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

4. Overall specification document

This chapter presents the analysis of Q1 to Q7 in the consultation, which asked respondents for their views on the Specification overall, including its accessibility.

Among those who answered Q1, 89% agreed to some extent that the Specification will improve the experiences of people accessing eating disorder care and treatment; 20% strongly agreed and 69% agreed. A further 9% were neutral and 2% disagreed. High levels of agreement were recorded across sub-groups, with only one healthcare respondent disagreeing.

Among those answering Q2, 87% agreed to some extent that the Specification will improve the outcomes for those accessing support and treatment for an eating disorder; 13% strongly agreed and 73% agreed. While total agreement was at similarly high levels in each sub-group, respondents were more likely to agree than strongly agree.

Seven in ten (69%) of those answering Q3, agreed that the Specification successfully set out to individuals, their families and carers what they can expect when they access eating disorder treatment; 18% strongly agreed and 51% agreed. This is the lowest level of total agreement recorded across the closed questions, with 22% neither agreeing nor disagreeing and 9% disagreeing. While 80% of healthcare respondents who answered agreed, this fell to 58% of individuals (the lowest level of total agreement recorded by this group) and 50% of other organisations (the joint lowest level of total agreement recorded by this group).

Three quarters (73%) of those answering Q4 agreed that the Specification helps ensure everyone’s needs are met; 13% strongly agreed and 60% agreed. Half (50%) of other organisations agreed this was the case – the joint lowest level of total agreement recorded by this group.

There was widespread agreement among those who answered Q5 that a link to the core Mental Health Standards for Scotland is sufficient; 78% favoured this option while the remaining 22% felt it would be better to include the full standards. A clear majority of each sub-group, including 85% of healthcare respondents, felt a link was sufficient.

Just under half of respondents left a comment in Q5. Respondents who advocated for only including a link expressed concern that the Specification is already lengthy and complex or felt that incorporating the full standards would make it unwieldy, overwhelming, and negatively impact accessibility. An organisation and an individual raised that creating yet more standards in the mental health arena may create confusion for staff and people using services or lead to unintended consequences. These include complicating service commissioning arrangements and creating siloed service provision approaches -for example in data collection across different settings. Others commented that the full standards are unnecessary or would not aid the impact of the Specification.

“I find all these reports, standards and specifications… very confusing and I could not see how they work together or correspond… It is confusing to understand the difference between the Health and Social Care Standards and the Mental Health Standards. Instead, I am left feeling that it's a lot of red tape that might be harder to ensure is being followed because it's too complicated through replication in different documents. It also makes it very difficult for someone like me to… understand and know what is applicable and what is potentially redundant because it is superseded by something more recent.” – Individual

The few who supported the inclusion of the full standards felt this would be more powerful and better emphasise that the Specification aligns with them. A small number suggested including both a link and the Standards and either summarising or appending the standards. A couple highlighted that some of the links within the document are broken.

Q6. We want the Specification to be as accessible and as easy to understand as possible. Do you have any suggestions on how this could be improved? For example we are planning to develop an easy read version of this document.

Seven in ten respondents left a comment in Q6. Several agreed with the need for an easy-read version of the Specification or reiterated the importance of accessibility. Reasons for this included that such documents are often complex for lay people to understand and because an eating disorder can impact concentration and processing.

Recommendations for increasing accessibility of the Specification were the most prevalent theme outlined in Q6. A recurring theme was the importance of considering different learning styles and the needs of specific groups. These spanned: those with visual impairment, visual processing difficulties or literacy difficulties; neurodiverse people; children and young people; and those with a first language other than English. There were calls for the Specification to be made available in various languages, including British Sign Language, and through various formats and technologies including large print, Braille, screen reading software, podcasts, social media, and audio, video, and gamified versions. A few also suggested creating tailored versions for specific audiences, such as young people or a summary version for staff covering key treatment goals, performance indicators, and measurements of success.

“Perhaps different versions for patients/relatives and staff working in different contexts… Some clinicians may have limited input into ED work and want to be able to pull out the relevant information - perhaps people with living/lived experience discussing the document from their perspective, those in specialist services from theirs, those on general inpatient/paeds wards from theirs etc.” – Healthcare respondent

Several called for accessible language and content, including an FAQs document, a contents page, an executive summary, a glossary of terms, key points section summaries and removal of acronyms. Some commented on visual, graphics or design elements. For instance, they noted formatting issues with the document, advocated for visual summaries or bullet points, or requested features to enable selected reading, such as interactive links or drop-down lists. A small number also suggested ways to raise awareness of the Specification to increase accessibility. These included advertising this via support networks such as BEAT and promoting it amongst employers and educators to increase their understanding of the difficulties facing people living with an eating disorder.

