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

3. Overarching themes

While some consultation questions asked respondents to reflect on the Specification as a whole, most questions focused on individual Outcomes or specific proposals. However, some themes were evident in response to multiple questions. To avoid repetition, this chapter outlines these prevalent overarching themes. Where respondents elaborated on one of these themes concerning a specific Outcome, that detail has been presented under the relevant question.

Positive feedback on the Specification

Respondents typically expressed high levels of support for the Specification and its’ Outcomes in the closed consultation questions. This was echoed at most open questions, where general supportive comments were made. This was most frequently noted in Q7 (comments on the Specification overall) and Outcome 6 (Transitions). Participants welcomed and expressed general agreement with the Specification's suggestions, aims, intentions, and outcomes in these comments. They felt the Specification outlined standards that care, and treatment should seek to achieve or focus on, stated that these were helpful or sorely needed, or said they could, if implemented, improve service quality, or the experiences of services and outcomes for individuals.

“All the outcomes are excellent and would be great if achieved.” – Individual

“We are very supportive of this specification… People who are affected by eating disorders deserve this quality of care.” – Eating Disorders and Behaviours Research Group, University of Edinburgh

“The Strategic Review is a timely document which outlines the high standard of care patients, relatives and staff should expect.” – Healthcare respondent

One individual, who described challenging past experiences with services, expressed mixed feelings on seeing the proposals, reflecting that it was unfortunate that their younger self could not benefit from them. They described the Specification as demonstrating a significant change in understanding and recognition of what is needed.

Scepticism the Specification/Outcomes can be achieved

Many, however, caveated their support within open comments, most commonly at Q7 (comments on the Specification overall) and Outcome 1 (Leadership and Governance). They described the Specification as aspirational, idealistic, unsustainable, lacking in detail about implementation, queried how these could be enforced, or expressed doubt that these can be achieved within the current social, financial, and political climates of increased referrals and inadequate funding and service capacity. A small number expressed concern that the Specification would raise the expectations of staff and people who use services, without providing resources to meet these expectations.

“We consulted with six carers and whilst they recognised this Specification is aspirational, their universal view is that the gap between some current services and the Specification is so huge there was scepticism as to how it could be achieved.” – Edinburgh Carers Council

“The National Specification (sets out an) idealised eating disorder service with no capacity issues or limitations. This would improve everyone’s experience - both those using the service and those providing it. But it is so far from the reality of service experience, it’s difficult to comment on suggested changes that do not outline how (these) would be implemented or resourced… Improved access to services, combined with a wider service remit, combined with more flexibility re discharge, and a lighter touch monitoring service after treatment is not likely to be resourced and is therefore not practical.” – Greater Glasgow and Clyde Adult Eating Disorder Service.”

Challenges with recruitment and retention of staff - including psychiatrists, General Practitioners (GPs), nurses, and physiotherapists - were also highlighted, which a healthcare respondent noted have been exacerbated by the COVID-19 pandemic. Staff shortages were flagged as a barrier to meeting current demand, ensuring patient safety, protecting staff wellbeing, as well as the ability to focus on service evaluation and redesign as proposed within the Specification.

“In particular we need to think about retention of staff. This is an area whereby staff are already under enormous strain and managing high risk - often with minimal recognition by the wider services of what this involves and the enormous toll that this takes on staff members. Most services are not currently adequately staffed to meet targets without placing current staff under additional strain.” – Healthcare professional / organisation

Barriers to implementation

In addition to inadequate funding and workforce capacity, further barriers to implementation identified by participants included: limited space and accommodation, insufficient training, communication difficulties, staff attitudes and reluctance to change. Barriers to implementation were most frequently raised by participants at Outcome 2 (Service structure) and Outcome 5 (Assessment and medical monitoring).

“I can see that lessons have been learnt but when it comes to implementing best practice there will be many challenges of money, resources, and communication as well as human nature's reluctance to be open and transparent when failure and mistakes happen and fear to call out this in others.” – Individual

The Scottish Physiotherapists in Mental Health and UK Physiotherapy Network Group expressed concern about the current inequity of service provision across Scotland. They highlighted that different health boards offer different services, not all of which have day services, specialist inpatient provision, or consultant psychiatrists.

