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

Executive Summary

The National Review of Eating Disorder Services Implementation Group was established in August 2021 to take forward the early planning of the recommendations made by National Review of Eating Disorder Services. A working group was formed to develop the National Specification for the Care and Treatment of Eating Disorders in Scotland.

A public consultation on the draft National Specification ran between 27 October 2023 and 9 February 2024 and can be accessed here: Care and treatment of eating disorders - national specification: consultation. Across 39 questions, the consultation sought the views of individuals and stakeholders on the Specification overall, the impact of the nine Outcomes on the experiences and outcomes of people accessing eating disorder treatment, and on the proposals for implementing and monitoring the Specification. In total, 52 consultation responses were received from 12 individuals and 40 stakeholders.

Overall Specification

A high level of support for the Specification was expressed in closed questions. Most respondents agreed to some extent that the Specification will improve the experiences (89%) and outcomes (87%) of people accessing eating disorder care and treatment. Support for each of the individual Outcomes was also very high, ranging from 78% to 95%.

Respondents were asked if would be helpful to include the full Core Mental Health and Wellbeing Standards in the Specification or only provide a link to them. Three quarters (78%) of those answering favoured a link, while 22% preferred to see the full standards.

Several agreed with the need for an easy-read version of the Specification or reiterated the importance of accessibility, making a range of recommendations for how accessibility could be achieved. Other comments focused on improvements to Specification content and design.

Overarching themes

While respondents expressed support for different elements of the Specification in their open comments, concerns or considerations were frequently highlighted in responses to multiple questions. These included scepticism that the Specification would be successful, barriers to implementation, the need for more partnership working, and the importance of monitoring, evaluation, research, and regulation. Ensuring the involvement of parents, families, carers and those with lived experience in the Specification design and in care and treatment was seen as vital. Respondents repeatedly stressed that successful implementation will require significant financial investment, increased service capacity, extensive training, and detailed guidance around how the proposals would operate.

Outcome 1: Leadership and Governance

Nine in ten (90%) of those answering agreed that Outcome 1 would improve the experiences of people accessing eating disorder treatment and over three quarters (78%) agreed it would improve their outcomes.

Support for monitoring, evaluation, research, and regulation was commonly expressed in open comments. While some agreed with the Specification’s focus on leadership, others identified barriers or limitations to effective leadership, such as the lack of a national steering group or the need for greater clarity around, and more detail on, leadership and governance structures at different levels.

Outcome 2: Service Structure

Outcome 2 received one of the highest levels of total agreement within closed questions. Over 90% of those answering agreed to some extent that this would both improve the experiences of people accessing eating disorder treatment and their outcomes.

Within open comments, respondents expressed mixed views about the proposed all age or specialist services. Several identified concerns or caveats to their support, while others expressed support for this. Some others were unsure, suggesting the changes require further consultation, discussion, guidance and clarity, or identifying conditions needed for success including significant financial investment and protected staff time.

Comments on the proposed multi-disciplinary team for eating disorder services was the second most common theme. While a few agreed with the range of professionals suggested, others identified challenges including: lack of funding to enable this staff complement; the reality of small teams with a limited range of professionals especially in rural areas; insufficient dietetic, medical, or psychiatric provision; service users having to repeat themselves to a large team; and the scale of the change proposed given current silos between inpatient and outpatient services and child and adult mental health services.

Outcome 3: Access to Care

92% of those answering agreed that Outcome 3 will improve the experiences of people accessing eating disorder treatment; 82% agreed that it will improve their outcomes.

Themes regarding self-referral and early identification and intervention were most common themes within open comments. While some agreed in principle with making it easier for people to access care, respondents frequently mentioned challenges or resources required for implementation. Similarly, while there was support for the four-week time-to-treatment principle, several described this as ambitious or unrealistic or stressed that this would require substantial resourcing, staffing, workforce planning, and training.

Several were encouraged by proposals concerning the full range of eating disorders or emphasised the importance of equitable access across a range of presentations. However, respondents again predicted an increased workload or expressed concern about teams’ skills mix when delivering proposals. There were calls for increased funding, staffing, guidance, and training, if the range of presentations to be supported is widened. Specific caveats and considerations in relation to supporting those with Binge Eating Disorders and Avoidant / Restrictive Food Intake Disorder (ARFID) were also noted.

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

Outcome 4 received one of the highest levels of total agreement within closed questions. The vast majority of those answering felt this will improve the experiences of people accessing eating disorder treatment (95%) and improve their outcomes (90%).

