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

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

Social Science Interest in MS and Other Neurological Disabilities

• Social exclusion debates

• Welfare spending debates

• Political activism among neurological support organisations in the UK

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

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

The Neurological Sub-sample

3196 (including migrane headaches)

494 (excluding people who only report having migranes)

The Neurological Sub-sample

• Epilepsy• Stroke• Vertigo• Parkinsons Disease• Chronic Fatigue (ME)• Multiple Sclerosis• Neuralgia• Other conditions

Number New Diagnosis

193 485034 2933 2033 1527 177 6117 4 (Alzh)

Definition of Newly Diagnosed

At least one FULL interview where the problem was not reported before the problem is reported

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

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

Wave 1Wave 2

Wave 3Wave 4

Wave 5Wave 6

Wave 7Wave 8

whole sample

neurological problems

0.00

2.00

4.00

6.00

8.00

10.00

12.00

14.00

16.00

% giving partial interviews

Intermittent Response

No Neuro Problem

Has Neuro Problem

No 1419797.4%

3812.6%

Yes 171894.9%

935.1%

Total 1591597.1%

4742.9%

Fisher's Exact Test 2-Tailed p<.000, Cramer's V .047

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%

Overall Level of Intermittent Response

Whole Sample (excluding neurological cases) 10.9%

Neurological Cases (excluding only migrane cases) 19.6%

91 92 93 94 95 96 97 98

no neuro problem

neuro problem

0

1

2

3

4

5

6

7

8

9

10

Levels of Self Employment Aged <66

no neuro problem neuro problem

91 92 93 94 95 96 97 98

no neuro problem

neuro problem

0

10

20

30

40

50

60

70

% Employees Among Aged <66

no neuro problem neuro problem

91 92 93 94 95 96 97 98

no neuro problem

neuro problem

0

2

4

6

8

10

12

14

% Retired Aged <66

no neuro problem neuro problem