Equity of access to specialist chronic fatigue syndrome (CFS/ME) services in England (2008–2010): a national survey and cross-sectional study

Objectives Provision of National Health Service (NHS) specialist chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) services in England has been deemed patchy and inconsistent. Our objective was to explore variation in the provision of NHS specialist CFS/ME services and to investigate whether access is related to measures of deprivation and inequality. Design Survey of all CFS/ME clinical teams in England, plus cross-sectional data from a subset of teams. Setting Secondary care. Outcome measures We used clinic activity data from CFS/ME clinical teams in England to describe provision of specialist CFS/ME services (referral, assessment and diagnosis rates per 1000 adults per year) during 2008–2011 according to Primary Care Trust (PCT) population estimates, and to investigate whether use of services was related to PCT-level measures of deprivation and inequality. We used postcode data from seven services to investigate variation in provision by deprivation. Results Clinic activity data were obtained from 93.9% (46/49) of clinical teams in England which between them received referrals from 84.9% (129/152) of PCTs. 12 PCTs, covering a population of 2.08 million adults, provided no specialist CFS/ME service. There was a six-fold variation in referral and assessment rates between services which could not be explained by PCT-level measures of deprivation and inequality. The median assessment rate in 2010 was 0.25 (IQR 0.17, 0.35) per 1000 adults per year. 91.9% (IQR 76.5%, 100.0%) of adults assessed were diagnosed with CFS/ME. Postcode data from seven clinical teams showed that assessment rates were equal across deprivation quartiles for four teams but were 40–50% lower in the most deprived compared with the most affluent areas for three teams. Conclusions Two million adults in England do not have access to a specialist CFS/ME service. In some areas which do have a specialist service, access is inequitable. This inequity may worsen with the impending fragmentation of NHS commissioning across England