Quality of Life Disparities in Chronic Health Conditions: A Social Model Analysis - Visualisations

Executive Summary

The most striking finding from this comprehensive research is that ME/CFS and fibromyalgia represent the most severely impacted conditions for quality of life, with EQ-5D scores of just 0.47 - worse than multiple sclerosis, stroke, and most other chronic conditions.^[1] However, the social model of disability reveals that these disparities stem not from medical severity alone, but from profound societal barriers that systematically disable people with chronic health conditions.^[2]

The visualisations in this document are designed to be supplementary reading to the main report, here.

Key Findings at a Glance

Quality of Life Scores Across 20 Chronic Conditions

graph TD
    A[Quality of Life Measurement] --> B[Most Severely Impacted]
    A --> C[Moderately Impacted]
    A --> D[Less Impacted]
    
    B --> B1[ME/CFS: 0.47]
    B --> B2[Fibromyalgia: 0.47-0.72]
    B --> B3[Spinal Trauma Pre-Surgery: 0.36]
    
    C --> C1[Multiple Sclerosis: 0.59-0.74]
    C --> C2[Rheumatoid Arthritis: 0.58-0.71]
    C --> C3[Depression: 0.63-0.72]
    C --> C4[COPD: 0.67-0.73]
    
    D --> D1[Type 1 Diabetes: 0.90]
    D --> D2[Type 2 Diabetes: 0.85]
    D --> D3[HIV with Treatment: 0.73-0.84]
    D --> D4[Epilepsy Well-Controlled: 0.85]
    
    style B1 fill:#ff6b6b
    style B2 fill:#ff6b6b
    style B3 fill:#ff6b6b
    style C1 fill:#ffa94d
    style C2 fill:#ffa94d
    style C3 fill:#ffa94d
    style D1 fill:#51cf66
    style D2 fill:#51cf66

Comprehensive Quality of Life Data Table

Note: Scores are population averages from UK and international studies. EQ-5D: 1.0 = perfect health, 0 = death equivalent. SF-36: 100 = best possible health.

The Social Model Framework

graph LR
    A[Medical Condition] --> B{Societal Response}
    B --> C[Enabling Response]
    B --> D[Disabling Response]
    
    C --> E[Accessible Design]
    C --> F[Flexible Work]
    C --> G[Timely Healthcare]
    C --> H[Social Support]
    C --> I[High QoL]
    
    D --> J[Physical Barriers]
    D --> K[Rigid Employment]
    D --> L[Healthcare Delays]
    D --> M[Stigma/Disbelief]
    D --> N[Low QoL]
    
    style I fill:#51cf66
    style N fill:#ff6b6b

Invisible vs Visible Disabilities: Quality of Life Comparison

pie title "Employment Discrimination by Disability Type"
    "Invisible - Job Offer Withdrawn" : 23
    "Visible - Job Offer Withdrawn" : 17
    "Invisible - No Disclosure" : 35
    "Visible - No Disclosure" : 25

Key Differences in Experience

Healthcare System Barriers

gantt
    title NHS Waiting Times Evolution (Weeks)
    dateFormat YYYY-MM
    section Specialist Care
    2019 Average (7.5 weeks)    :2019-01, 7w
    2022 Average (10.2 weeks)   :2022-01, 10w
    2025 Average (13.4 weeks)   :2025-01, 13w
    section ME/CFS Services
    Typical Wait                 :2024-01, 26w
    section ADHD Assessment
    Typical Wait                 :2024-01, 52w

Geographic Disparities Within UK

graph LR
    A[UK Health Disparities] --> B[England]
    A --> C[Scotland]
    A --> D[Wales]
    A --> E[Northern Ireland]
    
    B --> B1[18.6 year gap in healthy life expectancy]
    B --> B2[North-South divide prominent]
    
    C --> C1[Highest chronic disease burden]
    C --> C2[Drug deaths: 192.6 per 1M]
    
    D --> D1[Highest disability prevalence: 28%]
    D --> D2[Rural access challenges]
    
