Rejected referrals
29. Miss A complains the Service rejected referrals for O on three occasions, despite her GP, a paediatrician, and CAMHS supporting the referrals. Miss A feels these delays meant O’s condition deteriorated because she was not receiving any specialist support for her eating issues.
30. The Trust says the Service rejected the first referral due to O’s age. The Service is commissioned for children and young people between the ages of eight and 18 years. O was seven at this point.
31. Following consideration of the second referral, the Service felt O should be supported by community dieticians and to be monitored by her GP. It also recommended O should continue to work with CAMHS.
32. At the time of the third referral, the Service noted O had gained weight. It considered O should continue to be supported by the community dietician and CAMHS.
33. By the time of the fourth referral, three months later, the Trust says O was presenting with eating disorder issues – she did not want to put on weight, felt she was fat and wanted to lose weight. The service accepted the referral.
34. Transformation Partners in Health and Care guidance says, ‘it is important for those referring and assessing young people not to automatically assume an eating disorder when disordered eating is observed but to consider other possibilities in a comprehensive and holistic formulation’.
35. Trust information tells us the Service is a specialist children’s eating disorder service. It is commissioned to treat and support children and young people aged eight to 18. The service is commissioned to provide support and intervention for recognised eating disorders such as anorexia, bulimia and binge eating.
36. We can see from O’s clinical records the GP referred her to the service, and it rejected her on three occasions, before it accepted her seven months after the first referral.
37. We asked our psychiatrist adviser if the Service was right to reject the three referrals. They said it was correct to reject the first referral given O’s age. They said from the second referral, it was evident the Service re-considered the information provided. The information indicated O had disordered eating, but this did not appear to be consistent with the eating disorders the Service was commissioned for. They explained the service has needs to consider diagnostic requirements when looking at referrals in line with the purpose it is commissioned for.
38. We can see at this point the Service directed the family to ongoing support in the community, through the community dietician in conjunction with CAMHS (who were already involved). Our adviser felt this was the right course of action. From the information provided to them, the Service did not meet O’s needs.
39. O’s records indicate that, between this rejected referral and the referral in January 2023, she had been accessing support from the community dietician and CAMHS. Records indicate although there were ongoing difficulties and concerns about her eating, she had gained a little bit of weight. This indicated to the Service that O was accessing the appropriate support.
40. Good Medical practice says, ‘adequately assess the patient’s conditions taking into account their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and value… refer a patient to another practitioner when this serves the patient’s needs’.
41. Our psychiatrist adviser explained there are no national guidelines to say the Service should have responded differently to the third referral. However, their view is that when a service receives repeated referrals, alongside multiple professionals raising concerns and seeking guidance, it should prompt the service to consider things differently. Although the Service was not commissioned to manage ARFID, they felt it could have completed an ARFID assessment and then referred O on as appropriate.
42. We can see that by May 2023, O’s eating had not improved, and she presented as amber (possibly red) on the MEED risk rating scale based on nutritional intake.
43. The MEED risk rating is a framework designed to assess and manage medical emergencies in patients with eating disorders. It focuses on identifying risks such as refeeding syndrome (a shift in fluids and bod salts) and other medical complications. The ratings are green for low risk, amber for medium risk and red being high risk.
44. Our psychiatrist adviser’s view is that had the Service considered assessing O in January, it would have had more time to assess, monitor and provide support, or direct the family to an appropriate service. They note that once the Service was involved in May 2023, there is some evidence of O making some physical improvement. She was eating orally and was discharged from the paediatric ward. They explained that, had the Service been involved in the January, it could have had more of a positive impact earlier.
45. We know O was not eating, was underweight and unwell. The Service appropriately directed the family to other services, but involved professionals were expressing their concerns. We think the Service was justified to reject the first two referrals but should have considered the third referral differently. We think the Service should have intervened earlier. We will consider the impact of this later in the report.
Appropriate assessment
46. Miss A says the Service did not assess O appropriately in line with MEED guidelines at an appointment in May 2023 and did not take account of blood tests completed prior to this which indicated concerns. Miss A says the next day she took O to the ED and she was immediately admitted as an inpatient. She feels this was a near miss incident and, had she not sought urgent medical advice, O would have deteriorated further whilst waiting for the review scheduled for four weeks later. We can see how this must have been a very frightening time for Miss A and O.