Comments about specific co-occurring considerations and comorbidities were most prevalent. Responses most commonly focused on neurodiversity, but diabetes, obesity, mental health, musculoskeletal problems, reproductive health issues, dental concerns, dysfunctional exercise, and pregnancy were also raised. The need for services to work together to meet the needs of those with co-occurring considerations was also noted.

Outcome 5: Assessment and Medical Monitoring

90% of those answering agreed to some extent that Outcome 5 will improve the experiences of people accessing eating disorder treatment.. 82% agreed to some extent Outcome 5 will improve outcomes.

Views on medical monitoring was the most common theme in comments. A small number called for clarity around responsibility for medical monitoring or were encouraged by the Specification’s recommendation to ensure this. However, barriers to services providing medical monitoring were raised. There were calls for more detail about how these would be addressed and suggestions made about how to mitigate these.

Several commented on shared care arrangements with primary care, or the specific role of GPs within medical monitoring. Barriers to reaching shared care arrangements were highlighted. There were calls for closer links with GPs and the provision of consultation from eating disorder services, funding, time, and education for GPs to ensure recommendations can be implemented. Some also mentioned other professionals who do, or could, carry out assessment and medical monitoring, or requested greater consideration of their roles within the Specification.

Outcome 6: Transitions

92% of those who answered agreed that Outcome 6 will improve the experiences of people accessing eating disorder treatment and 87% agreed it will improve their outcomes.

Positive comments were more prevalent within open responses at Outcome 6 than for other Outcomes. Respondents described transitions as an important and achievable area for development. Most commonly, they expressed support for reducing the need for re-referral and having clear transition protocols, policies and pathways between services.

Some shared negative experiences of, or urged improvements in, transitions between child and adult services. Transition challenges and added complications within rural areas were also mentioned. There were mixed views about transitions to Further and Higher Education and retaining treatment where people move to a different area.

Outcome 7: Discharge

There were high levels of agreement that Outcome 7 will improve the experiences (92%) and outcomes (89%) of those accessing eating disorder treatment.

Within open comments, respondents most commonly noted views about discharge planning and decision-making. Some emphasised the importance of collaborating with, and considering the views of, individuals, families, and carers. Others highlighted the importance of joint working between services and coordination with partners to deliver discharge related recommendations.

Several supported a phased approach to discharge, the option to re-engage with services post discharge, and longer term support for those experiencing a long-term eating disorder. However, a few felt that more detail was required about these proposals or raised concerns including the need to address capacity within post-discharge services.

Outcome 8: Education and Training

One of the highest levels of total agreement was recorded for Outcome 8 with the vast majority (95%) agreeing to some extent that this will improve both the experiences and outcomes of people accessing eating disorder treatment.

Within open comments, respondents most frequently made suggestions about training format and content. Several also advocated for training those outwith specialist eating disorder services. Some agreed that those with lived experience be involved in devising and delivering training or advocated a greater focus on this within the Specification. Others identified those they felt should play a role, including carers. Barriers to training access, alongside ways of mitigating these, were also highlighted.

Outcome 9: Shared and Supported Decision-making

Outcome 9 also recorded one of the highest levels of agreement across the consultation. 95% of those answering agreed to some extent that it will improve the experiences of people accessing eating disorder treatment; 92% agreed it will improve their outcomes.

Respondents most commonly agreed with Outcome 9 or noted the benefits of inclusive information in facilitating shared decision-making. A few highlighted the importance of collaborative care plans and ensuring a person-centred approach to care. Caveats to shared decision-making were also outlined and a few expressed scepticism about achieving recommendations or queried how they would be adhered to.

Implementation and Measurement

Five questions asked respondents for their views on implementation and measurement of the Specification. Respondents identified adequate resourcing, training, leadership and governance, further information and guidance, clear pathways, partnership working, and staff-buy in as important implementation supports.

There were high levels of agreement (86%) that the Specification should be measured using a range of indicators. Respondents proposed questions and items for inclusion within the self-assessment, including qualitative goal-based outcomes and case studies. A small number raised concerns about, or challenges linked to, self-assessment. There were calls to consider how to approach non-compliance and to include those with lived experience and their carers within self-assessment tool design. Respondents were asked how services could be supported to reduce inequalities in the outcomes and experiences of people who use services. Some identified those more likely to experience inequitable care or urged greater consideration of the needs of underserved groups.

Conclusions

Overall, the key message was that there is widespread support for the draft National Specification, but for this to be implemented successfully it will require significant financial investment, increased service capacity, extensive training, and more guidance around how the proposals would operate in practice.