National Specification for the Care and Treatment of Eating Disorders in Scotland - Consultation Analysis Report

8. Outcome 4: Supporting People with Co-occurring Considerations and Comorbidities

This chapter presents the analysis of Q17 to Q19 about Outcome 4: Co-occurring considerations and comorbidities.

The vast majority (95%) of those answering Q17 agreed that Outcome 4 will improve the experiences of people accessing eating disorder treatment; 41% strongly agreed and 54% agreed. At least nine in ten of those in each sub-group agreed to some extent.

Nine in ten (90%) of those answering Q18 agreed to some extent that Outcome 4 will improve the outcomes of people accessing eating disorder treatment; 38% strongly agreed and 51% agreed. All other organisations who answered agreed, as did 92% of healthcare respondents and 82% of individuals who answered.

Q19. Reading the “Outcome in Action”, which is intended to describe how the Outcome will be delivered, do you have any other comments about the Outcome?

Neurodivergence

Two thirds of respondents commented at Q19. Comments relating to specific co-occurring considerations and comorbidities was the most prevalent theme. Most commonly, respondents raised points concerning neurodivergence. A few individuals emphasised the importance of attending to this co-occurring consideration, explaining they had received their diagnosis of autism late in their care journey and that their needs about this had been neglected within their eating disorder treatment.

Some agreed with the Specification’s proposals to support people with autism. A few respondents appreciated the suggestion that neurodivergence considerations do not need to be formally diagnosed to be taken into account. See Me agreed with adopting recommendations by the PEACE (Pathway for Eating disorders and Autism developed from Clinical Experience) pathway to support people with a diagnosis of autism and an eating disorder.

One individual and a healthcare respondent, however, requested further exploration in the Specification of how eating disorder services will support neurodiverse people. To support the implementation of Outcome 4, there were calls for:

• Training and upskilling eating disorder teams in neurodivergence to enable them to adjust their approach to prevent barriers to access for this group. One individual called for a specialist trainer in each service, such as a psychologist trained in autism and adapted psychological approaches.
• Eating disorder services need to be able to access local specialist autism assessment and diagnostic services and extra resources to facilitate this.
• An eating disorder lead within autism services.
• Funding for infrastructure development including service premises and building design to meet the needs of neurodivergent people.
• Neurodevelopmental assessment and formulation to be considered and fully integrated into eating disorder treatment pathways given the high prevalence of neurodevelopmental needs.
• Embedded Speech and Language therapists within eating disorder teams.

A small number emphasised the importance of making appropriate adjustments to eating disorder treatment for those with autism, with Edinburgh Carers Council arguing this should be done as standard rather than an afterthought. Adjustments included:

• Dietary advice distinguishing between disordered eating choices and those driven by sensory needs and attending to the distress some people experience with food textures, colours, temperatures and flavours within care plans.
• Considering the physical environment and the impact that noisy outpatient and inpatient departments and waiting rooms can have on neurodivergent people.
• Review of whether the focus on group therapy and family-based therapy for eating disorders meets the needs of autistic people or adapting therapies to suit those with different needs rather than excluding them.
• Adapting treatment plans and styles to the unique needs of individuals.
• Supporting routines and structure and reducing change (or rooms/staffing etc) as much as possible.
• Distinguishing between stimming behaviours and acts of micro exercise.
• Accommodating self-soothing tools such as headphones or weighted blankets.

“There should be a very individualised approach: for example, it was totally unnecessary and actually distressing for me to have post-meal supervision. I didn't purge or exercise after meals and I found the time in a forced social environment of noise, having to be still and exposed to people and TV and no space very distressing. By contrast, when post-mealtime was used for planned and structured group activity or supportive feedback from the day, this was helpful…. If someone with autism requires supervision for eating or after meals or for self-harm, then it should be done with consideration to the type of environment (and) level of interaction they most find helpful.” – Individual

Diabetes

A range of points were made about diabetes. The University of Edinburgh Eating Disorders and Behaviours Research Group called for the Specification to include reference Type 2 diabetes, given this is highly relevant to eating disorders. A health professional/ organisation emphasised the importance of collaboration with adult weight management services where people with BED are aiming to lose weight to reverse Type 2 Diabetes. A few also identified a lack of clinician awareness of, and the need for educational campaigns, treatment improvements, and liaison services for, people with diabulimia, or T1DE. A professional/academic organisation welcomed the Specification proposals for joined-up services to help promote awareness of the association between Type 1 diabetes and eating disorders and the risks attached.

A healthcare respondent called for the Specification to outline where eating disorders can be managed within a secondary care diabetes and weight management setting, with integrated psychological care. Another expressed concern about the absence of local shared care arrangements in their area. They noted diabetes services do not have an integrated mental health service, leaving patients at risk of harm where an eating disorder is unidentified and untreated. There were calls for dieticians to adapt treatment and guide eating disorder teams in supporting people with a dual diagnosis of diabetes and for diabetes services to be included for upskilling in eating disorders.

