Findings and clinical implications

Timely access to eating disorder services was an area of concern raised by many respondents. Just over half of participants knew how to access services for initial assessment, in the context of significant delays in receiving appropriate treatment. For example, only 38.9% of loved ones in CYP and 28.6% in adult services reported that their loved ones were admitted as soon as necessary. This is concerning, given that prompt treatment can reduce chronicity and enhance recovery.^{Reference Austin, Flynn, Shearer, Long, Allen and Mountford23} In addition, loved ones expressed moderate confidence in the ability of general practitioners (GPs) to spot the signs of an eating disorder and refer to the appropriate mental health service.

In the UK, GPs act as an important gateway for patients to access care for eating disorders.^{Reference Demmler, Brophy, Marchant, John and Tan24} Despite this, recent qualitative research with GPs practicing in the UK suggests that these professionals feel undereducated, underresourced and underequipped to respond to concerns of patients with eating disorders in primary care.^{Reference Malson, Tischner, Herzig, Kitney, Phillips and Norweg25} This further highlights the need for improved training and enhanced professional resources for GPs in the UK. Encouragingly, all CYP services in England received significant government funding to partake in a large-scale transformation programme to support the development of dedicated community eating disorder services.^{Reference Eisler, Simic, Fonagy and Bryant-Waugh26} This initiative included a newly developed training curriculum to upskill the workforce. Importantly, requirements for these new services stipulated that they should be accessible via self-referral, thus enabling more timely access to specialist support, with guidelines indicating 1 week for urgent referrals and 4 weeks for more routine referrals. However, it is worth noting that progress toward these targets was affected by the surge in referrals to CYP community eating disorder services during the COVID-19 pandemic,²⁷ indicating the urgent need to ensure adequate service provision in CYP settings to meet clinical demands. The need for dedicated and extensive training in eating disorders for professionals has been recognised by NHS England; the organisation has commissioned whole-team training for both CYP^{Reference Eisler, Simic, Fonagy and Bryant-Waugh26} and adult eating disorder services.^{Reference Novogrudsky, Gray, Mitchell, Attoe, Kern and Griffiths28} This is an important step toward upskilling professionals, and is an ongoing process.

The transition process between CYP and adult services, and between eating disorder teams, could be significantly improved; the overall experience was rated poor (mean: 35.5, with 100 being excellent). Although a transfer/handover meeting or a transfer summary were often provided, only 54.4% had a key professional identified before transition to the adult service. Indeed, mirroring the findings in this survey, a recent systematic review examining problematic age transitions in eating disorders highlighted a number of issues, including a lack of involvement and information for loved ones during the transition process, poor communication and differing treatment approaches between CYP and adult services.^{Reference Wade29} Indeed, this finding is not unique to those caring for a loved one with an eating disorder, and has been reported by caregivers experiencing a transition in care for their loved ones with psychosis, bipolar disorder and depression.^{Reference Clibbens, Berzins and Baker30} It is important that services involved in transition address the reported gaps in this process by (a) ensuring that loved ones are involved with, and aware of, the process; (b) ensuring that correct information is passed to the patient, their loved ones and the service they are transitioning to; (c) an appropriate care plan is in place and has been communicated with the service they are transitioning to and the family, with sufficient time before the transition takes place; and (d) identifying the most suitable service for patients with more unique needs that may not be adequately met in ‘traditional’ eating disorder services (e.g. avoidant/restrictive food intake disorder). For professionals seeking further pragmatic guidelines for managing transitions in eating disorder teams, the relevant national guidelines should be consulted.^31,32

Another potential area for improvement is the involvement of loved ones in care – this includes improved information sharing, increased involvement in treatment and support for loved ones themselves. Just over 20% of respondents indicated that an appropriate level of information/support was provided during assessment. Indeed, this finding appears to be consistent with the broader experiences of carers within the NHS, including those whose loved ones are accessing care in in-patient settings^{Reference Giacco, Dirik, Kaselionyte and Priebe33} and secondary mental healthcare teams.^{Reference Cree, Brooks, Berzins, Fraser, Lovell and Bee34} It is important to equip loved ones with information and support to manage eating disorders when they first access services, especially given the current long waits for NHS mental health treatment.³⁵ Indeed, key recommendations for early intervention in eating disorder pathways mention the routine involvement of loved ones, including the provision of carer support.^{Reference Allen, Mountford, Elwyn, Flynn, Fursland and Obeid36} For example, parent group models for the early intervention of young people with eating disorders are associated with improved knowledge and confidence for parents, and improved eating disorder psychopathology and weight gain for young people.^{Reference Nicholls and Yi37,Reference Rosello, Gledhill, Yi, Watkins, Harvey and Hosking38} The success of group models extends beyond just parenting groups, with positive outcomes reported for a group attended by partners, siblings and parents caring for CYP and adults with an eating disorder.^{Reference Macdonald, Murray, Goddard and Treasure39} We can also learn from literature in other severe and enduring mental health conditions, such as psychosis, where UK-based research has reported improvements in measures of carer distress and/or well-being following interventions such as carer education and information groups,^{Reference Cochrane, Moran and Newton40,Reference Riley, Gregory, Bellinger, Davies, Mabbott and Sabourin41} and specialist psychological support for carers.^{Reference Smallwood, Jolley, Makhijani, Grice, O'Donoghue and Bendon42}

