Getting Comfortable with Managing Pain and Pressure Care in individuals with Motor Neuron Disease Stephanie Williams Occupational Therapist

Transcription

1 Getting Comfortable with Managing Pain and Pressure Care in individuals with Motor Neuron Disease Stephanie Williams Occupational Therapist State-wide Progressive Neurological Diseases Service Calvary Health Care Bethlehem

2 I can t get comfortable in bed Discomfort is a common issue reported by individuals with MND Pressure is generally not the main cause of discomfort in this population Discomfort is complex and requires thorough assessment and a multidisciplinary team approach Solutions are not one-size fits all Think beyond equipment for solutions

3 Pressure care Pressure can cause pain and discomfort Pressure Injury (PI)- a localised injury to the skin and/or underlying tissue usually over a bony prominence, as a result of pressure, or pressure in combination with shear and/or friction (AWMA, 2012) Prevention of pressure injuries vital for maintaining the comfort and quality of life AWMA Pan Pacific Guidelines (2012)- clinical guidelines

4 AWMA Pan Pacific Guidelines 2012

5 Pressure injuries and MND Increased risk of PI due to extrinsic factors Good intrinsic health including intact sensation and managing nutrition are protective factors that may reduce PI risk in this population (Greenwood et. al 2005) Often no significant comorbidities Continence is managed Well cared for Early access to equipment to manage comfort and pressure risk (MND equipment service) Regular contact with health professionals Regular education of carers

6 What is causing the discomfort? Immobility and inability to change position Unable to sleep in preferred/premorbid sleeping position Spasticity or low tone causing traction on joints Cramps and fasciculations Fear and anxiety Muscle wasting Temperature changes

7 Physical causes of discomfort Motor Neurone Disease Working Group, 2001

8 Psychological impact of discomfort Psychological distress can manifest as and amplify physical discomfort May be impacted by many factors Pre-morbid personality Family dynamics and relationships Coping strategies Adjustment to diagnosis Emotional state- fear, grief, anger and frustration Loss of control Anxiety Depression

9 Subjective- Assessing discomfort Pain or discomfort type (sharp, burning, aching etc.) Severity (ask to rate out of 10) Location Timing (intermittent, constant) Daily routine Premorbid pain (lower back pain etc.) Screen for pressure injury risk factors Objective- Posture Skin appearance Joint mobility and tone Observe carer transfer technique

10 Now what? Compile the information from your assessment and determine the key issues Discomfort, rather than pressure is more commonly the target of interventions Interventions and strategies to target causes of discomfort A combination of different strategies may be required Trial and error may be required- everyone is different

11 Aids and equipment options Specialised cushions and wedges Neck cushions Bean bag squishy cushions Memory foam cut to size Heel and side lying bed wedges Pressure care cushions Powered wheelchairs Tilt in space Elevating leg rests Motorised electric lift recliner chairs Single or dual motor

12 Aids and equipment options Bedsticks Sheets with satin insert panel Bed cradles Mattress overlays and pressure mattresses Memory foam overlay Mattress with Roho inserts Alternating air mattress overlay Hospital beds Should have adjustable height, head position and knee break. Trendelenberg (tilt) can be useful Spenco heel booties Transfer equipment (hoist, slide sheets)

13 Practical strategies for managing comfort Shoulder care education Positioning and gentle ranging exercises Transfer technique Optimise the individual s independence with mobility in bed or chair Passive joint movements Carer education with transfer technique and equipment Regular repositioning regime

14 Practical strategies for managing comfort Medications to target cause of discomfort Anxiety Pain Spasticity, cramps Psychological interventions and Music Therapy Call bell set up Quick release strap for NIV mask TIP: Take photos and provide written instructions of recommendations with positioning devices and techniques to ensure carry over between carers

15 Max Presented to clinic reporting inability to get comfortable in bed Background 56 year old with Lumbar onset MND Sleeping with wife in Queen bed, nil aids Independent with 4WF for mobility and transfers Assessment Identified discomfort is in back, legs and heels as Max is having more difficulty turning himself in bed to reposition Gets caught in the blankets and feels that the blankets are weighing the legs down Max wishes to remain sleeping in bed with wife- vital for his role as a husband and to maintain intimacy with his wife