47. The Trust acknowledged that at the check up in May, O presented with physical signs and symptoms indicative of her meeting the amber criteria on the MEED tool. It says patients who fall into the amber category would usually be referred for consultation with a medical or paediatric specialist for review or referred to the ED. The Trust acknowledged there is no evidence this happened.
48. The Trust has apologised for this and explained it has made service improvements in this area. It assured Miss A that all staff would complete refresher MEED tool training, and it will keep a training log for assurance that all staff have access to and have completed the training.
49. MEED guidance says, ‘when a patient presents as amber or red on the MEED tool, it indicates high concern for risk to life. In such cases the following actions should be taken: … referral for specialist assessment: if the risk is high the patient should be referred for a specialist assessment to evaluate the severity of the eating disorder and any associated medical complication’.
50. We can see from the records that O presented at the appointment as amber (possibly red) on the MEED scale based on nutritional intake.
51. We asked our psychiatrist adviser what action the Service should have taken at this point. They said O presented as ‘at risk’ on this tool. They explained the Service should have considered this, alongside her clinical history and that it would have been the right course of action to have her admitted onto the paediatric ward at this point.
52. Considering guidance and our clinical advice we consider the Service should have admitted O into hospital following this assessment.
Feeding plan
53. Miss A says once O was admitted to hospital, she received poor treatment, particularly in relation to feeding plans. She said the feeding plan was changed, as well as changes in doses over short periods of time and the plans did not account for O’s additional needs and processing issues. She says this caused O significant distress.
54. The Trust says the clinical decision to change O’s feeds were based on her physical presentation. It explained gradual changes to feeds can be considered and made when a child or young person’s weight and physical health is stable. It explained that on a particular day O’s physical presentation showed she was dehydrated, therefore as well as giving O intravenous fluids, the Service took the decision to make changes to O’s feed to ensure her physical health was not compromised further.
55. The Trust says all changes were done in discussion with O’s parents. It says O’s feeds were condensed to three times a day due to the distress the frequency of feeds was causing O.
56. The Trust investigation concludes the Service considered O’s additional needs throughout, but there was a deficit in the recording of how the Service recorded what reasonable adjustments were made.
57. MEED guidelines set out the necessary plan for the amount and frequency of feeding calculated in terms of calories required.
58. ARFID is not currently recognised as a standalone eating disorder within the NICE guidelines NG69 which covers eating disorders in children and young people. NHS England was expected to publish updated guidance for ARFID in 2023, but this has been delayed indefinitely and there is no confirmed timeline for its release.
59. We can see from O’s records that the dietician attended the ward in May 2023 to discuss changes to O’s feeding regime. The records show O was dehydrated. They also indicate O was finding the frequency of feeds distressing. We can also see discussions with Miss A about reducing the frequency and changing the supplement.
60. We asked our psychiatrist adviser if they were able to comment on whether the feeding plan was appropriate, given O’s additional needs. They said it is evident from records the Service and dieticians were following the approach as set out in MEED guidelines. They said on a paediatric ward the focus is on physical stability through weight and blood test monitoring. It is essential to ensure the child has adequate and consistent nutritional rehabilitation.
61. They highlight the gap in terms of guidance and commissioned services for people with disordered eating and ARFID and consider the Service was following guidelines in relation to the eating disorders it is commissioned to treat. However, they refer to MEED guidelines which say services should consider the involvement of a specialist in autism when supporting a person with autism and forming an eating plan.
62. We can see little evidence in the records to indicate the Service considered O’s sensory needs to manage her anxiety around feeding.
63. Our dietician adviser said children with autism and ARFID process and see information differently. They acknowledged the lack of NICE guidelines but refer to the PEACE pathway. They said it is a dietician’s responsibility and duty to seek support if unsure of the clinical situation to support a patient’s need.
64. They said there is guidance and research around managing feeding of children with neurodiversity. They recognised children with autism are sensitive to change including things like an increase or decrease in feeds and change of consistency. They considered it is essential to consider these factors to minimise the risk of increased distress and anxiety.
65. Our adviser also explained it is important to listen to and involve families because they can have a good understanding of the child’s specific needs, sensitivities and triggers. Changes in feeds may increase anxiety and could result in the children refusing even more to eat food.
