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

7. Outcome 3: Access to Care

This chapter presents the analysis of responses to Q14 to Q16 which focus on Outcome 3.

Over nine in ten (92%) of those answering Q14 agreed to some extent that Outcome 3 will improve the experiences of people accessing eating disorder treatment; 29% strongly agreed and 63% agreed. All individuals who answered agreed, with 55% strongly agreeing; this is the joint highest level of strong agreement recorded by individuals across the consultation.

Four fifths (82%) of those answering Q15 agreed to some extent that Outcome 3 will improve the outcomes of people accessing eating disorder treatment; one quarter (24%) strongly agreed and 58% agreed. All other organisations who answered agreed, as did around four fifths of individuals (82%) and healthcare respondents (78%).

Q16. Reading the “Outcome in Action”, which is intended to describe how the “Outcome 3 – Access to care” will be delivered, do you have any other comments about the Outcome?

Self-referral

Around three quarters left an open comment at Q16. Views regarding self-referral were the most common theme. While some agreed in principle with making it easier for people to access the care they need, respondents frequently mentioned challenges or implementation resources required. Concerns were expressed about self-referral:

• Leading to increased demand for already overwhelmed services, further reducing capacity and delaying access to treatment.
• Wasting specialist service resources through responding to inappropriate referrals or causing difficulties or complaints where referees perceive disorders that would not meet diagnostic criteria for specialist input or may be more appropriately managed by other services.
• Requiring improved technology and increased clinical and administrative staffing levels to ensure responsiveness.
• Impeding risk-based decision-making and the determination of clinical urgency without objective clinical information and qualitative description of difficulties.
• Causing issues around clinical/medical governance where very physically unwell individuals are potentially sitting on long waiting lists and where GPs have not been involved in the referral process.
• Being unrealistic, unworkable, or too challenging for services currently, including for CAMHS teams and rural services.
• Disadvantaging individuals who are less able to advocate for themselves.
• Deskilling primary care practitioners and other referrers in recognising and managing eating disorders.
• Being unhelpful for those with co-occurring considerations, by, for instance, causing treatment delays where people have not been screened by primary care to identify the need for referral to other services.
• Leading to eating disorder specialists being put in the position of assessing beyond their clinical competence and remit.

“There can be difficulties determining clinical urgency of patients when referrals are made from professionals and agencies not based in health, as information about the patient's physical health status tend not to be provided. That would also be the case for self-referrals. The patient's GP is also then unaware that the patient has been referred and they have a very important role in managing the patient's health. Consideration as to how that is managed safely would need to be planned.” – Healthcare respondent

There were calls to: provide examples of services already implementing self-referral to support services to envision this in practice and plan accordingly; develop robust, standardised referral forms and criteria that can adequately capture urgent needs; and to strengthen pathways and protocols between specialist and non-specialist services as a priority over introducing self-referral. A professional/academic organisation felt consideration should be given to how any structural changes in referral pathways are shared with the public. They requested signposting to support for parents and school staff concerned about a younger person, as well as clear self-referral pathways.

“The major element of this section will be about improved pathways, that includes with GPs, schools, and third-sector organisations…. The majority view was (self-referral) can be made to work, but the practicalities of how it works will vary by the service context…. Improving training, for GPs, CMHTs and other partner organisations, as well as strengthening the communication and links with them, will be as important as a self-referral pathway on its own. Improving pathways will be more effective at reducing barriers to treatment.” – RCPsych. Scottish Faculty of Eating Disorders

Early identification and intervention

A recurring theme was comments on early identification and intervention. 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. A healthcare respondent explained they are struggling to deliver treatment according to SIGN guidelines as they do not have access to all recommended therapies for eating disorders. Another healthcare respondent encouraged local consultation with community groups and third-sector organisations to inform the development of service pathways with an early intervention component.

“It will be very damaging if teams… are put under even more pressure to deliver unrealistic outcomes given current staffing limitations. Extra funding would need to be available to provide additional staffing to meet this target (especially if we want to retain specialist staff working in eating disorder services and avoid putting them under undue strain associated with unrealistic targets).” – Healthcare respondent

There were calls for the Specification to: include a clearer definition of an ‘urgent case’ within timeline recommendations; provide more detail at Outcome 3 on the processes of change and how these will differ around the country; outline how development processes will be supported and resourced; detail evidence-based self-help materials for individuals and carers to access whilst on the waitlist; and signposting to advocacy organisations who can help people retain information and overcome barriers to engagement with services.

Several agreed with the need for early identification of eating disorders or the proposed prioritisation and identification criteria, including not just basing this on Body Mass Index (BMI), or self-report measures such as the Eating Disorder Examination Questionnaire (EDE-Q). There were calls to: make clear that referrals to an eating disorder service should be made immediately where an eating disorder is suspected after an initial assessment; and offer engagement and training for refers and non-specialist staff, including schools and GPs, to facilitate early identification and intervention and to ensure that non-health referrers provide the necessary clinical information in their referrals.

