Access to services and reasonable adjustments
15. Mrs T complains the Trust refused her son access to services because he was non-verbal and had development delays, and it did not put in place reasonable adjustments to help him.
16. Mrs T refers to services such as play therapy, learning and disability CNS, ARFID referral, SALT and sensory oral sequential program.
17. The Trust’s November 2022 complaint response apologised the SFDP at the FEDS did not consider play therapy and making a referral to the CNS.
18. However, during our investigation the Trust said the clinical team did consider other interventions and felt indirect work, via parents and school, were more likely to be effective. It explained Master T’s parents attended its parent intervention, a behavioural approach to feeding difficulties, such as ARFID. This is an evidence-based approach using behavioural therapy aspects of family-based treatment.
19. It said the FEDS’ Nursing and Psychology Teams provided family and school led behavioural interventions. Because of the evidence base for indirect approaches (for example, family-based treatment), it is not uncommon to offer other interventions, besides individual behavioural approaches, for example ‘feeling and body investigators’. It explained feeling and body investigator approaches involve high levels of cognition and mentalisation. It said based on Master T’s developmental needs from the records at the time, it would not have been an appropriate approach.
20. It said there was liaison with other clinical services including paediatrician, OT, dietetics and speech and language.
21. We will address Mrs T’s complaints separately below:
Access to services
22. The article, Journal of Behavioural and Cognitive Therapy, explains that whilst there is growing research and clinical interest in ARFID, the management of ARFID lacks robust, evidence-based guidance on optimal treatment interventions, appropriate clinic structures, and modes of service delivery.
23. Our adviser said there is no specific standard/guidance to say which ARFID treatment to offer and when. Even now there is limited guidance and studies in this area. At the time, feeding disorder services would, on an individual basis, consider and rule out treatments which were less likely to be beneficial/effective.
24. Our adviser said the factors which a feeding disorder service would take into account, would be:
• individual needs including age and developmental stage • available treatments within the service • parents’ wishes.
25. The medical evidence shows that in mid-February 2020, a consultant paediatrician from another hospital trust sent the Trust’s FEDS a clinical letter concerning Master T’s oral intake. This letter explained he was diagnosed with autism when he was two years of age. Medical reasons for his poor oral intake were excluded by the consultant paediatrician. They explained ‘it all fits very much with avoidant restrictive intake disorder and associated with his autism.’
26. In early March, the Trust’s Clinical Psychologist considered the referral from the consultant paediatrician. They accepted the referral in early March for Master T to be assessed.
27. Within the March clinical letter, the clinical psychologist explained the focus of their assessments and interventions is on relevant behavioural, emotional and interactional aspects of feeding and eating, rather than medical led approach where diagnosis determines the intervention.
28. The clinical psychologist recommended to the paediatrician several useful documents, including ARFID: A guide for parents. A copy of this letter was sent to Mrs T in early March.
29. In early June, the Trust assessed Master T. During the assessment, it is recorded Mrs T explained to the Trust, her son had already used services/strategies like food chaining and sensory play, which had not helped. The assessment concluded he had significant feeding difficulties. It highlighted there was likely a sensory component to his difficulties and that his current diet is poor and likely not to be nutritionally complete. It said it would discuss both these elements with OT and the dietitian.
30. The medical notes say, ‘Mrs T may benefit from attending our next Parent group.’ Our adviser said this group appears to have included the key components that would be helpful for parents of a child at this developmental stage with eating and sensory difficulties. They said this approach was in line with best practice, and the evidence base available at the time, for example that set out in Childhood Avoidant/Restrictive Food Intake Disorder: Review of Treatments and a Novel Parent-Based Approach: Journal of Cognitive Psychotherapy. This article refers to possible treatment approaches for outpatient care, which include family-based treatment and parental responses to child problematic eating habits.
31. The Trust arranged an OT appointment to assess Master T’s sensory needs for mid-June and a dietician to review his food diary and make recommendations. A copy of this letter was sent to the SALT specialist, paediatrician, OT and paediatric dietitian in June.
32. The Trust’s OT carried out a sensory assessment in mid-June and made several recommendations to Mrs T, which included:
• Engaging in proprioceptive (body’s ability to sense its location, movements and actions) and vestibular calming alerting activities (used to help children with sensory needs, improve balance, coordination and attention). A handout was included in the letter.
• Graded exposure to messy food play.
33. By August, the medical notes show Master T had a dietician and OT assessment and Mrs T attended two sessions of the Trust’s parent group.
34. During the clinical appointment in late August, the clinician recorded that Mrs T agreed meetings had been positive and her son’s diet was improving. The clinician advised Mrs T to continue to keep a food diary and attend a third session of the parents’ group.
35. In mid-September, Mrs T attended a virtual parent’s workshop for sensory and messy play presentations and the Trust’s FEDS team sent presentation PDFs (portable document format) to Mrs T.
