Title: Physiotherapy guidelines for the Management of People with Motor Neurone Disease Date 24th November Document Author: Henrieke Dimmendaal /

Transcription

1 Clinical Guideline Ref: 1130 Version 5 Title: Physiotherapy guidelines for the Management of People with Motor Neurone Disease Date 24th November Document Author: Henrieke Dimmendaal / 2015 Ratified by: Laura Shenton Care and Clinical Policies Date: 17 th February 2016 Review date: 17 th February 2018 Links to policies: Torbay and South Devon NHS Foundation Trust (TSDFT) Information Governance Policy Feb 2015, TSD Information Management Policy Feb Purpose of this document 1.1. These guidelines apply to qualified Physiotherapists working within TSDFT of best Physiotherapy practice in the treatment and care of people with Motor Neurone Disease (MND), in both the acute setting as well as in the community. 2. Training 2.1. Clinicians should have access to other qualified staff that can support them if necessary The Motor Neurone Disease Peninsular Network is a resource that is available for further advice Physiotherapists are updated through regular attendance of a rehabilitation special interest group, MND special interest group and MND Network meetings. Skills and competencies will be reviewed at yearly appraisals Sharing best practice with GPs and other health and social care professionals who are caring for people living with MND. Professional s forum at A wide range of resources is provided by the Motor Neurone Disease Association via their website: or via their Helpline: Roles and Responsibilities 3.1. The Physiotherapist's role is delivered between neurological, palliative care and respiratory specialist staff The neurological Physiotherapist(s) aim: Version: 5 Page 1 of 13

2 To maintain optimum function and physical ability To provide support and education on how the person manages their condition To maintain mobility with active and passive exercise and provision of appropriate walking aids and wheelchair(s) To prevent contractures through the prescription of range of movement and stretching exercises, provision of splints, postural devices and management of tone 3.3. The respiratory and palliative care physiotherapist(s) role aim(s): To assess lung function and teach breathing exercises and techniques to maximise expansion and ability to cough and clear secretions To teach relaxation techniques 4. Referral and Prioritisation 4.1. Care of people who have Motor Neurone Disease should be provided via a multi-disciplinary team with good links and communication with all other disciplines and any other agencies involved Physiotherapy intervention should be provided by clinicians with experience of managing motor neurone disease, who can provide continuity of service. Where possible the named Physiotherapist should hold a static position. Clinicians should have access to other qualified staff that can support them if necessary. The Motor Neurone Disease Peninsular Network is a resource that is available for further advice and information Flexibility and priority of response needs to be ensured to maintain speed in service delivery. 5. Assessment 5.1. The assessment and clinical record must meet the organisation s clinical record guidelines (either individual or multidisciplinary) and need to include the following: 5.2. Subjective Assessment: Past medical history Current medical history Drug history Version: 5 Page 2 of 13

3 Course of the disease Social history and support network Lifestyle Expectations Respiration, symptoms of respiratory impairment: o Breathlessness o Orthopnoea o Recurrent Chest Infections o Disturbed Sleep o Non-Refreshing sleep o Nightmares o Daytime Sleepiness o Poor concentration and / or memory o Confusion o Hallucinations o Morning Headaches o Fatigue o Poor Appetite 5.3. Objective Assessment: Level of Consciousness and Orientation Basic Ability to Communicate Motor Ability Co-ordination Swallow Function Equipment and Environment Bladder and Bowel Function Mood Pain Muscle Tone Muscle Power Sensation Posture Version: 5 Page 3 of 13

4 Cognition, basic cognitive and behavioural screening and referral to appropriate profession Respiratory system, signs of respiratory impairment: o Increased respiratory rate o Shallow breathing o Weak cough o Weak sniff o Abdominal paradox (inward movement of the o abdomen during inspiration) o Use of accessory muscles of respiration o Reduced chest expansion on maximal o Inspiration 5.4. *NICE (2010) guidance states: A healthcare professional from the multidisciplinary team who has appropriate competencies should perform respiratory function tests at the following times (or arrange them to be performed): As part of the initial assessment to diagnose MND, or soon after diagnosis (To establish baseline function). Every 3 months, but possibly more or less often depending on: o Whether there are any symptoms and signs of respiratory impairment (see table 1 below) o Rate and progression of MND o The patient s preference and circumstances Refer to Consultant Respiratory Nurse Derriford hospital, mobile: or for a South Devon patient, Refer to Palliative Care Physiotherapist telephone number , but please use the pathway for MND Respiratory Support for the period of November 2015 January 2017, (appendix 1) The process of assessment might highlight the need to involve other members of the multidisciplinary team e.g. nursing, occupational therapy, speech and language therapy and respiratory medicine. Version: 5 Page 4 of 13