There is a marked discrepancy in the proportion of loved ones who report feeling involved in care between CYP (range: 69.2–90.2%) and adult (range: 33.3–49.4%) services. In addition, loved ones who received day care and out-patient adult services reported poorer communication from staff and lack of information about eating disorders being provided, compared with those receiving in-patient treatment. This finding is not unique to the eating disorder carer population; research on carers of loved ones in secure mental health facilities also report challenges with communication, and staff working in these facilities report difficulties negotiating the complexities of information sharing and data confidentiality.⁴³ It is clear that increased emphasis on establishing clear communication channels between eating disorder services and loved ones is needed, provided that patients have consented to this. If appropriate consent cannot be obtained, avenues need to be explored regarding how loved ones can contact professionals if they have concerns about their loved ones, without violating patient confidentiality. Indeed, we may be able to learn from an NHS England toolkit for carer support and involvement in secure mental health services, which outlines specific guidelines for balancing involvement and confidentiality when working with carers.⁴³

More resources need to be dedicated to discharge planning across all settings, given that under half of respondents in CYP services (42.1–50.0%), and under a quarter in adult services (19.7–25.0%), felt confident in managing their loved ones’ eating disorders on discharge. Indeed, a recent qualitative study on patients being discharged from intensive hospital treatment for anorexia nervosa in the UK highlighted significant barriers to continued recovery, including poor discharge planning and an insufficient support system in the community.^{Reference Clark Bryan, Macdonald, Cardi, Rowlands, Ambwani and Arcelus44} It is clear that involving loved ones in discharge planning, providing more comprehensive discharge plans and ensuring that loved ones are aware of who to contact if they were concerned will be useful starting points to improve these experiences. Furthermore, the sustained involvement and upskilling of loved ones throughout high-intensity treatment programmes would likely improve loved ones’ confidence, and patients’ perceived support, in the management of the eating disorder post-treatment and in community settings.

In summary, our findings highlight the importance of services prioritising collaborative working and effective communication throughout the patient journey, from receipt of referral to discharge, and particularly when transitioning between services. To allow for improved access to services, we would recommend that services keep an open mind on the diversity of eating disorder presentations, avoiding a stereotyped view of what constitutes an eating disorder presentation. We would also recommend that services consider how they are supporting the patient's journey within the service, being mindful of the importance of continuity of care as well as ensuring that a case-load is regularly reviewed to ensure that timely discharges are enacted, ensuring resource optimisation. Finally, we recommend that loved ones are invited to be involved at all stages of the patient journey, while still respecting patient's wishes and confidentiality. Loved ones include the individual's main carer(s) and wider systemic networks, such as siblings, partners and extended friends/families. These individuals can be offered skills-based training and practical support to enable carers to feel more in control of the care for their loved one, and to ensure a robust relapse prevention plan.

Limitations

The findings of the current study need to be viewed in the context of several limitations. Although our study included a large number of carers with experiences of a range of therapeutic settings, most participants were female parents/step-parents of a loved one with anorexia nervosa. Participants were also mostly White British, with other ethnic backgrounds being comparatively underrepresented. The mean duration of illness was 4.7 years, therefore the survey may capture experiences of care for individuals who have a longer duration of illness, whereas many CYP and young adults may have a much shorter duration of illness (e.g. those accessing first episode rapid early intervention for eating disorders (FREED) services).^{Reference Brown, McClelland, Boysen, Mountford, Glennon and Schmidt45} It is also possible that respondents in our study reflected those with negative service experiences, who were more motivated for change, potentially biasing our findings. It would be beneficial for future research to seek to recruit a more diverse sample by expanding recruitment channels, such as by advertising the research in FREED services, to capture experiences of those with a much shorter duration of illness.

In making comparisons between experiences of care in CYP and adult settings, it is important to consider that carers are routinely involved in CYP care unless a capacious young person aged ≥16 years requests that they are not involved; unfortunately, we did not have the data to establish whether this was the case for carers who reported not being involved in care. Furthermore, our comparisons did not allow for consideration of the likely difference in domestic circumstances between those accessing care in CYP and adult services (i.e. that those accessing care in CYP services are more likely to still live with their parent/carer). Future research should seek to address this by drawing direct comparisons between the perspectives of carers who share a home with their loved one versus those who live independently.

Given that our survey was informed by our previous focus group findings, and co-developed with our PPI group, we did not include a direct, validated measure of carer distress. This is an outcome that is frequently reported in carer research,^{Reference Zabala, Macdonald and Treasure8,Reference Chang, Zhang, Jeyagurunathan, Lau, Sagayadevan and Chong46} and it would be beneficial for future research to compare carer distress across the healthcare interface. It would also be interesting to compare the reported standard of carer support dependent on loved one's clinical diagnostic factors, including comparisons of carer perspectives for differing illness durations, eating disorder diagnosis and age at onset. This would help us to identify particular populations in which carer support may require particular attention for improvement, although we acknowledge that published national guidelines should be met by all care providers regardless of eating disorder diagnostic factors.

Furthermore, there was a significant level of missing data throughout the survey, as responses were optional, not mandatory. It was not possible to assess the reasons for missing data; it might be that participants chose not to respond to questions that were not relevant to their experiences, or it might be that they did not respond to questions that were relevant, but too upsetting/distressing to reflect on and respond to.

The survey was conducted online, and those without access to the internet or appropriate devices may have been unable to participate. Their perspectives may have added great value, especially given the changes in care delivery in 2020 as a result of the COVID-19 pandemic. Thus, future research should seek to recruit a more diverse sample and utilise accessible data collection methods to increase generalisability. The survey is retrospective, and there have been various initiatives/changes to eating disorder service provisions in the UK.

In conclusion, this survey captures the experiences of individuals caring for a loved one with an eating disorder in the UK. Although our findings indicate a key discrepancy between the experiences of those accessing support in CYP versus adult services, the data suggests that there are gaps in the provision of carer support across all settings. There is, therefore, a need for both CYP and adult services to consider the key areas identified for improvement, including more timely access to support services, improved transition processes and discharge planning, and increased involvement of and/or support for carers themselves at all stages of their loved ones’ treatment journey.