Care and treatment of eating disorders - national specification: consultation

National Specification for the Care and Treatment of Eating Disorders in Scotland

This part of the document is the draft Specification.

We know that currently not everyone has the same experiences or outcomes when they access services that provide eating disorder treatment. We want the Specification to help make sure that services meet your needs whoever you are and whatever your background.

Introduction

Eating disorders are serious mental health conditions that involve abnormal eating behaviour and preoccupation with food, accompanied in most instances by prominent body weight or shape concerns (ICD-11, 2022). Eating disorders can have a significant impact on an individual’s physical health, psychological wellbeing and associated functioning. ICD-11 classification (2022) includes several eating disorder categories including Anorexia Nervosa (AN), Bulimia Nervosa (BN), Binge Eating Disorder (BED), and Other Specific Feeding and Eating Disorders (OSFED). It is estimated that around 1.25 million people in the UK have an eating disorder (Beat, 2022).

Background

The National Specification for the Care and Treatment of Eating Disorders in Scotland has been developed in response to the National Review of Eating Disorder Services (2021), with a working group forming to develop them (see Appendix 2 for membership of the group). The aim of the National Review was to provide an overview of the current system of support for people with eating disorders, and their families and carers in Scotland. This built upon a previous report by the Mental Welfare Commission for Scotland (2020) which included a mapping of national eating disorder service provision. A significant number of stakeholders contributed to the review including individuals with experience of an eating disorder, their families, and clinicians. People with living/lived experience noted that while many services provide excellent care, there are areas for development and improvement:

• it can take a long time to access care
• people can experience barriers to accessing the right treatment
• people experience a postcode lottery with variability in services across the county
• people often experience the transition between child and adolescent services and adult services as being very difficult
• there appears to be a focus on services for Anorexia Nervosa and people with other eating disorders may find it difficult to access appropriate treatment
• carers do not always feel well informed or included in treatment, especially in adult services, even though they provide significant support

National Review of Eating Disorder Services (2021)

The National Review of Eating Disorder Services (2021) identified two main issues: lack of consistency in service provision, and confusion as to whether physical health monitoring was the responsibility of General Practitioners (GPs) or eating disorder services. It was also identified that more training was needed for healthcare professionals to enable earlier detection, prompt referral, and appropriate treatment. (National Review of Eating Disorder Services, 2021). These findings were mirrored by the Mental Welfare Commission for Scotland (2020) who also noted the impact eating disorders can have on the whole family; concern about services using Body Mass Index (BMI) alone as a criterion for access to services; and inequalities in the national provision of eating disorder services.

In parallel to these national reports on eating disorder care, there have been two further prominent published guidelines that have informed the national specification for eating disorder care and treatment. The Scottish Intercollegiate Guidelines Network (SIGN) Guidelines for Eating Disorders (2022) provides recommendations based on the evidence for best practice in the management of people with eating disorders of all ages and gender groups, in any health or social care setting. The Medical Emergencies for Eating Disorders (MEED; 2022) provides comprehensive guidance on the recognition, assessment, and management of all eating disorders that people can present with as a medical emergency. Both documents are referenced throughout the Specification.

The Specification should be read alongside relevant legislation, policies, national health and well-being standards and health, and social care standards including:

• Mental Health and Wellbeing Strategy (Scottish Government, 2023) [Available from: Scotland's Mental Health and Wellbeing: Strategy (www.gov.scot)]
• National Health and Wellbeing Outcomes Framework (Scottish Government, 2015) [Available from: National health and wellbeing outcomes framework]
• Health and Social Care Standards: My support, my life. (Scottish Government, 2018) [Available from: Health and Social Care Standards: my support, my life - gov.scot (www.gov.scot)]
• Getting it Right for Every Child (GIRFEC National Practice Model) (Scottish Government, 2016) [Available from: GIRFEC - National Practice Model]
• The Promise (Independent Care Review. The Promise. 2020 [cited 2021 Nov 1]; Available from: The Promise]
• Realistic medicine, (Scottish Government 2016) [Available from: Chief Medical Officer's Annual Report 2014-15]

Implementation and Quality Assurance

The Specification supports national consistency in the delivery of eating disorder treatment. It has been developed to support local implementation by services, for example, to reflect local models of delivery and partnership working.

Each outcome within the Specification includes a section that outlines examples of evidence of achievement, and what it means for organisations and staff. These have been included to support internal quality assurance against the outcome. The Specification can also be used to inform organisational self-evaluation and improvement.