66. We think the Service should have considered O’s neurodiversity more within the feeding plans. We realise the lack of guidance around ARFID specifically but understand MEED guidance and guidance relating to autism indicate the need to consider this within a feeding plan and to involve a specialist to support this.
Threat of admittance to Tier 4 service
67. Miss A says the Service considered O should be admitted under Tier 4 services. Tier 4 provides inpatient care for young people with severe mental health services such as eating disorders.
68. Miss A says the family did not agree with this approach because they believed it would negatively impact on O because of her autism. Miss A said this view was supported by other professionals in a Care Education and Treatment Review (CETR) meeting. A CETR meeting brings together the family, healthcare and other support staff to discuss the treatment of a child or young person with learning disabilities or autism to ensure they receive the right care and support.
69. Miss A says, despite this, the Service maintained O should be admitted under Tier 4, rather than being discharged with an NG tube in place. She says the Service threatened them with court proceedings if the family disagreed. She says the Service made these threats in front of O, which has caused her ongoing trauma.
70. Miss A is unhappy the Trust’s response does not acknowledge this, but rather says it sought advice from tier 4 services as opposed to considering it as the best option for O.
71. The Trust acknowledged that the recommendation from the CETR in July 2023 was that a Tier 4 admission was not in O’s best interest.
72. It says the Service had expressed wanting to make a referral to Tier 4 for the purpose of advice. It says it was not recommending admission at this time. It explains it is usual for the Service to consult with Tier 4 services in complex cases and ask them to complete assessments and consult with them to obtain an opinion or recommendation on future care planning.
73. NHS England service specification sets out the importance of treating children and young people in the right place at the right time. It says there needs to be clear pathways for community based care, including intensive home treatment where appropriate, to avoid unnecessary admissions to inpatient care. However, it recognised the need for intensive and specialised inpatient care for some people.
74. The Mental Health Act (1983) identifies people detained under this Act need urgent treatment for a mental health disorder and are at risk of harm to themselves or others.
75. We can see from the records in May 2023, staff had a conversation with Miss A regarding NG feeding. The notes says if O continue to decline all feeds, then Miss would either need to give consent or the Service would need to consider referring to The Mental Health Act. We can see a further note stating staff should seek advice regarding The Mental Health Act to ensure O was fed.
76. O’s records show that the CETR meeting was held in July and a discussion was held around a possible admission. We can see Miss A expressed her view that this was not appropriate for O, and the consensus of the meeting was that an admission would not be in O’s best interests.
77. We asked our psychiatrist adviser if it was appropriate for the Service to consider Tier 4 services at this time, in light of O’s presentation, engagement, test results and views of other professionals.
78. Our adviser felt it was appropriate for the Service to consider Tier 4 services as an option. They said if a young person has an eating problem that cannot be safely managed at home, in the community or in a hospital, then Tier 4 services need to be considered. This is particularly the case if treatment needed is beyond the parental zone of control, such as intrusive treatment or NG feeding.
79. Our adviser gave their view that it was appropriate for the Service to challenge the decision for O to go home with a NG tube in place.
80. MEED guidelines say an NG tube should be a short-term, transient plan with an exit plan in place. This is because there is concern that once it is in place, it could prompt a reliance on it which could impact on a progression to oral feeding.
81. Our adviser felt this could be particularly apparent in a person with autism because they may struggle with the change of moving on from an NG tube and may find the process anxiety provoking. This could also trigger further demand avoidance which could result in NG feeding for longer than necessary.
82. Our adviser identified the private company who had completed the ARFID assessment steered the plan for discharge with the NG tube in place. They said ARFID services consider an NG tube can be beneficial. The Service was not an ARFID service and therefore it was appropriate for them to challenge this view in line with guidelines. The Service, as an NHS organisation, would not be able to support this plan.
83. They also said there is no evidence from the records the Service was pushing for an admission to Tier 4 services. They were seeking advice through a professional consultation, and such discussions were appropriate. They say a ‘Form 1’ referral would need to be completed and there is no evidence of one in the records. A Form 1 is a document which a managing authority will complete (like a hospital) when it considers a person lacks capacity regarding care / treatment options.
84. We think it was an appropriate course of action for the Service to consider Tier 4 services and to hold discussions around this.
