National Review of Eating Disorder Services: report and recommendations

Clinical Aspects

Eating disorders include anorexia nervosa (AN), bulimia nervosa (BN), avoidant restrictive food intake disorder (ARFID) and binge eating disorders (BED), and variants which are classified under other specified feeding or eating disorders, and Feeding or Eating Disorders, Unspecified (ICD-11 classification) (10). They are mental disorders with serious medical consequences as well as risks of suicide. Eating disorders have the highest mortality of all mental disorders.

There have been recent advances in treatments as well as changes and expansions of diagnostic categories for eating disorders. There is a trend towards inclusive services for treatment of all people with eating disorders, regardless of age and severity, with the development of all age services and early intervention approaches.

Eating disorders typically develop in early to mid-adolescence but can emerge at any age (7). There can be long periods of time before people seek or receive help and half of all first presentations are to adult (18 years and over) services. The prevalence of anorexia nervosa in the general population is approximately 1% among women and 0.5% among men. There has been a significant increase in the annual incidence in 10 to 14 year olds in the last 7 years. It is reported that half of those who meet diagnostic criteria in the community do not access treatment. Bulimia nervosa is reported to have prevalence of about 2%, and binge eating disorders up to 4%. The population prevalence of ARFID is not known, largely because it is a relatively new diagnosis and still not well known. The overall lifetime prevalence of eating disorders is estimated to be 8.6% for females and 4.07% for males. Changes in diagnostic categories and criteria affect estimates of prevalence rates but prevalence has been increasing over time. The overall one-year prevalence is estimated to be 1.66% (2.62% for females and 0.67% for males) (11–14).

Data from the 2019 NHS-England health survey reported that 16% of people over the age of 16 screened positive for a possible eating disorder (15). This is up by 277% over the preceding 12 years. This included 4% of people who reported that their feelings about food interfered with their ability to work, meet personal responsibilities or enjoy a social life. Eating disorders have significant impacts on functioning. These figures are likely to be an underestimate due to stigma and the fact that eating disorders can be seen by the person as part of themselves and not an illness so go unrecognised even by people themselves who have them. We do not have equivalent data from Scotland but there is no reason to believed that the data would be any different. (Note that Improved data collection/population audit is urgently needed and included in the recommendations, see Recommendation 3).

The costs of eating disorders both to society and to the NHS are very high. In the Global Burden of Disease Study, of 306 physical and mental disorders, anorexia nervosa and bulimia nervosa combined ranked as the 12th leading cause of disability-adjusted life years (DALYs) in females aged 15–19 years in high-income countries, responsible for 2.2% of all DALYs (16). In Wales, individuals with eating disorders within a population database case cohort had total hospital admission costs of £17,254,751 per 1000 individuals over 20 years (17,18). Yearly hospitalisation costs of adult specialist inpatient eating disorder treatment are £2 million in Wales. The cost of GP contacts in Wales over 27 years was £37,689,894 per 1000 individuals for the eating disorder cohort compared to £17,069,401 per 1000 individuals for patients in a control group (19). NHS costs of eating disorders in Scotland have not been calculated.

In Scotland, the number of patients admitted with an eating disorder has increased from 434 in 2013 to 556 in 2018, an increase of 28% in the 5-year period. We do not yet have full data for changes in admission rates during the pandemic, however, in-patient colleagues report an increased number of referrals, and a significant increase in the complexity and severity of illness in people being referred for in-patient treatment. The two regional adolescent psychiatric units able to provide data report a combined 161% increase in eating disorder admissions between 2019 and 2020 (26 in 2019, 68 in 2020).

Hospital admissions for eating disorders in England have increased from 4,849 in 2007/2008 to19,116 in 2018/19, an almost four-fold increase in demand, with no increased investment in specialist eating disorder in-patient units (20). The number of children and young people admitted with anorexia nervosa has doubled in the same period in England, but this was not reflected, at least prior to the pandemic in Scotland due to good access to appropriate Family Based Therapy (anecdotal evidence). [Awaiting data from ISD]

Eating disorders have the highest death rate among all mental disorders affecting young people and adults of working age (21). The rate of suicide is 23 times higher than in the general population. There is no system in place in the UK to correctly report these deaths, which can be due to both medical and psychiatric consequences of eating disorders. In Wales 6% of patients of all ages diagnosed by their GPs as having eating disorders had died within 16 years of diagnosis, a rate that was significantly higher than matched controls particularly for anorexia nervosa and also bulimia nervosa.

In 2017, the Parliamentary and Health Service Ombudsman (PHSO) report "Ignoring the alarms: How NHS Eating disorder services are failing patients" (22) made a number of recommendations following their review of the care and treatment of Averil Hart who died in 2012. The recommendations included reviewing medical education, improving the workforce, ensuring the parity of funding of services across the age range, and strengthening coordination of care for people with eating disorders. The Cambridgeshire assistant coroner has recently overseen 5 inquests into the deaths of people with anorexia nervosa, including Averil Hart (23,24). He highlighted a number of failings, and noted that in each case, there was an absence of formally commissioned provision for monitoring patients with anorexia nervosa. The issues highlighted in these reports are equally applicable to Scotland and must be taken into account to improve the safe management of people with eating disorders and prevent further avoidable deaths.

The coroner noted, "GP practices are trying to wrestle with one of the most challenging combinations of physical and mental ill health and are doing so, in my view, often with one hand tied behind their backs. It is that lack of a formal commissioned monitoring service for this cohort of mental health sufferers that causes and contributes to the miscommunication between primary and secondary care."