“Identification and screening will be important. Early intervention for first presentation ED should be prioritised" – Dudhope Young People's Inpatient Unit, NHS Tayside

A small number requested clarity on the models of tiered/matched care being proposed or discussed the benefits of a stepped care approach. Two healthcare respondents, for instance, proposed a Primary Care Eating Disorder service across their area to offer screening and specialist advice to other staff in primary care, provide lower-intensity interventions, establish links with outpatient and inpatient services, and liaise regularly with specialist clinicians in all age groups. They felt this would improve efficiency, support access to intervention without requiring onward referral to specialist services, and improve access for rural areas. They suggested a trainee CAAP role could be developed to staff this in conjunction with universities and NES.

Full range of eating disorders

Several respondents were encouraged by the Specification’s proposals concerning the full range of eating disorders, emphasised the importance of equitable access across a range of presentations, or highlighted limitations in current support.

However, respondents again predicted an increased workload or expressed concern about the skills mix with teams when delivering proposals. There were calls for increased funding, staffing, guidance, and training, if the range of presentations to be supported is widened. A healthcare respondent wondered how the severity of eating disorder presentations would be prioritised. They expressed concern that, with limited resources, certain presentations may be inappropriately directed to less intensive interventions than they can currently access. Greater Glasgow and Clyde Adult Eating Disorder Service cautioned against assuming that all those with these presentations should sit within a specialist service, when some milder cases may be more appropriately managed within other services or should not be considered as mental health conditions.

A few respondents appreciated the commitment to treat Binge Eating Disorders (BED) in eating disorder services rather than weight management services. However, two healthcare respondents cautioned against restricting beneficial weight management treatment, provided in line with SIGN guidance, for people living with co-occurring conditions such as Obesity and Type 2 Diabetes. They emphasised that eating disorder services are not weight management services and that specialist weight management service input can be vital in some instances. One requested consideration of the evidence as to whether it may be appropriate, in some instances, for someone with BED to be treated within weight management services, where psychological care is integrated, and joint work can be done alongside mental health services. The RCPsych. Scottish Faculty of Eating Disorders advocated a multi-agency approach and collaboration with local weight-management services.

There were calls for the Specification to clarify what is meant by a primary diagnosis of BED, recognise different levels of weight management provision at tiers 1-4, and include examples of where certain eating disorders can be appropriately managed outside Specialist eating disorder services.

Particular concerns, caveats and considerations raised about Avoidant / Restrictive Food Intake Disorder (ARFID) included:

• The need to reference ARFID in the document's introduction to minimise the risk of this being overlooked in Specification implementation.
• Query of the Specifications’ assertion that ARFID is classified as a ‘feeding disorder’ in the International Classification of Diseases-11^th edition.
• The lack of clear national guidance on ARFID and the need for detail within the Specification on how eating disorder services can be part of a multi-agency pathway approach to ensure services are realistic and not overwhelmed.
• A view that mainstream treatment may be inappropriate for those with ARFID and a suggestion this may be better addressed through collaboration with other services, such as dietetics, psychology and play therapy.
• The importance person-centred care to understand the root of behaviours.
• A concern that the concept of a multi-agency pathway for ARFID may result in people falling through gaps between services, receiving less-than-optimum care where no one agency holds lead accountability for treatment, or that services will fail to deliver on the NHS’ commitment to a ‘no wrong door approach’. An advocacy organisation called for a national framework to outline expectations on health boards around treatment of ARFID to protect against this.
• The need for more extensive research into ARFID to ensure better support.

Other themes

Two respondents advocated further consideration at Outcome 3 around improving access to care for specific groups who may be at increased risk of developing an eating disorder, face particular access barriers, or have specific patterns of meaning to their disordered eating, including care experienced, LGBT+, and neurodiverse people.

An advocacy organisation felt that Other Specified Feeding or Eating Disorder (OSFED) should be referenced in the document's ‘who the Specification applied to’ section.

A healthcare respondent and NES valued the suggestion of regular referral data audits and formal reviews. NES suggested this include data from specialist eating disorder teams, generic mental health teams, and all services that form part of an all age specialist eating disorder service, including primary care.

Additional information about the overarching theme of partnership working provided in response to Q16 included calls to:

• Recognise that whole system responses to eating disorders at all ages and stages of illness, including early stage, will involve multiple agencies and partnership working with GPs, schools, community nurses, dietetics and hospital medics.
• Consider how primary and secondary care mental health teams can contribute to treatment for people who do not meet criteria for specialist services.
• Align inpatient services with outpatient care models such as Family Based Therapy.