Close to Collapse: An interim report on access to social care and advocacy for people with M.E./CFS

Myalgic Encephalomyelitis (M.E./CFS) is associated with very poor Health Related Quality of Life, However, little is known about care needs or provision among this patient community. 850 people with M.E./CFS (PWME) in the UK responded to an online survey, disseminated by Action for ME, about their difficulties with daily living tasks within the eligibility framework for statutory care services, as well as their experiences of accessing Adult Social Care. Results: 97% of respondents had daily living challenges consistent with statutory care eligibility defined under the UK Care Act 2014. Only 6% were in receipt of these services. Barriers to accessing appropriate domiciliary care included poor signposting, communication challenges caused by cognitive dysfunction, inaccessible assessment processes, as well as poor understanding and stigma towards M.E./CFS among social care professionals. Services offered under a ‘reablement’ framework were inappropriate and damaging to health. Appropriate domiciliary care services enable health management and support social networks among PWME. Conclusions: Adult Social Care services across the UK are failing PWME. Training on ME/CFS should be provided for social care professionals. Independent advocacy services may be required by PWME to facilitate engagement in assessment and care planning.