MND Scotland Integrated Care Pathway – Mobility
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MND Scotland Integrated Care Pathway The Scottish MND Clinical Specialist Team Helen Lennox Dumfries & Galloway North, South & East Ayrshire Laura Cunningham Glasgow City (North, East, West) Cumbernauld North Lanarkshire (ML Postcodes) South Lanarkshire (ML Postcodes) Ann Silver Western Isles Glasgow City (South) North Lanarkshire (G Postcodes) South Lanarkshire (G Postcodes) Renfrewshire Janice Hatrick East Dunbartonshire West Dunbartonshire Inverclyde East Renfrewshire Renfrewshire Dianne Fraser Aberdeen City Susan Stewart Aberdeenshire Moray Moira Flett Orkney Dorothy Storey Shetland Andrew Bethell Highland Jacqui McMillan Argyll & Bute Carolyn Webber Dundee City Dee McAleer Angus Gill Craig Perth & Kinross North East Fife Gill Stott Edinburgh City Alison McEleney Borders East, West & Mid Lothian Laura Marshall Stirlingshire Falkirk Clackmannanshire Loch Lomond & Trossachs Dunfermline & West Fife Kirkcaldy & Levenmouth Glenrothes NATIONAL NURSING LEAD FOR MOTOR NEURONE DISEASE/ CONSULTANT NURSE Judith Newton, RGN MSc(R) University of Edinburgh, Centre of Clinical Brain Sciences, Chancellors Building, Little France, Edinburgh EH16 4SB Mobile: 07702858820 Email:[email protected] [email protected] MND CARE CENTRE - WEST MND CARE CENTRE – MND CARE CENTRE – TAYSIDE Helen Lennox ORKNEY Carolyn Webber Regional Care Specialist for MND Moira Flett Nurse Specialist - MND Room L2/70, 2nd Floor MND Care Advisor Department of Neurology Dept Neurosurgery, Institute of Balfour Hospital South Block Level 6 Neurological Sciences New Scapa Road Ninewells Hospital The Queen Elizabeth University Kirkwall Dundee, DD1 9SY Hospital Glasgow Orkney 1345 Govan Road KW15 1BH Tel: 01382 425726 Glasgow, G51 4TF Mobile: 07814285893 Tel: 01856 888032 Email: [email protected] Tel: 0141 201 2380 Email: [email protected] Mobile: 07973929371 Dee McAleer Email: [email protected] MND CARE CENTRE – Nurse Specialist - MND Department of Neurology Laura Cunningham NORTH South Block Level 6 Regional Care Specialist for MND Dianne Fraser Ninewells Hospital Room L2/70 ,2nd Floor Clinical Specialist for Motor Dundee, DD1 9SY Dept Neurosurgery, Institute of Neurone Disease Tel: 01382 425726 Neurological Sciences Room 4.26 Mobile: 0773051435 The Queen Elizabeth University 4th Floor Email: [email protected] Hospital Glasgow Ashgrove House Gill Craig 1345 Govan Road Aberdeen Royal Infirmary Specialist Nurse MND Glasgow, G51 4TF Foresterhill Department of Neurology Tel: 0141 201 2381 Aberdeen AB25 2ZN South Block - Level 6 Mobile: 07972624586 Tel: 01224 554388 Ninewell Hospital Email: Mobile: 07980924476 Dundee, DD1 9SY [email protected] Email: [email protected] Tel: - 01382 425726 Ann Silver Susan Stewart Mobile - 07976648176 Regional Care Specialist for MND Clinical Specialist for MND Email: [email protected] Room L2/70, 2nd Floor Room 4.26 Dept Neurosurgery, Institute of 4th Floor Neurological Sciences MND CARE CENTRE – EAST Ashgrove House The Queen Elizabeth University Aberdeen Royal Infirmary Gill Stott Hospital Glasgow Foresterhill MND Clinical Specialist 1345 Govan Road Aberdeen AB25 2ZN Department of Clinical Neuroscience Glasgow, G51 4TF Western General Hospital Tel: 01224 554388 Tel: 0141 201 2380 Crewe Road Mobile: 07976 557934 Edinburgh, EH4 2XU Mobile: 07971368780 Email: [email protected] Email: [email protected] Tel: 0131 5372131 Mobile: 07711386201 Janice Hatrick Email: [email protected] Regional Care Specialist for MND Room L2/70, 2nd Floor MND CARE CENTRE – Alison McEleney Dept Neurosurgery, Institute of HIGHLAND MND Clinical Specialist Neurological Sciences Department of Clinical Neuroscience Andrew Bethell The Queen Elizabeth University Western General Hospital MND Clinical Specialist Hospital Glasgow Crewe Road Nairn Town & County Hospital 1345 Govan Road Edinburgh, EH4 2XU Cawdor Road Glasgow, G51 4TF Tel: 0131 5372131 Nairn, IV12 5EE Tel: 0141 201 2380 Mobile: 07711386202 Mobile: 07971368793 Mobile: 07815507942 Email: Email: Email: [email protected] [email protected] [email protected] Jacqui MacMillan MND CARE CENTRE – CENTRAL MND CARE CENTRE – MND Advanced Nurse BELT SHETLAND NHS Highland, Argyll & Bute Laura Marshall Lorn and Islands Hospital MND Specialist Nurse Dorothy Storey Glengallan Road Forth Valley Royal Hospital MND Care Advisor Oban, PA34 4HH Office J, Desk 10 Neurology Department The Gilbert Bain Hospital Stirling Road Mobile: 07557 256690 South Road Larbert, FK5 4WR Email: [email protected] Shetland Direct Dial: 01324 566870 ZE1 0TB Tuesday - Wednesday NHS Forth Valley Tel: 01595 743000 Ext 3197 Email: [email protected] Victoria Hospital’ Ward 6, Hayfield House, Kirkcaldy, KY2 5AH Telephone: 07973739795 Thursday & Friday NHS Fife Acknowledgements MND Scotland acknowledges the debt it owes to the original contributors to the Champlain Integrated Care Plan on which this Scottish version is modelled. We also acknowledge the work done by the working group of the United Kingdom Royal College of Nurses who developed the document “A Pathway for the Management of Pain