1. What is happening in Neurology? Orla Hardiman MD,FRCPI, FAAN Director of Neurology Beaumont Hospital

2. What is a Neurological Condition? A condition that affects the brain, spine or muscle Can be roughly divided into 3 categories –Physically disabling –Non-Physically disabling –Loss of cognitive ability (Dementia)

3. In Health Policy, Neurological Disorders can be Used as a Model for Management of Chronic Disease Acute events with subsequent life long disability (stroke) Treatable conditions that can be “normalised” (migraine, epilepsy) Untreatable conditions that are fatal (motor neurone disease) Untreatable conditions that are progressive and associated with high burden for patient and carer (Parkinsons, Alzheimers)

4. Neurological Disability: The Brain Matters 80% of 10 commonest disabling disease are neurological In Europe, brain diseases cause a loss of 23% of years of healthy life Brain diseases account for 50% of years lived with disability 35% of the total burden of disability-adjusted life years caused by brain diseases

5. Prevalence of Neurological Conditions in Ireland Approx 500,000 (12%) suffer from a neurological disorder Stroke is one of the leading causes of death and disability Conditions are frequently undiagnosed : There is poor access to relevant specialists No official data collection has been established for neurological conditions (except CJD) No official management plan or strategy has been put in place

6. Neurological Care in Ireland Equity of Care for People with Neurological Disability Studies from Beaumont Hospital

7. Neurologists in Europe

8. Community and Outpatient Services

9. Out patient Clinics 9 weekly Neurology clinics at Beaumont 3 general 6 specialist Approximately 50 new patients and 90 return patients seen each week However….

10. Summary of Current Status 28% of patients with progressive neurological disability (Multiple Sclerosis or Motor Neurone Disease) have never or rarely seen a neurologist… Larger percentage of patients with other neurological conditions are not followed by a neurologist The waiting list for a new patient in a Neurology clinic is 2 years Private clinics have longer waiting lists than public clinics

11. Community Services The waiting list for community occupational therapy is a minimum of 9 months except in extreme cases Community based Speech and Language Therapy non- existent for adults Services are “means tested”: Require medical card for access Services not available in the private sector

12. Access to Community Physiotherapy and Occupational Therapy by patients with Multiple Sclerosis and Motor Neurone Disease

13. In Patient Services Beaumont Hospital In-Patient Audit

14. Admissions to Beaumont Neurology corrected for Regional Population

15. In Patient Admissions to Neurology at Beaumont Hospital 2003 (n=650)

16. Waiting Lists for Admission Geographic Inequity

17. Patients on waiting list compared with admissions % Elective admissions % Patients on Waiting Lists ERHA55%34% Other HBs45%66%

18. WAITING TIMES FOR PATIENTS WHO WERE ADMITTED No of Patients <1 Months >1 but <3 Months >3 but < 6 Months > 6 Months Percentage of patients who waited greater than 6 months ERHA8314 129.7% WHB140215.8% MHB611111% MWHB52000% NEHB2113436.4% NWHB1066312% SHB122000% SEHB1611418%

19. Top five “elective” admissions DiagnosisTotal number of Admissions Duration of stay Mean duration of stay Epilepsy601- 62 days12 days MS531-91 days12 days MND295- 34 days 13 days Stroke191 – 78 days 15 days Chronic inflammatory neuropathy 184- 40 days 8 days

20. Patients Waiting for Admission for longer than 6 Months

21. Multidisciplinary Clinics Beneficial Effects of Multidisciplinary Management

22. Multidisciplinary Teams Hospital based –Neurologist –Specialist nurse –Physiotherapist –Occupational therapist –Speech & language –Nutritionist –Psychologist –Social worker –Palliative care team Community based –Specialist nurse –Voluntary organisation –Public health nurse –Occupational therapist –Physiotherapist –Speech and Language –Social Services –Palliative care home team

23. Effect of a Multidisciplinary Clinic on Survival in Motor Neurone Disease Logrank p = 0.003

24. Multidisciplinary Clinics: Evidence from other Countries Better survival Fewer emergency admissions Shorter length of stay when hospitalised Better management of symptoms Improved quality of life Lower rates of carer burnout

25. Why has there been no Investment in Neurology? Reactive versus Proactive Health Policy

27. Waiting Lists Excessive reliance on unverified / inaccurate data, including waiting list data Minimal audit of waiting list management: –Equity not assessed or validated Assumption that “outcome” is associated with “procedure” (usually surgical)

28. What Needs to be Done We need to develop more sophisticated measurement tools that can capture complex conditions We need to develop methods to capture out-patient services and activities We need to audit and monitor our activity to ensure that we are capturing real need

29. What Needs to be Done (cont’d) We need to be sensitive to hidden inequities within the health services We need measurement tools that assess continuity of care

30. What Needs to Be Done? We need to invest in the delivery of Neurological Services