Kimberly Fisher Institute for Social and Economic Research John Stevens Institute of Neurology

1. Using the BHPS to examine the experiences of people living with neurological disability in Britain Kimberly Fisher Institute for Social and Economic Research John Stevens Institute of Neurology

2. Outline of Presentation • The significance of using the BHPS to study the experiences of people with MS and other neurological disabilities • The sub-sample of the BHPS Panel with neurological disabilities • Initial findings

3. Social Science Interest in MS and Other Neurological Disabilities • Social exclusion debates • Welfare spending debates • Political activism among neurological support organisations in the UK

4. The Value of the BHPS for Studying this Population • BHPS overcomes the difficulties sampling this population • No Comprehensive Medical Records • National Statistics Focus on Benefits Claimants • Most Surveys Not Prioritise Chronic Illnesses • The population is partly hidden • The panel component allows the study of post diagnosis transitions

5. Why Including the Hidden Element of the Population is Important • Can miss out part of the cycle of living with neurological disease • Services based on research findings do not provide adequately for the needs of the hidden element of the population • Statistics look worse than they should

6. The Neurological Sub-sample 3196 (including migrane headaches) 494 (excluding people who only report having migranes)

7. Epilepsy Stroke Vertigo Parkinsons Disease Chronic Fatigue (ME) Multiple Sclerosis Neuralgia Other conditions Number New Diagnosis 193 48 50 34 29 33 20 33 15 27 17 7 6 117 4 (Alzh) The Neurological Sub-sample

8. Definition of Newly Diagnosed At least one FULL interview where the problem was not reported before the problem is reported

9. Problems Defining the Sample • Questionnaire only directly asked about epilepsy all waves, migranes in later waves, other conditions self-reported (other information collected by an "Other – please specify" question) • No questions about when a health problem was first diagnosed/started • People over-report migranes and under-report other conditions

10. Problems Defining the Sample • Respondents did not consistently report conditions across all waves • This group has a high level of proxy interviews, telephone interviews, and missing interviews, though most come back into the panel after missing 1-3 full interviews • Present weighting rules remove a significant proportion of this group from the longitudinal sample because of the intermittent response

12. Intermittent Response No Neuro Problem Has Neuro Problem No 14197 97.4% 381 2.6% Yes 1718 94.9% 93 5.1% Total 15915 97.1% 474 2.9% Fisher's Exact Test 2-Tailed p<.000, Cramer's V .047

13. Proxy/Telephone Levels Vary • Alzheimer's 66.7% • Parkinson's Disease 24.2% • Stroke 22.0% • Other Neuro Problems 20.7% • Epilepsy 19.2% • Chronic Fatigue 18.2% • Neuralgia 14.3% • Vertigo 11.8% • MS 11.1%

14. Overall Level of Intermittent Response Whole Sample (excluding neurological cases) 10.9% Neurological Cases (excluding only migrane cases) 19.6%