It is recognised that some elements of the Specification will involve structural changes to services. It is therefore recommended that implementation occurs over a five-year period and is supported by the National Eating Disorder Network, the development of which has been recommended by the National Review of Eating Disorder Services (2021). This will enable national learning and cross service support on the practical implementation of the Specification in a phased and planned manner.

What the Specification Covers

The Specification outlines a national baseline of eating disorder service provision for the delivery of person-centred, safe, and effective care. It focuses on an optimal model of delivery to improve access to treatment, care, and support. The Specification applies across all levels of service provision from community outpatient teams to more intensive services, including inpatient and day services and the independent sector.

Who the Specification Applies To

The Specification applies to the full developmental range of individuals who may present with eating disorders including children, young people, adults, and older adults. It also incorporates the full range of ICD-11 eating disorder presentations including AN, BN, BED, and Avoidant Restrictive Food Intake Disorder (ARFID) (ICD-11, 2022).

The Specification also includes ARFID, characterised by either: avoidance or restriction of food resulting in significant weight loss; clinically significant nutritional deficiencies; dependence on oral nutritional supplements or tube feeding; compromised physical health; or significant impairment in functioning (ICD-11, 2022). ARFID is not underpinned by a preoccupation with body weight or shape and as a result, is classified as a Feeding Disorder in ICD-11. However, it has been included in the Specification as it is recognised that the expertise of eating disorder professionals may be required to support comprehensive multi-agency treatment pathways in collaboration with a range of other organisations and services to provide the support required to meet patients’ needs. This is a position mirrored by SIGN (2022), the National Review of Eating Disorder Services (2021), and MEED (2022).

Principles and Values

The Specification is underpinned by principles and values aligned with quality healthcare provision.

• Person-centred. Providing care that is responsive to individual personal preferences, needs, and values and assuring that patient involvement/ engagement guides and informs all clinical decisions (Healthcare Quality Strategy, NHS Scotland, 2010). The Specification supports patients to uphold their rights, for example through active engagement of individuals with lived/living experience in the design and evaluation of eating disorder services. The Specification has been informed by living/lived experience feedback from the National Review of Eating Disorder Service (2021).
• Safe. Patient safety is fundamental to the delivery of eating disorder treatment and care. Safe treatment for eating disorders addresses all aspects of the illness including physical, psychological, nutritional, and functional. The service structure and underlying protocols and pathways play an essential role in the delivery of safe care.

Several patients’ deaths and other near-miss incidents have occurred following transfer between services at all levels. This includes child to adult mental health services, between two inpatient units, between medical units and specialist inpatient services, and between primary and secondary care (MEED, 2022). Similarly, transitions have been highlighted by stakeholders in the National Review of Eating Disorder Services (2021) as being particularly problematic. This led to the SIGN Guidelines for Eating Disorders (2022) to develop specific recommendations on managing transitions to supplement the existing Royal College of Psychiatrists (2017) Transition Guidelines for Patients with Eating Disorders.

An aim of the Specification has therefore been to reduce and prevent gaps in care via the provision of clear protocols and service agreements where essential transitions take place (e.g., differing levels of intensity of service provision within eating disorder services) and to change service structure to minimise unnecessary transitions where possible. The National Review of Eating Disorder Services (2021) called for the development of all age eating disorder services across Scotland, an aspiration which has been incorporated into the Specification.

• Effective. The recommendations within the Specification are underpinned by scientific knowledge and include the provision of evidence-based interventions as recommended by SIGN (2022) and MEED (2022). The use of person-reported outcomes should be implemented in parallel with the national specification, following guidance by the National Eating Disorder Network.
• Equitable. Equitable healthcare involves providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, or socio-economic status. Stakeholders in the National Review of Eating Disorder Services (2021) and the Mental Welfare Commission (2020) report described variability in the availability of services, referring to a “postcode lottery”. The Specification aims to reduce this variability while acknowledging the diverse population needs of Scotland and the need for responsive implementation aligned with local models of delivery and partnership working.
• Timely. The need for early identification and intervention has been reinforced by the SIGN Guidelines for Eating Disorders (2022) which highlighted the potential accumulation of harm that can take place during an untreated eating disorder. This is partly a consequence of many eating disorders being more likely to develop during adolescence and early adulthood, a sensitive period for brain development (Schmidt, et al., 2016) and a time when an eating disorder can have a significant impact on physical health, social functioning, and educational attainment (Allen, et al., 2020). Treatment outcomes appear to be best during the first three years of illness (Treasure et al., 2015), yet most individuals do not access treatment for their eating disorder until many years after they first develop symptoms, if they access treatment at all (Allen, et al, 2020). SIGN (2022), highlights that our current NHS systems and pathways can compound delays in accessing treatment. Therefore, this Specification will support timely access to specialist eating disorders services, reduce barriers to care, and promote a culture of proactive engagement.
• Efficient. An efficient approach to eating disorder care and treatment is aligned with early intervention due to the significant impact this can have on health care use, psychological wellbeing, and quality of life. Initial evidence from First Episode Rapid Intervention for Eating Disorders (FREED) a service model designed to give young people rapid access to evidence-based treatment for eating disorders, suggests that the proportion of FREED patients that went on to require day or inpatient admissions was lower than typical service delivery models, giving cost savings (Allen et al., 2020, Austin et al., 2022; Fukutomi et al., 2020). This is replicated by international modelling analyses that have highlighted the long-term savings from early intervention for eating disorders (Butterfly Foundation, 2014; Bode et al., 2017).

