The needs of MS patients and what AHP’s can provide Nicola Condon Senior Physiotherapist Acute Neurology

Patient needs….? Dependant on many factors; Type of MS and its fluctuating / variability in nature influencing disability over time Experienced differently by individuals in variable personal circumstances Needs vary at different stages of disease trajectory QOL is diminished by physical, emotional and cognitive symptoms – impaired mobility, limb weakness, poor coordination, sensory problems, fatigue, depression, pain, spasticity, cognitive impairment, sexual dysfunction, bowel and bladder dysfunction, vision and hearing problems, seizures, swallowing and breathing difficulties. Patients needs can be physical, health related, psychological, financial, employment/leisure, information/knowledge about their condition.

Considerations… NICE MS Clinical Guidelines NSF introduced 2005 for long term neurological conditions – 11 quality requirements to improve the quality of care and putting patients at the centre Benchmarking study 2010, National Audit Office 2012 – Reviewed Needs and experiences of services by individuals with progressive neurological conditions (MND, MS, PD) KEY FINDINGS Person Centred / co-ordinated services – Mixed experiences; 36% single health or social care professional co-ordinating their care; 22% aware of a care plan (not up to date); 27% felt given support with self management strategies Vocational Rehabilitation – vast majority not in paid work in the last 3 years Carers – 21% received a formal carer assessment 31% increase in admissions to hospitals from 2004-2005 to 2009-2010; 14% re-admitted within 28days

AHP’s Shared AIM – ‘allow people to achieve the highest level of function and independence, through assisting people to restructure their lives, learn new skills, re-learn tasks and make significant emotional adjustments in their lives’ Prevention of secondary complications which would otherwise increase burden of care, reduce QOL and accelerate disability Work across different care settings and geographical boundaries Hospitals Primary care – in or out-patients, isolation or MDT’s Community Secondary care – in or out-patients, mental health, in isolation, MDT’s Tertiary centres – Regional Rehabilitation centres Local authorities social services

Patient needs Defining the value of Allied Health Professionals with expertise in Multiple Sclerosis MS Society Trust Nov 2013 Derived from an on-going project by Disability Action, Dorset HealthCare University NHS Foundation Trust and the Dorset Multiple Sclerosis Service, Poole Hospital NHS Foundation Trust and with their permission. Aim promoting self management and avoiding emergency or unscheduled care.

Focus on self-management – Engagement with health services Newly Diagnosed patient PHYSIOTHERAPY – Specialist assessment, Individual exercise programme, Fitness, Education OCCUPATIONAL THERAPIST – Patient centred assessment - Workplace assessments, Assist employers in job redesign, Fatigue management strategies, equipment needs DIETICIAN – Healthy eating, weight management, address bowel management EDUCATION / PATIENT INFORMATION – Information days for newly diagnosed patients, Fatigue management Course how to access services, recognise symptoms and management, reducing anxiety / fear / stress, 50% leave their jobs within a decade of diagnosis Health and social care costs approx £17,000pp diagnosed rising to £25,000 when lost employment cost are included

Focus on avoidance of acute admission - Supporting self management CRISIS – Patient falling at home ?emergency admission COMMUNITY PHYSIOTHERAPY – Rapid assessment of aids, Falls risk assessments, Re-ablement COMMUNITY OCCUPATIONAL THERAPY – Timely home assessment, provision of equipment, Liaison with Social Services SOCIAL CARE – care needs, carer support Prevent unscheduled emergency care Available on request Periodic assessment and advice = anticipatory intervention

Facilitating discharge and access to rehab services Relapse requiring acute admission PHYSIOTHERAPY – Specialist assessment and rehabilitation, Goal setting, Discharge planning Occupational Therapy – Specialist assessment and rehabilitation, Cognitive screening, Goal setting, Home or access visits, Equipment or adaptations SALT – Assessment of swallowing function / speech, recommendations ORTHOTIST – Assessment for orthotics SOCIAL SERVICES –modifications / equipment, ensure carers approach is ‘therapeutic support’ Reduced length of stay and preventing re-admission. Reducing disability through early interventions. Improving QOL Ongoing support and rehab

Complex disabilities – coordinating specialist services LOCAL COMMUNITY SERVICES EXPERT V NON-SPECIALIST REGIONAL REHABILITATION UNITS -MS CLINICS - SPASTICITY SERVICES - SPLINTING / ORTHOTICS - SPECIALIST SEATING / WHEELCHAIRS - ACT SERVICES - PSYCHOLOGY SUPPORT SOCIAL CARE PROVIDER Regular re-assessments of needs Secondary complication prevention

Challenges facing AHP services Difficult to quantify economic benefits & impact on social care costs Which Outcome measurements? Inflexibilities in the Tariff system – focus on episodic care rather than meeting needs Rising patient expectations / referrals – increased caseloads, waiting lists Crossing boundaries – communication between services, barrier Need for further research – low quality evidence Not easy to quantify economic benefits - AHP’s preventative in nature through enablers of self-care and self-management, enhancement of QOL (measurement pt satisfaction Q’s) avoid / delaying social care costs; may result in a person not needing GP / Neurologist appointment; maintain employment Challenge of measuring outcomes in a degenerative condition which also fluctuates and is variable in the way it affects individuals. Measuring success, through prolonging ability for as long as possible. Eg FES providing right equipment, specialist orthotics, individually tailored exercise Inflexibilities in the Tariff system – focus on episodic care rather than meeting needs, eg. Complexity may need lengthy assessments / treatment time Crossing boundaries – communication between services, barrier Need for further research – low quality evidence which covers mainly relapse-remitting Rising patient expectations / referrals – increased caseloads.

References Defining the value of Allied Health Professionals with expertise in Multiple Sclerosis MS TRUST 2013 NHS Tariff, 2013-2014, category 3 investigations with category 1-3 treatment or category 3 investigation with category 4 treatment Beer et al (2012) Rehabilitation interventions in multiple sclerosis: an overview Journal of Neurology 259 (9) pp. 1994-2008 Rietberg et al (2004) Exercise therapy for multiple sclerosis Cochrane Database of Systematic Reviews Issue 3 Department of Health – National Audit office, Services for people with Neurological conditions 2012 Naci et al Economic burdon of multiple sclerosis: a systematic review of the literature. PharmacoEconomics 2010;28(5):363-79 McCrone et al Multiple sclerosis in the UK;Service Use, Costs, Quality of Life and Disability. PharmacoEconomics 2008;26(10):847-60 National Service Frameworks 2005