National Review of Eating Disorder Services: terms of reference

Purpose of the Review

The purpose for this review is to provide a full picture of the current system of support that is available for those with an eating disorder, and their families and carers, in Scotland. This includes eating disorder support from primary care through to inpatient services, and the third sector and local support services.

The review will then provide Scottish Ministers and the Scottish Government with detailed recommendations on how services and the wider support system should be constructed to ensure that the right treatment and support can be provided to those with an eating disorder, and their families.

The review will ultimately be a first step in a phased programme of work to improve the outcomes for people living with an eating disorder in Scotland. A second phase of improvement work will be guided by the review’s findings and recommendations.

Scope of the Review

The scope of the review should include, but is not limited to, the following areas:

• The review should cover all eating disorder services for children, adolescents and adults, and consider the transition points between these services. This should also include inpatient provision and any private provision in Scotland. 
• The review will build on the findings of the MWC report which includes a scoping of services that are provided by the third sector, generic community support and specialist services to ensure that we understand what needs are being met.
• The review should cross-reference its findings with the findings of the MWC report, so that we have a full picture of the current system of support that is available for those with an eating disorder and their families and carers.

• Make recommendations for how specialist eating disorder services can best be provided in urban, semi-urban and rural areas. This should include how early intervention can be achieved through early referral systems in primary care, schools, third sector, etc.
• Make recommendations on the implementation of a public health approach to the prevention of eating disorders with Public Health Scotland.
• Make recommendations as to how data for eating disorders can be collated consistently across services in Scotland. This should include recommendations for a minimum data set to assess eating disorder referrals and diagnosis, referral to treatment time and outcome data.
• Make recommendations of numbers and disciplinary mix of staffing that should be provided per 100,000 population.
• Make recommendations for what age range, if any, an eating disorder service should cover. This should take into consideration the views of individuals who have had an eating disorder and their families, and be outcomes-focused.

• Make recommendations about training and education. 

The following overarching questions should be addressed:

1. What have we learnt from the COVID-19 pandemic that can inform our recommendations?
2. Are services accessible and serving the needs of people with eating disorders irrespective of stage, duration or severity of illness?
3. What support is provided in primary care and what role should primary care have in the detection and treatment of eating disorders across the range of severities?
4. What barriers are there to individuals and families accessing help and support for an eating disorder or suspected eating disorder across Scotland?
5. Does gender, sexual orientation, culture, ethnicity, religion, age or any other protected characteristic play a factor in barriers to treatment and support, and if so how can this be addressed to achieve equity of access?
6. How can early intervention be achieved through early referral systems in areas such as primary care, schools and the third sector?
7. Would the establishment of an Eating Disorders Managed Clinical Network help to address issues of inequality, public education, staff education and support the sharing of best practice? Or is there another format that would deliver this more efficiently?
8. Are services meeting the needs of people with comorbidities such as ASD, trauma, personality disorders and anxiety and depression, etc. ,and how can this be improved?
9. Are services meeting the physical health needs, comorbidities and sequalae of patients (such as obesity, diabetes, gastrointestinal, bone and endocrinological problems) across the age ranges, and how can they better ensure medically safe treatment?
10. How can we build workforce capacity by increasing the number of trainees and training opportunities for eating disorders across all disciplines?
11. How can we promote education, service development, innovation and research in eating disorders across Scotland?
12. How can we ensure that all frontline medical personnel can identify and safely manage patients with eating disorders who may present in non-specialist settings, for example in GP surgeries, school nurses, A&E, and acute medical or paediatric wards?

Engagement

Ensuring that key stakeholders, clinicians and those with lived experience are fully engaged with the review is crucial to the review providing recommendations that are realistic for all those working to improve the lives of those with eating disorders.

The review should engage with key stakeholders and networks across Scotland such as, but not limited to: the CAMHS Eating Disorder Steering Group, the Scottish Eating Disorder Interest Group, the Royal College of Psychiatrists, the Royal College of General Practitioners, the Royal College of Paediatrics and Child Health, the Royal College of Emergency Medicine, third sector organisations, diabetes and neurodevelopmental clinicians/networks , paediatrics and those with lived experience and their families.

The review will take into consideration the development of the Scottish Intercollegiate Guidelines Network (SIGN) guidelines on eating disorders that are currently being developed. These guidelines will cover referral, management of medical and mental health risks, choice of treatments and management of transitions.

Due to the time-limited nature of this review, it is unlikely that full engagement with every area in Scotland will be possible. Instead, the review may wish to consider engaging with a sample of urban, semi-urban, and rural areas.

Outputs

The Leads should provide a report which seeks to address the issues listed above.

Recommendations should be evidence-based and proportionate, with consideration given to their implementation, for example recommendations could span short, medium and long term actions for improving eating disorder support in Scotland. We expect that all recommendations are agreed with clinicians and those with lived experience to ensure that they are practical and meet their expectations.

Timescales

The Leads will present an outline report containing initial findings, issues and priorities to the Scottish Government by early 2021. The final iteration of the review should be presented to Scottish Ministers in March, to allow for the Scottish Government to publish the report before the elections in May.

The Leads of the Review will keep the Scottish Government fully informed of progress in delivering the scope and outcomes of the review as set out in this Terms of Reference and the previous Review Specification. Any revisions to the agreed scope, outcomes and timescales for delivery shall be subject to agreement with the Scottish Government and Scottish Ministers.

October 2020