5 6. Goal Setting 6.1. Goal setting needs to be attained via a multi-disciplinary approach and should be person centred Goals should be focused at the level of activity and/or participation Goals should be timed and should make reference to long and short term aims. 7. Treatment/Management 7.1. The natural course of MND can be described as consisting of several stages. These are not clear-cut, but represent a continuum through which the speed of progression will vary from person to person. The stage of the disease can be used as a rough guide to assist Physiotherapists to plan treatment programmes in conjunction with thorough assessment of the individual problems and needs of the person. There is some evidence that exercise is beneficial in maintaining function The overall goals of intervention will vary as the condition progresses. Early stage - to optimise remaining function Middle stage - to maintain functional mobility Late stage - to maximise quality of life 7.3. Some aims will remain constant throughout intervention: Provision of information to patients and carers Provision of psychological support Consider referral to hospice for complex palliative care needs Early stage The person can mobilise and manage activities of daily living independently. There may be weakness of specific muscle groups that limits performance of tasks and/or endurance. Foot drop may be apparent on one or both sides and weakness of intrinsic muscles in one or both hands may interfere with fine motor activities. Physiotherapy may include: o Preserving optimum level of mobility Version: 5 Page 5 of 13

6 7.5. Middle stage o Active range of movement exercises o Strengthening Exercises o Aerobic Activities o Training in pacing activity/fatigue management o Stretching of affected joints o Teaching Breathing Exercises o Provision of appropriate equipment and assistive devices to support weak muscles. o Provision of appropriate walking aids o Person and carers instructed in performing active assisted and/or passive range of motion exercises at affected joints to prevent contractures o In the early stages exercises should be functional where possible and performed at an intensity to avoid extreme fatigue. o To provide person and / or carer with emotional support. The person may remain ambulatory but have severe weakness in certain muscle groups. Severe foot drop is likely and there may be marked weakness in one or both hands. The patient may need assistance to rise from a chair and there will be mild to moderate limitation of function. A wheelchair may be required for part of the day. Physiotherapy may include: o Provision of adaptive equipment (e.g. Ankle Foot Orthosis, splints, arm slings/trays, riser-recliner chairs) and wheelchair. Consider application to MNDA for rapid access to equipment, however local Equipment Services should be accessed initially o Provision of walking aids (Advice on footwear) o Management of oedematous limbs. Referral/discussion with GP to identify the appropriate management route Version: 5 Page 6 of 13

7 7.6. Late stage o Cervical collar provision o Active, assisted active, passive and /or aerobic exercise, as appropriate o Teaching breathing exercises and assisted coughing o Advising and teaching carers regarding manual handling issues o Advising regarding pressure care and provision of pressure relieving seating/mattress o Management of spasticity / prevention of contractures o Position for comfort This stage is characterised by progressive weakness and deterioration in mobility, dexterity and endurance. The person uses a wheelchair when out of bed or remains in bed and it is probable that a hoist is required for transfers. Pain can be a major problem. Physiotherapy may include: o Teaching carers to perform gentle passive stretches, heat treatment and/or massage to relieve pain and improve comfort o Liaison with GP/Palliative Care consultant regarding appropriate medication for symptom management o Advising carers regarding positioning and movement of the patient in bed o Advising and teaching carers regarding manual handling issues o Modified postural drainage to decrease retention of secretions, selfassisted or carer-assisted coughing and airway clearance techniques may need to be taught. 8. Outcome Measures 8.1. There is recognition that while objective measure may be useful during assessment, repeated measuring is probably not appropriate for this client group Objective measures that may be useful include: Version: 5 Page 7 of 13

8 Modified fatigue impact scale Berg balance scale Elderly Mobility Score Timed walk Timed Unsupported Steady Stand Ashworth scale 8.3. Goal attainment scaling is probably the most suitable outcome measure in the later stages of the disease. 9. Information and Education 9.1. People who have Motor Neurone Disease should have access to information regarding their condition. A comprehensive range of literature is available from: o MND Care Network Coordinator South West Peninsula: Telephone: / o Motor Neurone Disease Association. Telephone: MND Connect, Helpline (free): o MND Connect. Telephone: Where exercises or activities are given, this should be supported by written information People should be supplied with the name and contact number of their physiotherapist, and with other agencies referred to, where appropriate. 10. Transfer of Care, Discharge Planning and Discharge People with a diagnosis of MND should not be discharged from the physiotherapy Service People should be offered regular monitoring and review Frequency of physiotherapy input can be determined on an individual basis. If a person with MND is not given a set follow-up appointment, they should be given a contact number and be able to re-access the service at will. Version: 5 Page 8 of 13

9 10.4. When care is transferred from one physiotherapist to another, written information should accompany the transfer MND network for Torbay / Teignbridge / Totnes / Dartmouth areas hold bimonthly MDT meetings at Rowcroft. 11. References The National Service Framework for Long-term Conditions (2005). Department of Health, London MND Resource File: A patient and carer centred approach for health & social care professionals (2007). Motor Neurone Disease Association. Northampton. for updates Motor Neurone Disease The use of non-invasive ventilation in the management of Motor Neurone Disease (2010). National Institute for Health and Clinical Excellence Motor Neurone Disease: a guide for GPs and primary care teams (April 2015). Royal College of General Practitioners; MND Association. 9. Appendices Appendix 1: Pathway for MND Respiratory Support during India Gooderham s Maternity Leave Nov Jan 2017 Appendix 2: Weak Cough Pathway Version: 5 Page 9 of 13