A set of visual summaries (perhaps separately for each outcome) that can be shared within services would be useful.” – Eating Disorders and Behaviours Research Group, University of Edinburgh

Easy read summary version similar to what was completed with Psychological Standards and Core Mental Health Standards would be helpful.” – NHS Dumfries & Galloway Adult MH service

While one healthcare respondent commented that the Specification is easy to understand, a few felt it was inaccessible or not user-friendly. They noted it was repetitive, too long and detailed, used overly complex language, or felt the number of Outcomes could be a barrier to accessibility. One organisation felt it was particularly inaccessible to children and young people in the current format. Another commented that it is too lengthy to be of practical use in a clinical or service planning setting. In contrast, a small number expressed concern about a lack of detail or suggested additional detail is needed (see Q35 for specific suggestions here).

“I have autism [and] have had anorexia 31 years now and my mental capacity for concentration and processing information has markedly deteriorated in recent years. I found much of the language too complex, however, when it came to what it meant you could expect as an individual it was very simplified and lacking in detail and left me feeling unsatisfied.” – Individual

“It is incredibly difficult to understand, it reads like an academic article” – Individual

One healthcare respondent and See Me suggested that practitioners could support individuals to access the Standards, through discussing these together or offering an easy read walk through early in their contact with the service.

Q7. Do you have any other comments on the Specification overall?

Q7 received 38 open-text comments. Many respondents provided answers that related to individual Specification Outcomes. These have not been outlined here but have been considered within the analysis, and written up under, the relevant outcomes. In addition, the overarching theme of positive feedback on the Specification was evident in Q7. Please refer to this chapter 3 for a discussion of this theme.

Among the remaining comments, the most prevalent theme was views on Specification content. Respondents most frequently criticised or suggested improvements to the Specification design. Some felt the document is too generalised or vague and lacks sufficient detail to facilitate implementation. There were calls to include implementation plans or statutory guidance around service delivery expectations and to provide additional details, including estimates of additional workload generated by the Specification and resources needed to deliver this. An individual also requested the inclusion of a helpline number for people to seek advice where a service is not following the Specification. See Q.35 for further examples of specific detail requested.

“The document currently feels vague at times…. Is there a plan to create implementation plans with specific focuses in a similar way to the current dementia strategy process?” – Mental Health Physiotherapy, NHS Ayrshire and Arran

“Whilst there are many good evidence-based ideas within it, a more practically applicable document could include a sense of current service context and staffing composition and guidance of how services can be improved in the short term as well as long term with and without extra resourcing.” – Greater Glasgow and Clyde Adult Eating Disorder Service

A professional/academic organisation welcomed the confirmation that the Specification will sit within the context of the Core Mental Health and Wellbeing Standards and the Psychological Therapies Specification and complement other ongoing work, such as the creation of the National Care Service (NCS) and the Mental Health and Capacity Reform Programme. However, several felt the Specification was out of step with other guidelines, standards, policies, or terminology or advocated aligning or linking the Specification to these, including the:

• SIGN (Scottish Intercollegiate Guidelines Network) guidelines - a healthcare respondent commented that these currently don’t evidence older adult services, for instance.
• Mental Health and Wellbeing Strategy Delivery Plan and mental health workforce planning more generally.
• Health and Social Care Standards and the Health and Social Care Data Strategy.
• Policies relating to Children and Young People.
• The Equality Act 2010.

“This version uses terminology for protected characteristics that are different from those set out in the Equality Act 2010. The language around protected characteristics should be modified.” – Individual

“The document outlines ‘outcomes’ - should these be called ‘standards’, which is more in keeping with core Mental Health Standards and Health and Social Care Standards terminology? Using the words ‘standards’ rather than ‘specification’ would give more equity and more likelihood of being able to measure a service and service delivery against them.” – Healthcare respondent

Two health respondents expressed concern that the document is weighted towards a medical model understanding of mental health, uses psychiatric language, or prioritises psychiatric assessment, monitoring, and risks, and neglects guidance around treatment approaches. A small number felt that the Specification working group and design process lacked input from certain perspectives, such as the early years, or advocated seeking the views of specific groups. These included: Child and Adolescent Mental Health Service (CAMHS) Eating Disorder Teams, CMHTs, eating disorder clinicians from both specialist and general mental health settings, the full range of Scottish health boards, and education sector professionals. An organisation noted insufficient learning and evidence from other similar mental health standards/specifications on the workability of the approach.

A few made positive comments about the specification content, including that it draws on appropriate experience and evidence, covers a lot of ground, and is comprehensive as a gold-standard for what eating disorder services should look like.

“It has been developed by experts and leans on both the lived experience of patients, carers, and experts in this speciality as well as evidence.” – Healthcare respondent