The role of the physiotherapist in the management of the late effects
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The role of the physiotherapist in the management of the late effects of Polio Anne Glynn Clinical Specialist Physiotherapist MSc MCSP Neurorehabilitation Team Colchester General Hospital Essex Anne Glynn British Polio Fellowship Roadshow 2014 Plan • • • • Why me? The Colchester Service - Team Experience of working with people with Polio PPS – my understanding ▫ Management of PPS • The role of the physiotherapist ▫ Neurophysiotherapist ▫ Who is the right physiotherapist for you? ▫ What do we do? • Summary Anne Glynn British Polio Fellowship Roadshow 2014 Why me? • Interest ▫ Orthotist ▫ British polio fellowship • Evening meeting • Background ▫ ▫ ▫ ▫ Neurology over 20 years MSc Health Sciences 2005 Non-medical Prescribing 2007 Specialist interests –vestibular rehabilitation, PD, spasticity management, MND and now Polio! Anne Glynn British Polio Fellowship Roadshow 2014 The Colchester Neurorehab Team • Established 1994 • “The Neuro-Rehabilitation Team works with individuals suffering from neurological impairment to facilitate their achievement of optimal levels of functioning and quality of life”. • Work with family, carers and voluntary organisations • Referrals Anne Glynn British Polio Fellowship Roadshow 2014 Area covered by the team Anne Glynn British Polio Fellowship Roadshow 2014 Patient Numbers (recorded 24/3/2014) MS PD Stroke TBI Vertigo MND HD Other Polio 386 372 127 53 135 32 30 288 (17) Total 1423 Anne Glynn British Polio Fellowship Roadshow 2014 • Some on a course of current treatment • Others on a review system i.e. 6 month contact • All patients have direct access to team and encouraged to contact us with concerns The Neurorehab Team Consultant Neurologists Clinical Psychologist Nurse Specialists • • • – – – • Parkinson’s Disease Multiple Sclerosis Traumatic Brain Injury Secretaries Anne Glynn British Polio Fellowship Roadshow 2014 • Physiotherapists ▫ ▫ ▫ ▫ Clinical Specialist 2 Specialists 1 rotational Rehab assistant • Occupational Therapists ▫ ▫ ▫ ▫ 2 Specialist OTs 1 rotational OT Technical Instructor Rehab assistant Other services • Orthotics • Wheelchair services • Speech and language therapy • Dieticians • Respiratory Consultants • Musculo-skeletal outpatient physiotherapists • Hydrotherapy Anne Glynn British Polio Fellowship Roadshow 2014 Patient Pathway • Referrals - discussed at a weekly Tuesday team meeting ▫ Average 80 / month + 15 VR • • • • • Allocation of initial assessment Single Assessment with team feedback Joint appointments Referral to appropriate services Review/open contact Anne Glynn British Polio Fellowship Roadshow 2014 Experience of working with people with Polio • Stories • Questionnaire • Its complicated! • Support group • Compare to other neurological patients I see? ▫ Lack of progression – then progression ▫ SCI, Stroke, TBI – MS, PD, MND Anne Glynn British Polio Fellowship Roadshow 2014 Stories Anne Glynn British Polio Fellowship Roadshow 2014 Its complicated! New difficulties Lived your life Support? Medical? Social? Fulfilled Fear? Denial? Acute phase Individual muscles Skeletal Isolation Memories Rehab experience Coping? Dreams? Success Other health issues Other life traumas? Anne Glynn British Polio Fellowship Roadshow 2014 Distanced from the voices of our bodies Dr Lauro Halstead What was my role in working with people with polio? • It has been good to build up a relationship with Anne and to have an open appointment to attend for physio with someone who understands my symptoms • Better than any previous service that I have received • You helped me get my orthotics for my shoes • All around encouragement and treatment – both physical and emotional well-being. • You got me the help I needed Anne Glynn British Polio Fellowship Roadshow 2014 What was my role in working with people with polio? • I felt I was being listened to and was given advice and help with my walking as well as given exercises to do • I found your clinic a more personal programme for my needs – others in the past have been more general • Very helpful suggestions for exercises • Good luck with the road shows! Anne Glynn British Polio Fellowship Roadshow 2014 How did other members of the team help? Occupational therapy • They helped to find funding for a mobility scooter and a stair lift • I have had a number of adaptations done around my home e.g. banister rails, a step and rails at the door. • They came to my home to assess my needs Anne Glynn British Polio Fellowship Roadshow 2014 How did other members of