16 Max Recommendations Sheet with satin panel to reduce friction when turning at hips Bedstick to assist with turning and repositioning Bed cradle to lift blankets up off legs Introduced the idea of a hospital bed with pressure mattress and companion bed for future consideration Medical staff discussed use of medications to improve comfort

17 Jenny Community nurse contacted OT to advise Jenny reports shoulder and back discomfort in bed Background 65 year old lady with bulbar onset MND Lives with her daughter Able to walk and transfer independently with no aids Endurance is limited by fatigue Uses NIV during the night Has recently had PEG inserted Jenny has lost 8kg in 6 months More difficulty with fine motor tasks due to weakness in hands

18 Jenny Assessment Sleeps on her back on a firm mattress with 2 pillows The 2 pillows put Jenny s neck in a flexed position and her shoulder blades and spine dig into the mattress Jenny revealed she is not sleeping well as she is feeling anxious about not being able to call out to her daughter for assistance while wearing the mask at night She reports lying awake at night feeling frightened about what is happening to her and with racing thoughts Jenny feels anxious about difficulty removing the NIV mask Jenny has not been able to finish her meals due to fatigue and reduced appetite

19 Recommendations Jenny Call bell with buddy button to allow Jenny to call her daughter NIV mask adapted with a quick release strap to enable easy removal Memory foam overlay to improve comfort and enable independence with bed mobility and transfers Discussed role of equipment for future including bedstick, hospital bed and specialised pressure mattresses Physiotherapist provided advice about gentle shoulder exercises and joint ranging during the day Clinical psychology to provide support with emotional adjustment Music Therapy for relaxation strategies Dietician involved in reviewing nutritional intake Neurologist provided advice about medication for anxiety and pain

20 John Reported pain in shoulders and back when sitting in electric lift recliner chair Background 72 year old man with cervical onset MND Proximal upper limb weakness with limited shoulder and elbow movement Requires assistance from family for all transfers and with mobility (4WF and manual wheelchair) Assessment Shoulder pain occurs when sitting in recliner chair, car, manual wheelchair and during transfers Observed sitting in recliner chair and noted that the armrests of the chair are too low, placing increased traction through right shoulder, leaning to one side and slumped forward Flaccid tone at shoulder and pain at joint end range

21 John Recommendations U-shaped positioning cushion to support under arms and support sitting posture in recliner, manual wheelchair and car Educated John and his family about shoulder care and ensuring that they are not pulling his arms while providing assistance Physiotherapist advised on gentle shoulder exercises Demonstrated a tilt in space powered wheelchair which to provide more postural support and comfort in the future Neurologist provided advice on suitable medications

22 Take home messages Discomfort is a common issue for people with MND There are many possible causes of discomfort Discomfort is not always caused by pressure Thorough assessment is required to identify the cause of discomfort and ensure effective management strategies A combination of repositioning, equipment and medications is often most successful MND is a moving target: Be flexible and review regularly as needs will continue to change

23 References and resources Motor Neurone Disease Association Australia and State Equipment Services Australian Wound Management Association. Pan Pacific Clinical Practice Guideline for the Prevention and Management of Pressure Injury. Cambridge Media Osborne Park, WA: CareSearch Allied Health Hub- Best Practice Model of Care- Occupational Therapy, pdf Handbook of Neurological Rehabilitation, (Greenwood et. al 2005, Taylor & Francis e-library, page 199 MND NSW, 2015, Living with motor neurone disease: day-to-day for people with MND, their family and friends Brettschneider et al. 2013, Drug therapy for pain in amyotrophic lateral sclerosis/motor neuron disease, Cochrane Neuromuscular Disease Group A Pathway for the management of pain in motor neurone disease, UK Motor Neurone Disease Networking Group,

24 Contact details Stephanie Williams Occupational Therapist State-wide Progressive Neurological Diseases Service Calvary Health Care Bethlehem Phone: (03)