The challenges and barriers facing small and rural areas were highlighted by several. These included: recruitment difficulties; smaller and more limited access to a multi-disciplinary team (MDT) workforce and expertise; lack of accommodation and equipment; reduced, inadequate and inequitable service provision; long travel distances to access care and the associated financial implications of this; unreliable public transport; the challenges of outreach over large geographical areas; poor digital connectivity for digital technologies and self-help materials; and lack of capacity to free up staff to attend training. The Scottish Women’s Convention highlighted a greater reliance on charities for mental health support in rural locations, where public services have been cut and centralised. They called for increased funding for third-sector organisations to continue providing local and financial care for those required to access care far from home.

“Some services (West of Scotland) are even lacking something as basic as a specialist unit or access to one…inpatient facilities are either inadequate or extortionately privately funded.”– Greater Glasgow and Clyde Adult Eating Disorder Service

Partnership working

Many respondents agreed with the Specifications focus on partnership working, highlighted the importance of this, or raised the need for better connections between a range of professionals and services - both within the NHS and between the NHS and other agencies such as education and the third sector. Comments relating to this theme were most commonly made at Outcome 4 (Supporting people with co-occurring considerations and comorbidities) and Outcome 7 (Discharge).

“We support the joined-up approach of these Standards through commitment to liaise with higher education settings. This cross-sectoral approach is imperative to create a shift in how we support service users.” – See Me

While some were encouraged by the Specification’s emphasis on collaborative working, others requested a greater focus on this. Respondents expressed disappointment about the lack of consideration given to the wider workforce that engages and treats people with an eating disorder, including GPs, Primary Care Mental Health Teams, Community Mental Health Teams (CMHTs), and Liaison Psychiatry. One healthcare respondent requested more details on how the Specification recommendations would impact local-level NHS tiered systems of care.

Another healthcare respondent felt that understanding of an individual’s early years needed to be elaborated further within the Specification, alongside greater reference to the role of schools in detecting, and supporting recovery from, eating disorders. One professional/academic organisation suggested that given the important role schools can play in eating disorder identification, education professionals’ views regarding communication and pathways should be sought.

Barriers to effective partnership working included: insecure funding of third-sector organisations; unintegrated IT, administrative and clinical systems; siloed services within the NHS; and challenges in establishing partnerships with eating disorder services. There were calls for the Specification to:

• Clearly outline how eating disorder services would interact with other services.
• Emphasise improved communication and relationship building between services, disciplines, and third-sector organisations.
• Give equity to third-sector organisations within decision-making and planning.
• Be accompanied by adequate resourcing of third-sector organisations and General Practice to facilitate collaborative working.

“Third-sector organisations will require increased resourcing to enable the implementation of this National Specification. Currently, many lack the funds to hire staff on a long-term basis, contributing to insecure service provision. We recommend where increased funds are not available, increased equity is given to third-sector organisations in decision-making and planning models, to ensure improved communication and better outcomes for the women of Scotland.” – The Scottish Women's Convention

One healthcare respondent also suggested that a national network group for eating disorder services in Scotland might improve collaboration and encourage services to work together to implement the Specification.

Monitoring, evaluation, research, and regulation

Support for monitoring outcomes, service evaluation, quality improvement, audit, and holding services to account regarding Specification implementation was expressed by many, most frequently at Outcome 1 (Leadership and Governance) and Q35 (Support needed). This was felt to be key to promote service development and equity of service provision across Scotland, and ensuring that changes proposed within the Specification are implemented and its intended aims achieved.

“It is helpful to have an emphasis on data collection and monitoring of outcomes… The standards set in the ED specification could be used to ensure equitable assessment and management of ED across all health board areas is being monitored and measured.” – NHS Education for Scotland (NES).

However, the complexity of data collection was highlighted, with one healthcare respondent stating that the Specification does not provide enough detail on planned evaluation mechanisms. Some, including Healthcare respondents and an advocacy organisation explained they did not understand how the Specification or individual Outcomes would be upheld in practice or queried how services will be held to and measured against these recommendations.

“The reality is that many services are far from meeting the standards outlined in the document. With that in mind… how will services be held to, and measured against, these recommendations?” – Healthcare respondent

There were calls to standardise data collection to allow for benchmarking, and for the Specification to be accompanied by outcome data collection guidelines. Robust, fit for purpose, and aligned IT systems, within and across health boards, were also requested. The University of Edinburgh’s Eating Disorders and Behaviours Research Group highlighted the focus on research and data collection as a strength of the Specification. They suggested drawing from guidelines being developed for eating disorder services in England and recommended training in service improvement methodologies to allow services to engage in evaluation.