in Motor Neurone Disease,” which is now out of print, but has been incorporated and updated within this booklet. We also wish to draw attention to the excellent resources provided by MND Australia at www.mndcare.net.au for both professionals and those living with the condition, which are referenced within this booklet.. A Message to the Primary Carer When a member of the family is diagnosed with MND, it can be an overwhelming time. It is therefore necessary that a family member, a relative or a friend understands the prognosis of MND and who to contact for advice and support during this time of great distress. It is hoped that this booklet will provide you with a fuller understanding of MND and offer you guidance and support to help with decision making. As soon as a diagnosis is confirmed, families should be put in contact with a member of the MND Scotland Care Team by their Neurologist. The care team is there to identify and source additional support as required for the particular stage of the disease. The course of MND is variable, so the symptoms experienced and the order in which they appear will vary from individual to individual and not everyone affected will necessarily experience all of the possible symptoms. You are not alone; although most health care professionals will have little to do after their initial visit early in the disease, they will, however, come to your aid as things change and more input is required – even if they haven’t been in touch for several months. All it takes is a phone call from you advising them of how things have changed. Taking care of your own health and wellbeing is rarely a primary carer’s priority and, therefore, the carer’s own health is often not given the attention it deserves. However, it is imperative that family carers monitor their own health with the supervision of their GP and think about compassionate leave or a change to working hours if the health of the primary carer is at risk or might become an issue. Please ensure that this document is made known to the various care professionals who are involved with you and your family so they can order a copy for themselves from MND Scotland. TABLE OF CONTENTS Page Introduction 1 What is an Integrated Care Pathway? Why have an Integrated Care Pathway for MND? Who is the Target Audience for the Integrated Care Pathway? How should the Integrated Care Pathway be used? Key Considerations in MND Disease Management 2 Rate of Disease Progression Variable Symptomologies Energy Conservation Emotional Impact of MND Making Best Use of Knowledgeable Professionals Energy Conservation Techniques 4 Advance Care Planning and MND 5 Revised ALS Functional Rating Scale (ALSFRS-R) 6 Health Improvement Scotland’s Clinical Standards for Neurological Services 7 The Integrated Care Pathways. 11 Mobility Pathway 11 Eating, Drinking and Swallowing Pathway 15 Communication Pathway 18 Respiratory Pathway 20 Cognitive and Behavioural Changes 22 Sexuality 23 Physical Pain 24 Psychological Pain 25 Spiritual Pain 26 Clinical Standards specific to Motor Neurone Disease 31 Appendices A, Key Service Resources in Scotland for information and MND Management 33 B, Palliative Care Resources 37 C, Respite Care Services 42 D, MND Books, DVDs and Videos 43 INTRODUCTION What is an Integrated Care Pathway? An integrated care pathway (ICP) is a description of a person’s anticipated care needs that should be addressed by the multidisciplinary team. It summarises an overview of disease progression under different headings and identifies potential problems that might arise for the client and carer as the illness advances. It also offers a list of resources which should be accessed as required to support clients with MND at different stages of the disease. In most cases access to these specialist services or the suggested resources will require referral from a member of the multidisciplinary team. This anticipatory approach to addressing care needs can benefit clients and families by helping members of the multidisciplinary team identify solutions to potential needs before they arise. Why have an Integrated Care Pathway for MND? The goal of an ICP is to promote and support the development of care partnerships and to provide information to empower clients and their carers. Due to the relatively small number of people affected by MND, only a few staff within the NHS or social work departments will have the necessary training and experience to develop a high level of expertise in the management of this disease. This integrated care pathway has been developed to assist carers in understanding the disease process of MND from diagnosis to end of life and to suggest appropriate resources and interventions for different stages of the condition. Who is the Target Audience for the Integrated Care Pathway? The ICP is intended to empower both professional and non-professional care providers. Experience of other care plans, for example the Champlain Care Plan developed in Ontario, Canada, on which this ICP draws heavily, has demonstrated, that both people with MND and their families can benefit from an ICP like this.