the team help? Hydrotherapy • In my individual case it has proved very beneficial • Beneficial while in the pool but did not make a difference out of the pool • It had a bad affect on my BP over the following days Anne Glynn British Polio Fellowship Roadshow 2014 Was there a benefit in attending a joint orthotic clinic? • Nice to have Anne there to support me • I have not been, but I am sure if it is needed the team will advise me • Yes I found it helpful; Anne came up with some good ideas • I was introduced by neuro team as I had not seen an orthotist before Anne Glynn British Polio Fellowship Roadshow 2014 Would you recommend the team to other people with Polio? • • • • Definitely x2 Yes I don’t know anyone else with Polio Yes, I have often told people about how they have helped me • Most certainly, as Polio is a forgotten disease Anne Glynn British Polio Fellowship Roadshow 2014 What could we do better? • I would like to meet up with others with the same diagnosis • I would be interested in attending any local meetings • Not sure – everything was good • Nothing, you’re doing very well • I feel post polio syndrome needs to be talked about more. When I have spoken to my GP about PPS she looked rather vague and had never heard of it Anne Glynn British Polio Fellowship Roadshow 2014 PPS – My understanding • Development of new weakness, fatigue, pain and decreased function in people previously affected by polio • Diagnosis (Definition Halstead 1991) Polio Recovery and plateaux Progressive weakness (gradual or abrupt) Exclude other causes • Neurological, orthopaedic, anaemia, diabetes Respiratory, depression Treatment and rehabilitation management in PPS is not yet established – Cochrane Review 2010 Anne Glynn British Polio Fellowship Roadshow 2014 What happens? • The construction worker analogy Julie Silver 2001(Post-Polio Syndrome – A Guide for polio survivors and their families) Anne Glynn British Polio Fellowship Roadshow 2014 Management of PPS • Thorough assessment of symptoms • Other conditions – cure! /management 1. Weakness 2. Fatigue 3. Pain ▫ Joint ▫ Muscle • Falls – each year 35% of over 65 year olds fall (45% in over 80s) Anne Glynn British Polio Fellowship Roadshow 2014 Management of other conditions • • • • • • • Exclude in diagnosis of PPS Cardiovascular risk Diabetes Mood Respiratory conditions Osteoporosis Medication ▫ Side effects Anne Glynn British Polio Fellowship Roadshow 2014 1 Management of weakness • Avoid over use – preserve to conserve • Exercise ▫ Endurance . Aerobic – cardiovascular conditioning – vary and enjoy! ▫ Stretch – flexible muscles and joints (care!) ▫ Strengthen When possible – disuse, unaffected and moderately affected Not intensive . No pain Anne Glynn British Polio Fellowship Roadshow 2014 2 Management of fatigue “My muscle power and endurance are as coins in my purse: I have only so many and they will only buy so much. I must live within my means, and to do this I have to economise: what do I want to buy and how can I buy it for the least cost?” “Growing old with polio is a matter of economics: cost/ benefit analysis. How much expenditure of limited energy for how much satisfaction. Minimise the exertion; maximise the pleasure” Anne Glynn British Polio Fellowship Roadshow 2014 Hugh Gallagher 1995 Management of fatigue Energy conservation • Prioritise - Lifestyle changes • Plan - Regular rests • Pace -learning to recognise your own baseline of activity and rest (Leaflet) • Physical fitness • Sleep • Avoid excessive fatigue (Borg scale) Anne Glynn British Polio Fellowship Roadshow 2014 3 Management of Pain Joint pain • • • • Modification of activity Gentle paced exercises Postural alignment Orthoses ▫ Brace unstable joints ▫ Rest overused muscles • Equipment –wheelchair, walking stick • Medication • Electrotherapy Anne Glynn British Polio Fellowship Roadshow 2014 Muscle pain • • • • • Activity reduction Pacing Lifestyle modification Equipment Diary Physiotherapy in the management of PPS • Education and support • Aim – Keep you as independent as possible and able to maintain your optimum quality of life. • Educate the need to: • Learn to listen to your body (subjective) • Learn to pace • Encourage optimum general health – weight, diet. • Learn to accept limits – adapt to changes – accept support • Long term follow up. Anne Glynn British Polio Fellowship Roadshow 2014 Physiotherapy in the management of PPS • Reduce symptoms of PPS • Prevent worsening PPS • Exercise ▫ “Lower intensity, short duration, intermittent activity or exercise performed within subjects limits of fatigue, weakness and pain – without