  Efficiency is also aligned with minimising duplication and reducing repetition. The ethos underpinning the Specification has been to change service structure to minimise unnecessary transitions and where possible to reduce obstacles in accessing specialist care e.g., unnecessary gatekeeping and/or multiple assessment processes leading to repetition of a patient’s story.

• Supportive relationships. The Specification recognises the impact that eating disorders can have on the support networks around an individual including friends, family, and carers and the essential supportive function that extended interpersonal networks play in supporting recovery. The Specification mirrors the SIGN Guideline (2022) recommendations for the appropriate inclusion of family and/or carers in the support of individuals with eating disorders.

Mental Health and Wellbeing Strategy

This Specification has been published in the context of the new Mental Health and Wellbeing Strategy. The Scottish Government and COSLA published its long-term vision and approach to improving the mental health and wellbeing of everyone in Scotland in June 2023. The Strategy is ambitious and describes what the Scottish Government and COSLA think a highly effective and well-functioning mental health system should look like – with the right support available, in the right place, at the right time, whenever anyone asks for help. (Scotland's Mental Health and Wellbeing: Strategy (www.gov.scot)).

Core Standards

As part of the Scottish Government’s wider work to improve mental health services and care, Core Mental Health Standards were published, which stem from the Strategy. These Standards set out clear expectations for what services will look like, whilst recognising the need for local flexibility, and how we will provide assurance of high-quality care. These Standards have been developed in line with the vision of the new Mental Health and Wellbeing Strategy: Our vision is of a Scotland, free from stigma and inequality, where everyone fulfils their right to achieve the best mental health and wellbeing possible. It is our ambition for these standards to be applicable across a broader range of mental health services. They will initially apply to Adult Secondary Services, Psychological Therapies and Interventions and services that treat those with an eating disorder.

The diagram shows the Core Mental Health Standards and their relationship to the Health and Social Care Standards, Mental Health and Wellbeing Strategy and different specifications, including eating disorders.

Mental Health and Wellbeing Strategy; Health and Social Care Standards:

Core Mental Health Standards:

• Natioanl Specification for Psychological Therapies and Interventions
• National Specification for Eating Disorder Care and Treatment in Scotland
• CAMHS Service Specification
• Children and young people - National Neurodevelopmental Specification

Glossary

This Specification, wherever possible, uses generic terminology that can be applied across all eating disorder providers and services.

Throughout the document, we refer to organisations implementing the Specification which is inclusive of NHS boards and where relevant these apply to third and independent sector too.

The term representative refers to any person, an individual experiencing care chooses to be involved in their care and support. This includes but is not limited to, next of kin, a power of attorney, carers, family, parents, or an independent advocate.

The term family and/or carers is inclusive of parents, carers, family, friends, and partners.

The term co-occurring considerations has been purposely used to acknowledge that this may be a more appropriate descriptor than comorbidity for some populations such as pregnancy, autistic individuals, etc.

The term living/lived experience refers to individuals with current or past experience of an eating disorder.

The term all age refers to the full age range, from birth through to older adults.

The term holistic assessment refers to an assessment process which takes into consideration the overall health of an individual including physical, psychological, social, spiritual needs and levels of associated risk and functioning.

The term medical monitoring is inclusive of both psychiatric and physical health monitoring.

The term multi-disciplinary is used to describe a care team involved in the support and/or treatment of individuals that is made up of a variety of professionals.