“There needs to be a joined-up approach, so not only should eating disorder services consider other aspects of a person's health e.g. diabetes etc, but those specialist services need to consider the possibility of an eating disorder. For example, does the diabetic clinic consider whether a person's weight issues may be due to BED or do they just refer to a dietitian who may not pick up on these eating patterns.” – Individual

Obesity

One healthcare respondent highlighted that obesity is not mentioned at this Outcome and felt this should be included given its high prevalence rates alongside eating disorders. They also felt that the obesity tier 2/3 service specification should be referenced. One professional/academic organisation suggested that consideration be given when directing resources to the cost-effectiveness and efficacy of population-level interventions for obesity compared to individual-level interventions of BED.

Mental health

Some respondents mentioned co-occurring mental health diagnoses, requested greater clarity within the Specification around support recommendations and joint working arrangements for those living with these, or felt there should be mention of specific co-occurring diagnoses, especially personality disorder. Two respondents referenced the National Eating Disorder and Personality Disorder Integrated Care Pathway currently in development, with one highlighting that the proposal for self-referral is inconsistent with this. They also argued that the Specification must align with local Personality Disorder Integrated Care Pathways to minimise risk of harm to individuals.

There were mixed views about shared care arrangements and which services are best placed to support people with an eating disorder and a co-occurring mental health diagnosis. A few felt CMHTs were in the best position to do this or discussed the value of eating disorder services linking in with CMHTs. However, a few healthcare respondents felt joint working between services might be harmful in some instances or cautioned against the fragmentation of services. They argued that juggling treatment between services can lead to complexities and risk management challenges. There were calls for the Specification to focus more on formulation as a core principle and for clinicians to develop an overarching case conceptualisation, including the eating disorder alongside other psychological comorbidities, to guide services working together in an integrated treatment approach. An individual stressed the importance of co-occurring diagnoses not becoming a barrier to accessing treatment.

“Co-occurring diagnoses frequently include psychological issues such as PTSD [Post-traumatic stress disorder] … OCD [Obsessive-compulsive disorder] (and) 'personality disorders'... These should be treated in an integrated way by expert clinicians, rather than through multiple clinicians working on different aspects of the problem. Clinicians working in eating disorders should also have expertise in working with their areas of comorbidity.” – Healthcare respondent

Will there be shared care between ED teams and CMHTs? So often people are turned away from one service because of their other condition and end up with no support.” – Individual

Other co-occurring considerations

Small numbers called for the Specification to also consider or include supports for neuro-musculoskeletal problems secondary to eating disorders, reproductive health issues, dysfunctional exercise, and dental concerns.

“Neuro-musculoskeletal problems secondary to eating disorders. Osteoporosis, joint hypermobility spectrum disorders, functional neurological conditions, infertility, menopause, chronic pain, alcohol misuse. In individuals that are in the older adult population group being able to identify frailty vs eating disorders” – Healthcare respondent

Two professional/academic organisations mentioned pregnancy and post-natal care for those with eating disorders. One highlighted the role that GPs can play in helping mothers to access care and liaising with midwives and health visitors to support infant wellbeing. They highlighted loss of GP capacity as a barrier to this. Another raised the importance of lifestyle behaviour change interventions in managing and preventing diabetes in pregnancy and the post-natal period. They called for the inclusion of guidance around offering tiered support for this group- ranging from group work to higher intensity sessions with behaviour-change specialists.

Partnership working

The overarching theme of partnership working was evident at Outcome 4. Respondents emphasised the importance of services working together to meet the needs of those with co-occurring considerations. Additional information provided in response to Q19 included:

• The need to put more emphasis on partnership working with the third sector and carers and families at this Outcome.
• Calls for more detail in the Specification around what joint working will look like.
• Support for clear pathway development and clarity on the roles and responsibilities of each service involved-including protocols to formalise responsibilities.
• Concern that eating disorder teams may be left to lead on all aspects of treatment.
• The importance of learning from current examples of good practice in joint working and ensuring that the breadth of clinical understanding across relevant disciplines informs proposals at this Outcome.
• The benefits of a Care programme approach to assist joint working and the sharing of expertise.

Other themes

One respondent stressed that co-occurring considerations and comorbidities may need to be given less priority where people have a dangerously low body weight. However, while agreeing medical safety needed to be prioritised, an individual felt attending to other needs remains essential to avoid undermining therapeutic relationship. They called for widespread staff education about co-occurring conditions. The same individual also highlighted that there are no specialist services to meet people’s needs for some conditions.

One healthcare respondent appreciated the emphasis on the care of the whole person at Outcome 2, given that people often have more than one health need to be considered in care planning. Another requested people with co-occurring considerations and comorbidities to be fast-tracked for support.