Eating disorder services

Guidance for commissioners of eating disorder servicesThis guide is about commissioning comprehensive mental health services for people with eating disorders that are therapeutic and promote independence and recovery.

Download

From April 2013, NHS England began to commission ED services. These services range from Tier 4 CAMHS ED units, through to adult specialist ED services. Specialist services include inpatient care and bespoke packages of care for intensive day care services (as an alternative to admission). There is also provision for non-admitted care associated with inpatient treatment including outreach. Tier 4 CAMHS also includes outpatient provision for children and young people with complex ED. In doing this, NHS England will be guided by service specifications developed by appointed Clinical Reference Groups for CAMHS and adult services.

Clinical Commissioning Groups (CCGs) commission CAMHS for children requiring Tier 1, 2 or 3 services and multi-disciplinary adult community ED services. These community-based services will perform a ‘gate-keeping’ function for admission and may also include less intensive day-patient services.

Ten key messages for commissioners

  1. Eating disorders are severe mental illnesses with serious psychological, physical and social consequences. Anorexia nervosa (AN) has the highest mortality amongst all psychiatric disorders. People with ED commonly experience additional mental health problems, particularly depression, physical illness, difficulties in intimate relationships and the interruption of educational/occupational goals.
  2. Over 1.6 million people in the UK are estimated to be directly affected by eating disorders. This is likely to be an underestimate as we know there is a huge level of unmet need in the community. These illnesses usually begin in adolescence and young adulthood with a worrying trend towards younger children developing ED. Onset at this critical time in a young person’s life can have a devastating effect on normal development with a restriction of opportunities that can extend into adult life. The development of personal autonomy and independence can also be affected, which can have an impact on meaningful engagement with treatment and outcome.
  3. Transitions between different services are the norm for patients with ED: primary, secondary and tertiary care; medical and mental health services; child and adolescent services and adult services; family home and student abode. Robust transitional policies must be developed and training needs met to avoid the associated risks to patients.
  4. The burden of ED on carers is very high. People with ED are often ambivalent about treatment even in the face of severe illness. This places carers in a position of battling against their loved one whilst worrying that they are to blame. Caring for someone with an ED carries a high emotional and economic cost. Carers of anorexic patients have reported similar experiences in terms of the difficulties experienced to those of carers of adults with psychosis and higher levels of psychological distress.
  5. There is a critical window for intervention for people with ED. AN does not improve spontaneously and the prognosis for all ED worsens with time. Recovery is less likely if an ED has remained untreated for more than 3-5 years. Early identification and intervention with access to effective stepped care pathways is of paramount importance to improve clinical outcome and increase cost-effectiveness.
  6. Good quality comprehensive services for people with ED are not yet available in many parts of England. The majority of people with ED are therefore managed in non-specialist settings where treatment is very variable. Access to specialist treatment for all people with an ED in England should be a priority in the new commissioning landscape.
  7. New commissioning arrangements have the potential to disrupt a patient’s treatment because community services and more intensive services (daycare and inpatient) are commissioned separately. Ensuring clinical and cost-effectiveness, particularly for those with severe ED, requires access to both community and residential components in a flexible way, unhampered by funding streams. As part of this, a priority for commissioners of comprehensive ED services must be to commission integrated care pathways that support flexible and seamless patient care. NHS England and Clinical Commissioning Groups should have a commitment to work together to ensure this.
  8. Health care costs for ED in England have been estimated as £80-100m with overall economic cost likely to be more than £1.26bn per year. This highlights the importance of optimising service provision for this group of patients. Effective and well-managed care pathways will be critical to this.
  9. Stigma related to ED has far-reaching effects. Misunderstanding of these illnesses influences
    1. people who are deterred from asking for help and support through fear of being judged,
    2. carers who often feel blamed,
    3. health professionals in their treatment decision-making, and
    4. the health service and commissioners through lack of structural investment in ED services.
  10. Further research is necessary to develop optimal interventions and care pathways for people with ED. Severe and enduring or ‘treatment resistant’ cases present the highest cost (per patient). Evidence for the most effective management of these cases is sparse. In order to improve overall outcomes and cost-effectiveness, and particularly for this high cost group, ongoing investment in clinical services for research, development and innovation is a must