The role of the physiotherapist in the management of the late effects of Polio

1. 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

2. 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

3. 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!

4. 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

5. Area covered by the team Anne Glynn British Polio Fellowship Roadshow 2014

6. Patient Numbers(recorded 24/3/2014) • 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 Total 1423 Anne Glynn British Polio Fellowship Roadshow 2014

7. Anne Glynn British Polio Fellowship Roadshow 2014 The Neurorehab Team • Consultant Neurologists • Clinical Psychologist • Nurse Specialists • Parkinson’s Disease • Multiple Sclerosis • Traumatic Brain Injury • Secretaries • Physiotherapists • Clinical Specialist • 2 Specialists • 1 rotational • Rehab assistant • Occupational Therapists • 2 Specialist OTs • 1 rotational OT • Technical Instructor • Rehab assistant

8. Anne Glynn British Polio Fellowship Roadshow 2014 Other services • Orthotics • Wheelchair services • Speech and language therapy • Dieticians • Respiratory Consultants • Musculo-skeletal out-patient physiotherapists • Hydrotherapy

9. 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 Patient Pathway Anne Glynn British Polio Fellowship Roadshow 2014

10. 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

11. Anne Glynn British Polio Fellowship Roadshow 2014 Stories

12. Anne Glynn British Polio Fellowship Roadshow 2014 Its complicated! New difficulties Lived your life Fear? Support? Medical? Social? Individual muscles Skeletal Isolation Memories Rehab experience Denial? Acute phase Coping? Fulfilled Dreams? Success Distanced from the voices of our bodies Dr Lauro Halstead Other health issues Other life traumas?

13. Anne Glynn British Polio Fellowship Roadshow 2014 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

14. 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!

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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)

22. Anne Glynn British Polio Fellowship Roadshow 2014 Management of PPS • Thorough assessment of symptoms • Other conditions – cure! /management • Weakness • Fatigue • Pain • Joint • Muscle • Falls – each year 35% of over 65 year olds fall (45% in over 80s)

23. 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

24. 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

25. 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” Hugh Gallagher 1995

26. Anne Glynn British Polio Fellowship Roadshow 2014 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)

27. Anne Glynn British Polio Fellowship Roadshow 2014 3 Management of Pain Joint pain Muscle pain • Modification of activity • Gentle paced exercises • Postural alignment • Orthoses • Brace unstable joints • Rest overused muscles • Equipment –wheelchair, walking stick • Medication • Electrotherapy • Activity reduction • Pacing • Lifestyle modification • Equipment • Diary

28. Anne Glynn British Polio Fellowship Roadshow 2014 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.

29. 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

30. Anne Glynn British Polio Fellowship Roadshow 2014 Neurophysiotherapyvs 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!

31. Anne Glynn British Polio Fellowship Roadshow 2014 Physiotherapy AssessmentSubjective • 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

32. Anne Glynn British Polio Fellowship Roadshow 2014 Physiotherapy AssessmentObjective 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

33. 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 Cavillwww.nhs.uk/Livewell/fitness

34. Anne Glynn British Polio Fellowship Roadshow 2014 Individual home exercise programme Reduce risk 1.Avoid over-doing it. 2. Pace 3. Rest

35. Anne Glynn British Polio Fellowship Roadshow 2014 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

36. Anne Glynn British Polio Fellowship Roadshow 2014 You can change some of it Talk Join a group Set up a group! Ask for help New difficulties Lived your life Fear? Support? Medical? Social? Individual muscles Isolation Memories Rehab experience • Denial? Acute phase Lifestyle Pacing Coping? Fulfilled Dreams? Success Relaxation Exercise Keep healthy Let go of unrealistic expectations Let go of unrealistic expectations Other health issues Other life traumas?

37. Anne Glynn British Polio Fellowship Roadshow 2014 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

38. 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

39. 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

40. 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

41. Anne Glynn British Polio Fellowship Roadshow 2014