Care and treatment of eating disorders - national specification: consultation

Outcome 4: Supporting people with Co-occurring Considerations and Comorbidities

Outcome Statement

All individuals with co-occurring considerations and physical/psychiatric comorbidities have equitable, consistent, and timely access to effective eating disorder services and ongoing treatment and support.

Rationale

Individuals with eating disorders frequently experience a high level of co-occurring considerations in addition to the physical health problems experienced because of the disordered eating symptomatology. The term co-occurring considerations has been purposely used to acknowledge that this may be a more appropriate descriptor than comorbidity for some populations including people who are pregnant or autistic.

It has been estimated that over 70% of individuals with an eating disorder experience at least one other psychiatric disorder and that this is linked with increased severity of eating disorder symptoms (Spindler and Milos, 2007). Eating problems are twice as common in people with type 1 diabetes than in people without diabetes (SIGN, 2022). Research indicates that 20-30% of individuals with AN display diagnostic features characteristic of autism (Westwood et al, 2017). Individuals who report more autistic features are more likely to present with more severe ED psychopathology (Kerr-Gaffney et al, 2019); are more likely to require inpatient or intensive day programme treatment (Stewart et al., 2017), and report poorer global outcomes post treatment (Nazar, et al., 2018; Nielsen et al., 2022).

When supporting individuals with co-occurring considerations and/or comorbidity, eating disorder services should work with individuals to deliver responsive and person-centred care. Staff should also work in partnership with other services, agencies, and the third sector to provide joint integrated care. Where possible, a lead service should be identified/nominated to coordinate care. A focus should be on continuity of care, with supported information sharing to enable shared treatment. NHS eating disorder services should ensure specialist pathways for individuals with comorbidities and/or co-occurring considerations to promote person-centred care, and treatment should be flexible to ensure that individual needs and goals are of utmost consideration.

It may be appropriate for support to be provided on a longer-term basis to ensure that individuals can maintain progress made in treatment. Clinical expertise would suggest that pathways to support people with co-occurring considerations should include the capacity to access diagnostic pathways, multi-disciplinary assessments (including sensory assessment, communication assessments, and medical assessments), and adaptations to treatment delivered by appropriately trained staff.

Outcome in Action

4.1 People with co-occurring considerations and/or comorbidity have equitable access to care, treatment, and support. In addition, there should be no delay to referral or treatment.

4.2 Organisations ensure that eating disorder services follow SIGN (2022) and MEED (2022) guidelines for the assessment and treatment of eating disorders for individuals with co-occurring considerations and/or comorbidity.

4.3 Patients with type 1 diabetes and eating disorders receive shared care from diabetic professionals and mental health specialists and appropriate physical health monitoring as recommended by SIGN (2022) and MEED (2022).

4.4 Eating disorder services have specialist pathways, that include joint working with other services, developed in partnership with people with living/lived experience, for individuals with specific considerations including:

• diabetes
• pregnancy and those in the postnatal period
• individuals with long standing eating disorder presentations
• autism and neurodivergence (whether formally diagnosed or not), and/or
• ARFID.

4.5 Organisations ensure that when joint working takes place between services, that service provision is integrated with transparent pathways and protocols, including a clear agreement on clinical responsibility and information sharing (with appropriate consent).

What does this mean for the person receiving care?

You will:

• receive a comprehensive assessment
• be supported to consider different treatments or options, including joint working with other services appropriate to your needs
• be fully involved in developing your treatment plan which will take into account your personal views and preferences, and
• be seen by people with appropriate skills, knowledge, and competencies, including staff who have specialist training aligned with your needs.

What does this mean for staff?

Staff:

• will receive appropriate training and support to effectively assess common comorbidities and co-occurring considerations as part of a holistic eating disorder assessment, and
• can understand and can access specialist pathways for individuals with common co-occurring considerations, and
• support people to access health, social care, and third sector support, and
• will receive appropriate training to develop skills in the treatment of individuals with eating disorders and comorbidities/co-occurring considerations.

What does this mean for the organisation?

Organisations:

• have clear protocols in place for joint working between services including diagnostic assessments
• ensure specialist pathways are developed in partnership with people with living/lived experience, for individuals with co-occurring considerations, and
• perform regular audits of adherence to protocols and pathways.

Practical examples of evidence of achievement (Note: this list is not exhaustive)

• Pathways (co-produced with people with lived/living experience) to support joint working to facilitate early identification and intervention, appropriate assessment, and suitably adapted and effective intervention led by trained staff.

  For example:

  • pathway for people with diabetes which integrates with diabetes services
  • pathway for autistic individuals (whether formally diagnosed or not) using best practice principles recommended by the PEACE pathway including adaptions to the clinical environment, adaptions to treatment and care, screening, and associated referral pathways for neurodevelopmental assessment if required
• Regular audit of adherence to pathways including patient experience feedback.