18. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
19. ARFID is a relatively new diagnosis. It was first included in the American Psychiatric Association’s ‘Diagnostic and Statistical Manual of Mental Disorders’ (DSM-5) in 2013. It was then included in the World Health Organisation’s ‘International Classification of Diseases’ (ICD-11) in 2022.
20. While the DSM is used in clinical practice, research, and education within the mental health community, the NHS most commonly uses the ICD for mental health diagnoses. Because of this, we understand there is currently a lack of national guidance or policy in place for ARFID.
21. NICE guideline 69 explains it does not include any guidance on ARFID due to insufficient evidence. This means clinicians currently rely on emerging evidence and adapt strategies from other eating disorder guidelines when treating ARFID.
22. The Royal College of Psychiatrists has produced some information on ARFID. Like NICE, it says more research is needed to understand how it should be treated. However, it does provide clinicians with some information on what can be done to treat it.
23. The RCPsych guidance says treatments for ARFID normally focus on fixing any physical health problems, working out which food someone is avoiding and why, and helping them try foods they are avoiding. It says psychological treatments include CBT, graded exposure and other behaviour approaches such as food chaining, the sequential oral sensory approach and family-based approaches.
24. CBT is a type of talking therapy that can help people learn more helpful ways of thinking and reacting to challenging situations. The RCPysch guidance says there is a type of CBT developed specifically for people with ARFID. In this, people set goals and make changes to the foods they eat, working with a therapist to expose themselves to new foods or foods they avoid.
25. Graded exposure is a CBT technique used to help someone with ARFID change the way they act around food. They rank foods by how much anxiety they cause and then work with a therapist to plan trying these foods.
26. Food chaining is a method of introducing new foods to people using food they already eat based on their preference for texture, taste, temperature, colour or appearance. The sequential oral sensory approach focuses on fostering a positive association with mealtime and building a child’s confidence around food through structured interactions.
27. Family-based approaches include teaching the family skills that allow them to help the person with ARFID, helping with structure and routine at mealtimes, making changes to the home environment and teaching ways to deal with anxiety. There is a specific family-based approach that has been developed for ARFID.
28. Miss Y’s clinical records show the eating disorder team made a plan for her care in the absence of a commissioned ARFID service. We recognise some of these actions only occurred following Mrs Y’s complaint:
• referral to paediatric community dietetics for nutritional advice • advised the GP that they can ask for the referral to dietetics to be sped up • referral to occupational therapy for sensory-based eating support followed up with a letter of support • referral for low intensity treatment for anxiety (not related to ARFID) • engaged with the neurodevelopmental assessment team to try and expedite a referral for a second ASD assessment (the team said Miss Y does not meet the criteria for her referral to be expedited) • offered support to Miss Y’s family including CUES training • provided Miss Y’s GP with advice around ARFID.
29. We think the Trust’s plan was reasonable. It also covers some of the actions identified in the RCPsych guidance. The contact with the GP would cover ‘fixing any physical health problems’ and the referrals to dietetics and occupational health would cover ‘working out which foods someone is avoiding and why’ and ‘helping them to try foods they are avoiding’.
30. Our CAMHS adviser said this plan requires input from a range of professionals who all work in different services. They said that, without a single point of contact, families can often struggle navigating services. It is clear Mrs Y has understandably found the situation difficult, confusing and stressful. We are very sorry to hear about her experience.
31. Our CAMHS adviser said it is not generally appropriate for an eating disorder service to officer coordination when the child is not open to the service, like Miss Y. They said eating disorder services cannot be expected to provide coordination for patients who need a service that is not being commissioned.
32. Our CAMHS adviser said a review session with someone at CAMHS might have been helpful for Miss Y and her family especially with the number of referrals and outstanding actions. However, they said there is no requirement for it to do this as Miss Y was not open to the service.
33. Our CAMHS adviser said, in the absence of a professional responsible for coordinating Miss Y’s care within a mental health service, the responsibility for coordinating her care ultimately falls to her GP. The GP can also, if they feel it necessary, convene a multi-agency professional meeting.
34. Overall, we cannot see there is anything else the Trust should have done to support Miss Y. There is no guidance, policy or contract requiring it to provide a service for ARFID and it does not currently have the resources to do so. The Trust made relevant referrals to other services and provided Miss Y and her family with appropriate support.
35. We recognise Miss Y has been left without treatment and appreciate the difficult position this has left her and her family in. We have not seen anything to indicate this was due to a failing by the Trust. We sincerely hope our consideration provides Mrs Y with some clarity and reassurance.