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

2. 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.

3. 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 to ; 14% re-admitted within 28days

4. 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

5. 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.

6. 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

7. 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

8. 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

9. 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

10. 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.

11. References
Defining the value of Allied Health Professionals with expertise in Multiple Sclerosis MS TRUST 2013
NHS Tariff, , 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
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