36. It is recorded in the notes that the FEDS considered cognitive behavioural therapy (CBT), but ruled this out, due to Master T’s cognition ability and language skills.
37. In October 2020, the Trust provided additional input to Mrs T through the Trust’s Paediatric Dieticians.
38. In late 2021 and early 2022 there was liaison work undertaken by the Trust’s Psychologist with Master T’s school, and training offered to help them support his eating difficulties. Our adviser said this is in line with good practice in working with the wider system.
39. Our adviser said the medical records show the Trust considered and offered family-based therapy early in the referral to FEDS and throughout Master T’s care and treatment.
40. There is no specific guidance to say whether family-based therapy or feeling and body investigators is more appropriate. At the time of the intervention there had not been any therapy trials comparing clinical outcomes for the two approaches. It would be down to clinical judgement and experience which would be more appropriate for a specific child at a specific time.
41. Our adviser said there is no evidence within the medical notes the Trust’s FEDS offered feeling and body investigators for Master T. However, not offering this type of intervention was not in itself an error by the Trust as there are other evidence-based approaches available which are at least equally appropriate.
42. Our adviser explained that family-based therapy approach is an individual therapy - direct behavioural approach. Family-based therapy (an indirect, parent-based intervention) would have been more beneficial for Master T rather than feeling and body investigators approach. This is because he was four years old, non-verbal, and was diagnosed with social communication disorder at the time of the referral. He did not have the ability to work individually around feeling and body investigators for ARFID and needed the support of his parent(s), which he received through family-based therapy. This means feeling and body investigators would not have been beneficial or appropriate. Our adviser reassured us this is clearly in line with widely accepted practice and good clinical judgement.
43. Our adviser said based on their clinical experience, family-based intervention (indirect intervention) was most beneficial for Master T, which is what the Trust considered, offered and put in place.
44. Our adviser said it is worth noting there is usually a considerable lag between the development of evidence-based approaches and their use in frontline mental health teams. However, in this instance the treatment offered by the Trust was very much up to date.
45. We are sorry to learn of Mrs T’s concerns about the Trust and the services it provided. Informed by clinical advice we consider that based on the age and developmental stage of Master T, his family were offered appropriate treatment in a timely manner. This is based on the best available research evidence at the time Master T was assessed, as well as clinical judgement and experience. We have not found any failings.
46. We have considered Mrs T’s concerns about the ARFID referral and diagnosis later in this report.
Reasonable adjustments
47. Mrs T complains the Trust did not put in place reasonable adjustments to help her son while he was under its care.
48. There is no specific response from the Trust on this complaint.
49. Our adviser said the Trust made sufficient reasonable adjustments to help Master T while under its care. These were providing a family/parent-based intervention. This is because his age made individual therapy inappropriate. The parenting intervention took into account his autism associated difficulties with sensory issues and inflexibility. The adjustments in place were thoughtful and appropriate for his developmental stage at the time and his age. There are no national guidelines specific to this, but the Trust’s actions reflect current good clinical practice.
50. The team also liaised appropriately with school, but again, there are no national guidelines specific to this. Doing so reflected good clinical practice in child mental health services. We cannot say the Trust did anything wrong here.
Attempted discharge
51. Mrs T complains the Trust tried to discharge her son before discussing if any further referrals could be made or whether there was access to other potential therapies. She says staff also tried to refer her son for a PEG feeding tube without trying other options.
52. During our detailed investigation, the Trust informed us the records show the possibility of a PEG was discussed during an appointment in May 2021 in a multidisciplinary team (MDT) meeting with local services and Mrs T. It noted she understandably expressed a wish to ensure the Trust had tried everything before considering this option. A second opinion was sought from a senior psychologist in October. They reiterated the decision to insert a PEG would sit with the local medical team and said Master T would not benefit from individual work in the FEDS clinic. He would though continue indirect support from parents and school.
53. It said it could not see evidence of a referral for a PEG from the FEDS team, as this would typically be a decision for the local medical team.
54. The Trust said in its clinical letter (dated late May 2021) that following the MDT meeting (early May) it explained to Mrs T that it may be necessary to discharge her son from its FEDS. This was because he was not ready for many of the types of therapy that its team offers, such as CBT, as he did not currently have the cognition or language skills. It also discussed in the MDT meeting the possibility of a PEG.
55. Before discharging Master T, the FEDS said it needed to have further discussions with him and his family, alongside the dietitian, to better establish his nutritional status and create a plan moving forward.
56. In May, the FEDS decided not to offer further psychological interventions.
57. Our adviser said this appears to be a reasonable decision based on the treatment offered to date (outlined earlier in this report). Providing a further direct therapeutic intervention to a child of this age would not be appropriate or effective and a parent-based approach had already been offered. In the circumstances, the decision to offer no further treatment at that point was reasonable. We cannot see the Trust did anything wrong here.