    E --> E1[Limited specialist services]
    E --> E2[Cross-border care issues]
    
    style C1 fill:#ff6b6b
    style D1 fill:#ff6b6b

Employment and Financial Impact

graph LR
    A[Disability Employment Gap: 28%] --> B[Contributing Factors]
    B --> C[Employer Attitudes]
    B --> D[System Barriers]
    B --> E[Individual Impact]
    
    C --> C1[19% admit bias]
    C --> C2[66% cite cost concerns]
    C --> C3[73% lack awareness]
    
    D --> D1[Inflexible hours]
    D --> D2[Inaccessible workplaces]
    D --> D3[Benefits cliff edge]
    
    E --> E1[£1,010-1,122 extra costs/month]
    E --> E2[Lower lifetime earnings]
    E --> E3[Poverty risk doubled]

Financial Burden Breakdown

Source: Scope disability price tag research^[8]

Rising Rates in Young Adults (2013-2023)

Patient Journey Mapping

journey
    title Patient Experience Journey with ME/CFS
    section Early Symptoms
      Initial symptoms: 3: Patient
      Seek GP help: 2: Patient
      Dismissed as stress: 1: Patient, GP
    section Diagnostic Phase
      Multiple GP visits: 1: Patient
      Referred to specialists: 2: Patient
      Years of testing: 2: Patient
      Finally diagnosed: 4: Patient, Specialist
    section Living with Condition
      Benefits assessment: 1: Patient
      Employment struggles: 2: Patient
      Find peer support: 5: Patient, Peers
      Advocacy involvement: 4: Patient

Systemic Barriers Analysis

mindmap
  root((Systemic Barriers))
    Healthcare
      Long waiting times
      Geographic inequity
      Lack of specialist services
      Diagnostic delays
      Treatment gaps
    Employment
      Discrimination
      Inflexible working
      Inaccessible workplaces
      Lack of adjustments
      Benefits trap
    Social
      Stigma
      Disbelief
      Isolation
      Lack of understanding
      "Inspiration porn"
    Environmental
      Physical barriers
      Transport issues
      Housing inadequacy
      Digital exclusion
      Cost barriers
    Administrative
      Benefits system
      Assessment trauma
      Bureaucracy
      Eligibility criteria
      Appeal processes

Sources: ^{[9] [10] [11] [12]}

International Comparisons

graph LR
    A[Specialist Care Wait Times - 1+ Month] --> B[Best Performers]
    A --> C[Middle Performers]
    A --> D[Worst Performers]
    
    B --> B1[Switzerland: 23%]
    B --> B2[Netherlands: 28%]
    B --> B3[Germany: 32%]
    
    C --> C1[UK: 48%]
    C --> C2[France: 51%]
    C --> C3[Australia: 54%]
    
    D --> D1[Canada: 61%]
    D --> D2[Norway: 59%]
    D --> D3[Sweden: 55%]
    
    style B1 fill:#51cf66
    style B2 fill:#51cf66
    style C1 fill:#ffa94d
    style D1 fill:#ff6b6b

Evidence-Based Solutions Framework

graph LR
    A[Quality of Life Improvements] --> B[System Level Changes]
    A --> C[Service Level Changes]
    A --> D[Individual Support]
    
    B --> B1[Universal Design]
    B --> B2[Anti-discrimination Laws]
    B --> B3[Flexible Working Rights]
    B --> B4[Benefits Reform]
    
    C --> C1[Reduced Wait Times]
    C --> C2[Specialist Services]
    C --> C3[Care Coordination]
    C --> C4[Peer Support Programs]
    
    D --> D1[Personalized Care]
    D --> D2[Employment Support]
    D --> D3[Financial Assistance]
    D --> D4[Advocacy Services]
    
    B1 --> E[10:1 ROI on Investment]
    C4 --> F[75% Report Reduced Isolation]
    D2 --> G[54% Return to Work]
    
    style E fill:#51cf66
    style F fill:#51cf66
    style G fill:#51cf66

Recommendations Priority Matrix

quadrantChart
    title Impact vs Implementation Difficulty
    x-axis Low Implementation Difficulty --> High Implementation Difficulty
    y-axis Low Impact --> High Impact
    quadrant-1 High Priority Quick Wins
    quadrant-2 Strategic Priorities
    quadrant-3 Low Priority
    quadrant-4 Future Considerations
    
