This study investigated the expressed needs for health and social care of CFS/ME of people from varied social backgrounds, including those from ethnic minorities, and the challenges posed to health care professionals in providing appropriate and equitable care for this condition.
Access is linked to, and often constrained by official recognition of health conditions. Where, as with CFS/ME, these are difficult to diagnose and to recognise as genuine illnesses, inequalities of access arise to health and to health-relevant social care.
People with CFS/ME in this study highlighted the complexity of their illness, its impact on well being and the intensity of their consequent needs to regain control over their lives. For health services to respond more equitably to these needs, they should provide earlier diagnosis, more holistic health-and social care management, and more coordinated, pro-active comprehensive support across services and support networks. These are vital to maintain social inclusion, secure practical support to manage life and to decrease the impact on carers and finances. Well-being was seen to depend on needs-based, personalised, provision which could acknowledge the expertise of people living with CFS/ME.
Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support.
Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed.