NES (NHS Education for Scotland) felt that, as well as monitoring outcomes, organisations should monitor staffing levels to help avoid risks. SupportED advocated recording the use of NG tubes to evaluate outcomes better and increase transparency related to human rights. Some also raised the impact on staff capacity of data measurement and reporting or the need to give staff protected time, training, and support to deliver this. The Royal College of Psychiatrists Scottish Faculty of Eating Disorders (RCPsych.) similarly urged for measurement to be carried out in a supportive way, without adding unnecessary burden to services and celebrating successes alongside identifying areas for improvement. A professional/academic organisation welcomed the proposal of a joined-up approach to data and measurement across mental health, making the best use of already collected data to minimise the burden on services.

A few emphasised the importance of independent reviewing and monitoring of services. A healthcare respondent suggested using established frameworks such as QNIC and QNCC (Quality network for inpatient CAMHS / Quality network for community CAMHS). See Me also noted that a human rights approach to regulation requires involvement of those with lived experience. They proposed that lived experience service improvement groups and lived experience inspectors play a role in service evaluation and regulation.

“It's vitality important to give huge weight to lived experience and to independence of monitoring of services. As in many sectors, those in positions of clinical responsibility shift in and out of those holding these people to account and many are on friendly terms, and this leads to a lack of due independence.” – Individual

Finally, a small number commented on the value of clinical research and developing the evidence base and novel interventions for eating disorders. To support this, the University of Edinburgh’s Eating Disorders and Behaviours Research Group: suggested establishing research partnerships with universities and research groups; promoting a culture where people using services can expect opportunities to take part in research; felt it may be helpful to explore barriers to research within clinical settings to help mitigate these, and emphasised the importance of giving clinicians’ protected time for research activity and to engage with the evidence base.

Parents, families, and carers

Several felt that the Specification neglects the support needs of parents, carers, and family members and does not clarify their important role in treatment and recovery. The Edinburgh Carers Council, for instance, highlighted the toll that treatment and caring for someone with an eating disorder can take on carers’ wellbeing, and that this, in turn, can exacerbate distress. There were calls for the Specification to include:

• Increased consideration of how the Specification will impact families and carers.
• A clear statement of how families will be involved in treatment and details of how they will be collaborated with at different Outcomes, including Outcome 3 (Access to Care), Outcome 6 (Transitions); Outcome 7 (Discharge); and Outcome 9 (Shared and supported decision-making).
• Greater recognition of the impact of treatment and of caring for someone with an eating disorder on carers’ wellbeing.
• Increased focus on support for families and carers. Suggestions included improved access to consultations with, and support from, clinicians, peer support, and training.
• Consideration of how to involve families and carers in informing training, pathway development and service design, service delivery, and measurement.
• The Edinburgh Carers Council also suggested that the Specification link to the National Carers Strategy and the Triangle of Care, where other legislation, policy and standards are referenced within the document.

“Carers would like to see more support than just signposting to BEAT at the start of the diagnosis process which many find to be.. too much general information they are unable to filter in a time of crisis. Carers that have accessed private treatment have found parent consultations with clinicians to be particularly helpful in receiving specific information that is relevant to their situation and helps them in their role in supporting their cared for person’s recovery. Further support would be particularly useful when the cared for person is not accessing treatment (either on waiting lists or not engaging with treatment) this could be through more peer support opportunities for carers or through training/ psychoeducation.” – Edinburgh Carers Council

While agreeing that support for carers should be part of routine service provision, one healthcare professional / organisation highlighted the potential for carer over-involvement, the valid developmental need for people to individuate, and the legal right to confidentiality over 16 years old. An individual also shared a situation where their parents’ involvement assessment had been a barrier to them receiving effective treatment.

Lived experience involvement

Respondents agreed with, emphasised the importance of, or called for greater focus on involving those with lived experience of an eating disorder across various aspects of the Specification including: Specification development; service design and delivery; regulation, monitoring and evaluating outcomes; developing assessment tools; and designing and delivering training.

“The voice of those with lived experience should be front and centre to any Specification - have people with eating disorders been included in the drafting of these specifications?” – Individual

“Peer support workers within teams are hugely valuable and should be included in funding.” – Greater Glasgow and Clyde Adult Eating Disorder Service

See Me urged engaging with a diverse range of people with lived experience to ensure inclusive practice. They suggested that this could be done in partnership with equality organisations, preferably led by the communities they serve, to facilitate culturally appropriate lived experience involvement. In addition, See Me highlighted the importance of closing feedback loops where people with lived experience are involved in service development activity. SupportED similarly warned against tokenism, noting that lived experience involvement should be meaningful, realistic, compensated, well supported, and have accountability and transparency built in. One healthcare respondent highlighted this would require additional resources and service restructures.