    "Disability Awareness Training": [0.3, 0.8]
    "Flexible Working": [0.2, 0.7]
    "Benefits Reform": [0.8, 0.9]
    "Universal Design": [0.7, 0.9]
    "Peer Support Programs": [0.3, 0.6]
    "Reduced Wait Times": [0.6, 0.8]
    "Specialist Services": [0.7, 0.7]
    "Digital Accessibility": [0.4, 0.5]
    "Transport Access": [0.8, 0.6]
    "Employment Support": [0.5, 0.7]

Cost-Benefit Analysis of Interventions

Energy Limiting Conditions Framework

graph TD
    A[Energy Limiting Conditions] --> B[Recognition Challenge]
    B --> C[Traditional Disability Models Fail]
    C --> D[New Framework Needed]
    
    D --> E[Energy Impairment Recognition]
    D --> F[Fluctuating Condition Support]
    D --> G[Flexible Assessment]
    
    E --> H[Policy Change]
    F --> I[Service Adaptation]
    G --> J[Benefits Reform]
    
    H --> K[Better Outcomes]
    I --> K
    J --> K
    
    style A fill:#ff6b6b
    style K fill:#51cf66

Energy Management Strategies

Societal Attitude Changes Required

timeline
    title Evolution Toward Disability Inclusion
    
    Medical Model Era : Disability as individual deficit
                      : Focus on cure/fix
                      : Segregation common
    
    Transition Period : Recognition of barriers
                     : Disability rights movement
                     : Legislative changes
    
    Social Model Adoption : Barriers create disability
                         : Society must adapt
                         : Inclusion standard
    
    Future Vision : Universal design norm
                  : Energy impairment recognized
                  : Full participation achieved

Key Stakeholder Actions

Government Policy

1. Immediate Actions

   • Mandate disability pay gap reporting
   • Strengthen enforcement of Equality Act
   • Fund specialist ME/CFS and fibromyalgia services
   • Reform Personal Independence Payment assessments

2. Medium-term Actions

   • Implement universal design standards
   • Expand Access to Work scheme
   • Reduce NHS waiting times to 6 weeks
   • Establish chronic illness commissioners

3. Long-term Actions

   • Transform benefits system to support not police
   • Achieve step-free access to all public transport
   • Eliminate disability employment gap
   • Ensure specialist services within 30 minutes travel

Healthcare System

1. Clinical Practice

   • Implement 2021 NICE guidelines for ME/CFS^[14]
   • Develop fibromyalgia pathways
   • Train all GPs in chronic illness management
   • Establish multidisciplinary teams

2. Service Design

   • Create one-stop diagnostic centres
   • Implement shared care protocols
   • Develop digital health solutions
   • Expand social prescribing

Employers

1. Workplace Culture

   • Mandatory disability awareness training
   • Flexible working as default
   • Job carving and role redesign
   • Peer support networks

2. Practical Support

   • Workplace needs assessments
   • Reasonable adjustments budget
   • Phased return programmes
   • Energy management policies

Monitoring and Evaluation Framework

graph LR
    A[Baseline Metrics] --> B[Interventions]
    B --> C[3-Month Review]
    C --> D[6-Month Review]
    D --> E[Annual Assessment]
    E --> F[Policy Adjustment]
    F --> B
    
    C --> G[Process Measures]
    D --> H[Outcome Measures]
    E --> I[Impact Measures]
    
    G --> G1[Wait times]
    G --> G2[Service access]
    
    H --> H1[QoL scores]
    H --> H2[Employment rates]
    
    I --> I1[Disability poverty]
    I --> I2[Social participation]

Research Gaps and Future Directions

References

Report compiled: August 2025
Data sources: NHS England, Office for National Statistics, patient advocacy organisations, peer-reviewed research
Methodology: Systematic review of quality of life measures, patient experience research, and social model analysis