58. Our adviser said given there may be a long-term risk of malnutrition, discussing a referral for a PEG with Mrs T was sensible even if this was not progressed.
59. Informed by clinical advice we consider it was reasonable for the Trust to discuss/consider discharge because Master T was not ready for further interventions from its team and the possibility of a PEG. We consider he was offered appropriate treatment in a timely manner. We find no failings.
ARFID referral/diagnosis
60. Mrs T complains the Trust delayed in investigating her son’s symptoms relating to ARFID and delayed in making a referral for a diagnosis.
61. During our investigation the Trust explained it understood the pathway to a ARFID diagnosis can be frustrating and slow, and it apologised the diagnosis was not made sooner. It explained ARFID is a relatively new diagnostic category, and the diagnostic pathways are not readily set out. It said the later diagnosis did not impact on the interventions offered to Master T and his family.
62. The Trust said it found that a diagnosis of ARFID can be a barrier to accessing necessary local support for some children, as services (at the time) cannot treat ARFID, and the child therefore receives poor local service. It said a diagnosis can also shift efforts away from supporting wider neurodevelopmental needs, if these are supported then this might have a positive effect on feeding difficulties.
63. By way of background, our adviser said feeding disorder services can be diagnostically driven interventions (concerned with the diagnosis) rather than formulated treatments. This is where they aim to understand the person’s specific difficulties, how treatment goals are established and reviewed when there is a lack of progress. There is no guidance to say whether a feeding disorder specialist service should be one or the other.
64. The Trust’s FEDS did not adopt a diagnostic model treatment provision and there are no guidelines or studies at the time to say it should have.
65. Our adviser said there is no specific guidance about when to diagnose ARFID. The FEDS was considering ARFID as being the reason for Master T’s eating disorder from his referral by a consultant paediatrician.
66. The consultant paediatrician within the referral letter to the Trust in February 2020, said Master T had ‘poor oral intake’ and could ‘not see there was a medical reason for this.’ The consultant said, ‘It all fits very much with avoidant restrictive intake disorder associated with autism.’
67. Following the FEDS initial assessment in early June, it carried out a variety of assessments and investigations to determine the cause of Master T’s poor oral intake (including whether it was related to ARFID).
68. Our adviser considers there was no delay in investigations, and they were carried out in the correct order. For example:
• In early March, the FEDS accepted the referral from the consultant paediatrician. It advised Mrs T to read ARFID: a Guide for parents. This suggests the FEDS was considering ARFID as a reason for Master T’s eating disorder.
• The Trust concluded he had significant feeding difficulties following its assessment in early June.
• In mid-June, the Trust’s OT completed a sensory aspect profile.
• In mid-August, the Trust sent Mrs T on a workshop which covered, ‘Feeding and Eating difficulties in Children and ARFID’ and ‘Nutrition in ARFID.’
• In mid-October, the Trust’s Specialist Dietician was involved in the appointment with Mrs T. The dietician made food recommendations.
69. By October 2020, the medical records indicate FEDS were treating Master T as though he had ARFID.
70. Our adviser said, because we do not know what relevant local services/support would have been available – at the time - had Master T been formally diagnosed sooner, we cannot say whether he would have received poor local services. We do not know what interventions would have been available locally if he was diagnosed with ARFID sooner and communicated to Mrs T, and whether he would have had access to these.
71. If, as the Trust has said, a diagnosis of ARFID would have been a barrier to accessing necessary local support, then our adviser said the decision not to provide formal diagnosis sooner was made in Master T’s best interests. This explanation is reasonable, in line with clinical experience.
72. If the Trust had diagnosed him with ARFID sooner and informed Mrs T, based on clinical judgment and experience, our adviser said the focus for Master T’s care and treatment would have centred on his ARFID diagnosis, rather than support for his wider neurodevelopmental needs (autism) which affected his feeding difficulties.
73. Our adviser said the Trust comment that ‘diagnosis can also shift efforts away from supporting wider neurodevelopmental needs, if these are supported then this might have a positive effect on feeding difficulties’, is a reasonable explanation and in line with good clinical judgement and experience.
74. We have carefully considered all the relevant evidence in this complaint. We consider the FEDS carried out relevant investigations into the causes of Master T’s poor oral intake, including ARFID. Informed by clinical advice, we do not consider it missed opportunities to confirm an earlier diagnosis of ARFID and communicate this to Mrs T sooner. This is because it is more than likely that a diagnosis of ARFID would have been a barrier to accessing necessary local support and therefore not providing a formal diagnosis sooner was made in Master T’s best interest. There is no evidence of a failing.
75. We are sorry to learn of Mrs T’s complaint. Our final decision is not made without recognition of the impact this has had on her and her family. We hope we have explained the thorough consideration we have given to our decision and clearly outlined the reasons for it.