Third Sector Responses to Health Care Challenges of ‘difficult to manage diagnoses’: a case study of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

The Health and Social Care Act 2012 stipulated: clinically led commissioning; provider regulation to support innovative services; greater patient voice; Public Health England to drive improved health; greater accountability; and the removal of unnecessary bureaucracy. The Care Act 2014 (implemented in April 2015) further aimed to formulate a single, consistent national minimum eligibility threshold, establishing an entitlement to public care and support for all adults with eligible needs and their carers. The mantra for these legislative changes appears to be fairer eligibility criteria and provision of health and social care. Councils are now supposed to take on new duties of wellbeing and independence promotion and provision of information/advice to increase independent living as well as planning ahead for future needs. It is unclear however as to what impact this new entitlement benchmark will mean to individuals with high needs but diagnostically contentious diagnoses (conceptualised here as non-traditional) such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
The management of CFS/ME has been controversial, with both medical and psychiatric approaches to care being advocated within the health profession. Many people with CFS/ME have reported feeling that their symptoms and problems are either minimised or simply not accepted by health and social care professionals. In this small-scale quasi-experimental longitudinal study we used both quantitative and qualitative methods to find out what patients with CFS/ME thought about a multi-modal holistic care package including spiritual support provided by a private/charitable status hospital specialising in CFS/ME. Fifteen patients with CFS/ME were interviewed at two time points: T1 during hospital admission and T4 twelve months post hospital discharge (each patient had on average stayed in the hospital for two weeks).We found significant improvements in fatigue symptoms as well as perceived improvements in quality of life, and a probable improvement in depression for the study group 12 months post-hospital discharge. Whilst for individual participants, each of these factors had its own unique meaning shaped by their personal experiences and unique histories, with a few exceptions, the majority of research participants were able to conclude at 12 months follow up that being cared for in the hospital had been a good decision and that they benefited from it. All of the patients were funded and cared for by the third sector as a result of an inability of the current NHS to sustain their care needs. The paper ends on a call to question what will happen to similar ‘non-traditional’ patients?