Complaint response
85. Miss A complains about the complaint response from the Trust. She says the response has inaccuracies in it. She says the second response contradicts the first response regarding O’s medical presentation in May 2023. She thinks the investigation was not transparent or robust and the response letter reflects what the Service wants to share rather than acknowledging what happened and any failings.
86. Our complaints standards expect organisations to be thorough and fair when looking into complaints and to respond promptly and openly. They say organisation should support and encourage staff to be open and honest where things have gone wrong or where improvements can be made, and staff should give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.
87. We realise Miss A remains unhappy with the responses from the Trust and does not feel it answered the complaint honestly and transparently.
88. We are sorry to hear Miss A feels the Trust did not do enough to rectify her complaint and understand how frustrating this is.
89. We can see Miss A complained in July 2023. The Trust completed an investigation in which it explored and provided a response for all the 19 points in Miss A’s complaint.
90. It set out an action plan with learning from the complaint including the improvement of communication, refresher training of the MEED tool and improvements around record keeping (particularly in relation to reasonable adjustments).
91. Miss A made a further complaint, to which the Trust provided a lengthy response, again addressing the points she has made. It apologises for her experiences and any misunderstanding and failures in communication.
92. We consider the Trust has dealt with Miss A’s complaint in line with NHS complaint standards. If there were any inaccuracies made in the Trust’s responses, they have now been addressed. We have investigated the complaint and independently looked at the issues complained about.
Impact
93. Our investigation has shown the Service should not have rejected the third referral to its service made by O’s GP in January 2023.
94. We asked our psychiatrist adviser about the impact of the rejected referrals. They said it was evident by May 2023, O’s eating had not improved and she presented as at risk on the MEED scale. We are of the view, had the Service considered assessing O in January, it would have had more time to assess, monitor and provide support or direct the family to a relevant service. We consider had the Service been involved earlier, it could have had a more positive impact earlier.
95. We can see O made some improvement once the Service was involved and think the Service could have had a more positive impact earlier. We do not know for certain whether O may have deteriorated anyway, even with involvement, but we feel there was a missed opportunity for a better clinical outcome.
96. We asked our psychiatrist adviser about the impact of the failure of the Service to assess O appropriately in line with MEED guidelines in May 2023. We have seen O presented at hospital three days later with dehydration and blood abnormalities. Our adviser said the Service should have taken action at the appointment in May because the MEED tool indicated risks for O. It would have been appropriate to admit her at this point.
97. They explained it is not possible to conclusively determine what the clinical impact was of the delay of three days between this appointment and O’s attendance at the ED. They said these symptoms might have been present anyway, but timely management of such symptoms is critical.
98. From the evidence we have seen, we think the Service missed an opportunity to ensure O was in the best possible setting with the best possible care options at this time to support her worrying presentation and clinical issues.
99. We can also link this incident to the further worry and distress Miss A reports. O was very unwell, and Miss A believed her daughter’s life was at risk. This must have been a very alarming situation for her, made worse when no intervention was provided, and the next appointment was scheduled for four weeks later.
100. We asked our dietician adviser about the impact of the feeding plan. They identified the failing to fully consider O’s additional needs within the feeding plan, would likely have caused further anxiety and distress for O. They said it might also have contributed to a further reluctance on O’s part to feed.
101. They said the necessity for the continuation of tube feeding cannot be wholly attributed to the feeding plan. They identified the lack of information about ARFID and why some children suddenly reject food, although there is the view this can be connected to sensory overload.
102. We can see O was unwell and not eating properly for some time, prompting the referrals to the Service. We understand the Service was not commissioned for a child with ARFID and realise the lack of guidance and information available about this disorder.
103. Our view is that the Service missed opportunities to provide O with the clinical support she needed to manage her eating disorder with due consideration of her additional needs.
104. We think Miss A’s experience with the Service likely impacted significantly on her emotional wellbeing. We can understand Miss A was terrified for her daughter and was concerned about the risk of death. We can also link O’s experiences under a service which was not designed to meet her needs with an impact on her emotional wellbeing.
105. We think acceptance into the Service earlier, appropriate assessment in May 2023 and a feeding plan which more adequately considered O’s additional needs would have prevented the level of distress and anxiety which both Miss A and O say they have experienced.