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Table 2 Support needs and priority strategies for equity in health and social care, and risk factors for increased inequity from participants' experiences of living with CFS/ME

From: Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

Priority policies and strategies from experiences of CFS/ME

Public and professional relevant knowledge

 

CFS/ME

 

Human and disability needs and rights

 

Needs-based care

 

Social inclusion and health and social equity

 

Understanding of needs of people with CFS/ME

 

Acceptance

 

Illness recognition

 

Proactive attitudes

 

↑ Supporting

 

Values and practices

Support needs for equity in health and social care

User power and control

 

Needs-based choice

 

Inclusive

 

Non-stereotyping

 

Policies and systems

 

Responsive and flexible

 

Integrated and coordinated

 

Health and social services

 

Supportive

 

Personalised

 

Mutually respectful

 

Timely

 

Continuous

 

Quality of life

 

Social inclusion

 

Wellbeing optimised

 

Purposeful living sustained

 

Illness managed

 

Social support

 

↓ Undermined

 

Illness/disease status not recognised or legitimised

Risk factors for increased inequity in CFS/ME experience

Limited psychological/physical explanation for illness

 

Age and gender stereotypes

 

Ethnicity (soc exclusion, cultural boundaries, services access, stereotypes)

 

Health and social benefits knowledge, accessibility, entitlement

 

Citizenship (postcode lottery, national insurance entititlement)