adverse responses” E Dean, M Dallimore 2004 • Principle based approach – not standardised treatment regime Anne Glynn British Polio Fellowship Roadshow 2014 Neurophysiotherapy vs the others! • What is a neurophysiotherapist? • Who is best for you? ▫ Team ▫ Shoulder pain? Neck pain? • Your need /their skills • You may be the 1st person with Polio and symptoms of the late effects of Polio they see ▫ Get them interested ▫ Give them the information! Anne Glynn British Polio Fellowship Roadshow 2014 Physiotherapy Assessment Subjective • History. What are your concerns? ▫ Pain? Where? When? Anything help? Aggravate? Management so far? ▫ Function? Stairs? Outdoor mobility? Dressing? • • • • ▫ Respiratory issues? Falls? ▫ Medication What is your understanding of symptoms? Belief ? Psychological Social GOALS Anne Glynn British Polio Fellowship Roadshow 2014 Physiotherapy Assessment Objective Clinical examination • Observation ▫ Posture – lying, sitting, standing, walking ▫ Previous operations – fusion • Movement ▫ Range, quality ▫ Muscle power (0- 5 ). Affected or not? Disuse or overuse • Function ▫ On off bed. • Gait . Walking aids • Palpation ▫ Joint – pain, swelling, stability Anne Glynn British Polio Fellowship Roadshow 2014 Benefits of exercise It's medically proven that people who do regular physical activity have: • up to a 35% lower risk of coronary heart disease and stroke • up to a 50% lower risk of type 2 diabetes • up to a 50% lower risk of colon cancer • up to a 20% lower risk of breast cancer • a 30% lower risk of early death • up to an 83% lower risk of osteoarthritis • up to a 68% lower risk of hip fracture • a 30% lower risk of falls (among older adults) • up to a 30% lower risk of depression • up to a 30% lower risk of dementia What counts? Moderate-intensity aerobic activity means you're working hard enough to raise your heart rate and break a sweat. One way to tell if you're working at a moderate intensity is if you can still talk but you can't sing the words to a song. Dr Nick Cavill www.nhs.uk/Livewell/fitness Anne Glynn British Polio Fellowship Roadshow 2014 Individual home exercise programme Reduce risk Risk Benefits Anne Glynn British Polio Fellowship Roadshow 2014 1.Avoid overdoing it. 2. Pace 3. Rest Link with team • Gateway to help ▫ Accept physiotherapy • Occupational therapy • Refer to specialist physiotherapy colleagues ▫ Hydrotherapy ▫ Musculo-skeletal, spinal ▫ Pain management • “Patient satisfaction with therapists is associated with degree of emotional support and understanding received”. P Ley 1988 Anne Glynn British Polio Fellowship Roadshow 2014 You can change some of it Ask for help Talk Join a group Set up a group! New difficulties Lived your life Support? Medical? Social? Fulfilled Dreams? Let go of unrealistic expectations Anne Glynn British Polio Fellowship Roadshow 2014 Acute phase Individual muscles Isolation Memories Fear? Denial? Coping? Lifestyle Pacing Rehab experience Success Other health issues Other life traumas? Relaxation LetExercise go of unrealistic Keep healthy expectations Resources • British Polio Fellowship • Lincolnshire Post-Polio network • Post Polio Syndrome – Management and Treatment in Primary Care (PP Support Group Ireland 2007) • Postpolio Syndrome J Silver, A Gawne (2004) • Post-Polio Syndrome – A Guide for Polio Survivors and Their Families J Silver (2001) • Post-polio syndrome – advice on the management of your symptoms. Information from the Lane Fox Unit Anne Glynn British Polio Fellowship Roadshow 2014 References • R S Howard (2005) Poliomyelitis and the postpolio syndrome. BMJ 330: 1314-1319 • E Farbu (2005) Post-Polio Syndrome – Diagnosis and Management. JACNR 5: 10-11 • R Bridgens, S Sturman, C Davidson (2010) Clinical Medicine 10: 213-214 • E Farbu et al(2006) EFNS guideline on diagnosis and management of post-polio syndrome. European Journal of Neurology 13:795-801 • Treatment of Postpolio Syndrome - Cochrane Review 2010 •Anne Glynn British Polio Fellowship Roadshow 2014 Summary “Find someone who will work with you and is willing to learn and help” Roller and Maynard 2002 • You are the experts – be our teachers • Thank you for the invite – I have learnt in the process • Now we all need to spread our knowledge and experience Anne Glynn British Polio Fellowship Roadshow 2014 And finally! • Thank you – my teachers /patients • The future? • My goal ▫ Support development of local support group ▫ Gain greater expertise in managing people with PPS ▫ Offer study afternoon to ACPIN East Anne Glynn British Polio Fellowship Roadshow 2014 Anne Glynn British Polio Fellowship Roadshow 2014
