 initial literature search was provided by a grant from the The challenge of lifelong care for people with LTNCs 3 Department of Health, and funding for its update and preparation of the manuscript was provided by the Aims and methodology 3 Dunhill Medical Trust and the Luff Foundation. The Brief summary of the evidence 3 authors are grateful to Tariq Saleem, Barbara Sullivan The respective roles of neurology, rehabilitation and and Richard Harding (King’s Centre for Palliative Care in palliative care 4 Neurology, King’s College London) and to Judith Sargeant (Department of Health) for their help with the initial THE GUIDELINES 9 literature gathering and grading. Implications for implementation 10 Training 10 Tools for implementation 10 Citation: Royal College of Physicians, National Council for Palliative Care, British Society of Rehabilitation Medicine. References 10 Long-term neurological conditions: management at the Appendices interface between neurology, rehabilitation and palliative 1 Guideline development process 12 care. Concise Guidance to Good Practice series, No 10. 2 Methods used to evaluate the evidence 13 London: RCP, 2008. 3 Tools for implementation 15 A. Checklist to use on admission of patients Copyright with LTNCs 15 All rights reserved. No part of this publication may be B. Key areas of symptom management with care reproduced in any form (including photocopying or pathways for: storing it in any medium by electronic means and Bowel management 17 whether or not transiently or incidentally to some other Urinary incontinence 18 use of this publication) without the written permission of Pain 19 the copyright owner. Applications for the copyright Nausea and vomiting 20 owner’s permission to reproduce any part of this Shortness of breath 21 publication should be addressed to the publisher. Copyright © 2008 Royal College of Physicians Royal College of Physicians of London 11 St Andrews Place, London NW1 4LE www.rcplondon.ac.uk Registered Charity No 210508 ISBN 978-1-86016-330-2 Review date: 2011 Designed and typeset by the Publications Unit of the Royal College of Physicians Printed in Great Britain by The Lavenham Group Ltd, Suffolk Long-term neurological conditions 1 The National Service Framework (NSF) for Long- Long-term neurological conditions (LTNCs) term Conditions* advocates lifelong care for people 2 comprise a diverse set of conditions resulting with LTNCs. It highlights the need for integrated care and joined-up services. Within its 11 Quality from injury or disease of the nervous system Requirements (QRs), it makes recommendations for that will affect an individual for life. Some 10 the provision of specialist neurology (QRs 2/3), million people in the UK are living with a rehabilitation (QRs 4–6) and palliative care (QR 9) neurological condition which has a significant services to support people throughout and to the end impact on their lives, and they make up 19% of their lives. In addition, QR 11 makes of hospital admissions. These guidelines build recommendations about the management of people on the Quality Requirements in the National with LTNCs when receiving care for other Service Framework for Long-term conditions, in any health or social care setting. (Neurological) Conditions to explore the When someone with an LTNC is admitted to a interaction between specialist neurology, general hospital setting for a procedure or because of rehabilitation and palliative care services, and acute illness, hospital staff have to manage both the how they may best work together to provide illness and the LTNC. Many patients are maintained long-term support for people with LTNCs and on finely tuned management routines (eg 24-hour the family members who care for them. The spasticity management programmes, treatment for guidelines also provide some practical advice PD symptoms, or bladder/bowel regimens), which, if for other clinicians when caring for someone disturbed, may lead to increased morbidity and with an LTNC, and outline indications for distress, and can take weeks to re-establish. In specialist referral. addition, patients require an accessible environment and access to their usual equipment, eg wheelchair, communication aid. The NSF emphasises the importance of recognising the expertise of a person and their family in managing the condition, of Background maintaining close contact with the individual’s Long-term neurological conditions (LTNCs) form a regular team, and of calling for specialist help, if diverse set of conditions resulting from injury or required. However, as many generalists have received disease of the nervous system that will affect an little training in these areas of clinical practice, they individual for the rest of their lives. They include: are sometimes uncertain about the type of help that the different services can offer for people with ■ sudden onset conditions (eg acquired brain injury LTNCs. of any cause (including stroke), spinal cord injury) ■ intermittent conditions (eg epilepsy) ■ progressive conditions (eg multiple sclerosis (MS), motor neurone disease (MND), Parkinson’s disease (PD) and other neurodegenerative *National Service Framework for Long-term (Neurological) disorders) Conditions: The Department of Health’s National Service ■ stable conditions with/without age-related Framework (NSF) for Long-term Conditions was published in March 2005. Although much of the guidance applied to degeneration (eg polio or cerebral palsy). anyone living with a long-term condition, the main focus of Taken together,
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