10 Appendix 1 Pathway for MND Respiratory Support during India Gooderham s Maternity Leave Nov Jan 2017 Patient with diagnosis of MND (Ensure patient is known to Home Ventilation Team (see contact details appendix 1) Initial base-line respiratory assessment to be carried out by Home Ventilation Team within 3 months of initial diagnosis (as per weak cough pathway, appendix 2) Jon s team to send copy of initial respiratory assessment letter to In-patient respiratory Team at Torbay District General Hospital, Dr George Walker at Rowcroft Hospice and Tracey Thomas. At any point on this pathway would patient benefit from referral to Rowcroft Specialist Palliative Care Team?? Call to discuss further with the team (please see Rowcroft Community Admin Team contact details (appendix 2). On-going respiratory reviews to be offered by home ventilation team. If at any point Home Ventilation team need additional Respiratory Physiotherapy support they can contact In-patient Respiratory Physiotherapy team (see contact details appendix 2) If patient seen by Torbay Hospital Respiratory Physiotherapy Team, Physiotherapist will feed-back to Home ventilation team, Rowcroft community team (if patient known to the hospice) and Tracey Thomas (see contact details appendix 2). Patient to be provided with contact details for Home Ventilation Team in case of Out-of hours respiratory complications (please see Home Ventilation Team contact details appendix 1). If any other member of the MDT is concerned about a patient s respiratory status they should contact Home Ventilation team (see contact details appendix 1) All Healthcare Professionals involved in the care of a patient with MND should notify Tracey Thomas MND co-ordinator so that information can be shared between professionals via NHS (See appendix 1 for contact details) Version: 5 Page 10 of 13

11 Appendix 2 Contact Details for the MND MDT Home Ventilation Team Jonathan Palmer Team Leader Chest Clinic, Level 6, Derriford Hospital PL6 8DH (This number is also available during OOH for on-call service) Respiratory Physiotherapy In-patient Service, Torbay District General Hospital Nell Clotworthy and Alice Hopkins Team Leads In-patient Respiratory Physio Office, Physio Department, Torbay District General Hospital Rowcroft Community Admin Team Rowcroft Hospice, Avenue Road TQ2 5LS Tracey Thomas, MND Coordinator MND Care Network Co-ordinator S W Peninsula Dept of Neurology Level 10 Derriford Hospital, Derriford Road Plymouth PL6 8DH Office phone tracey.thomas9@nhs.net Natasha Giles, MND Network Administrator Dept of Neurology, Level 10 Derriford Hospital Derriford Road Plymouth PL6 8DH Tel: Natasha.giles@nhs.net Version: 5 Page 11 of 13

12 Appendix 2 WEAK COUGH PATHWAY (Usually applicable to patients with Neuro Muscular Disease (NMD) Box 2 Nebulised hypertonic saline -Nebusal 7% needs to be sourced via GP -Nebuliser machine available from Torbay respiratory nurses (Heart and Lung unit, Torbay hospital ) Subjectively patient is describing difficulty in clearing their own secretions. Undertake peak cough flow (PCF) Normal is >360 l/min, Auscultation, palpation and Spo2 measurements. If PCF >270L/min or unable to clear secretions If PCF 270L/min or less or unable to clear secretions despite Box 1 treatment Box 3 Cough assists and suction equipment are available from Torbay Inpatient team. If needed this team can also carry out joint assessments/ visits with notice. Contact the inpatient team on Box 1 Encourage Deep breathing exercises Optimise hydration Optimise positioning Consider use of mucolytic; Nebulised Hypertonic saline (See Box 2) or Carbocisteine / Mucodyne. Consider manual techniques, vibs, percussion etc. Consider use of Manual Assisted Cough (MAC) Ensure Box 1 achieved then consider; Contact Torbay Inpatient Respiratory Team Cough assist (See box 3) +/- MAC Consider suction equipment (See Box 3) Manual Assisted Cough (MAC) NIPPY Clearway Cough Assist Emerson Cough Assist Version: 5 Page 12 of 13

13 Amendment History Issue Status Date Reason for Change Authorised 1 Draft 17 th June 2013 Review and Update Current Guidelines 2 Draft 11 th October 2013 Minor Changes made after initial consultation 3 Draft 1st November 2013 Minor Changes made after consulting the Rehab Special interest group 4 Draft 9 th October 2015 Review and Update Current 5 Draft 24 th November 2015 Guidelines Review and Update Current Guidelines Version: 5 Page 13 of 13