Inappropriate diet and medication
31. 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 the Trust acted wrongly when managing X’s diet and medication needs.
32. The Trust admitted X to hospital in February 2022. Ms A told us the Team did not take account of X’s additional needs, including her diagnosis of ARFID, when managing X’s diet. She said the Team added supplements to X’s food which she was hyper aware of. This meant X was reluctant to follow the diet plan, and it also led to vomiting. Ms A said the Trust discharged X on a feeding plan that was not appropriate for X, leading to a drop in weight.
33. In May 2022 the Trust readmitted X due to the X’s drop in weight. The Trust inserted an NG tube. Ms A said the Team put a feeding plan in place for X which involved a particular oral supplement. Mr A said she told the consultant this type of supplement did not agree with X, but the consultant did not listen to her. She explained from experience, she was aware of different food supplements and X’s negative physical response to them. She said the Team did not listen to her. She considers this led to X having severe vomiting, dehydration and weight loss.
34. Ms A said she was so concerned she asked the Team to stop using the supplements and rather use dairy milk in the feed. She said the consultant reluctantly agreed and X improved on this diet.
35. Ms A said throughout this admission, the Team experimented with different feeds with negative effects. She said X’s attitude towards eating deteriorated until the point she would not eat at all.
36. During X’s September admission, Ms A told us the Team changed X’s feeds numerous times, at one point back to the supplement X could not tolerate. She said it also tried dairy feeds which X struggled to tolerate. She said X became dehydrated and malnourished on several occasions. She described X as lethargic, weak, drooling, with headaches and in pain.
37. In its response, the Trust said the Team spent long consultations with Ms A which are documented, trying to agree on different products to meet X’s needs. The consultant said each consultation took between 45 minutes to an hour and a half (a usual gastroenterology appointment being 30 minutes). It said the consultant spent this time listening to Ms A’s concerns and trying to formulate a plan for X in her best interests.
38. The Trust said the Team had originally recommended trying X on a dairy free diet to try and address the vomiting. It said Ms A rejected this plan at the time because she did not want X excluding dairy from her diet. It said Mr A pushed for them to use full fat cow’s milk which the Team had not used before with the supplement. Later, Ms A questioned its use of dairy milk.
39. The Trust’s view is the constant negotiations with Ms A around X’s diet and feeds impacted on X’s care.
40. BNFC guidance says, ‘every effort should be made to optimise oral food intake before beginning enteral tube feeding; this may include change of posture, special seating, feeding equipment, oral desensitisation, food texture changes, thickening of liquids, increasing energy density of food, treatment of reflux or oesophagitis, as well as using age-specific nutritional supplements’.
41. We asked our gastroenterologist adviser if they considered the Team put appropriate feeding plans in place for X.
42. They identified according to the nutritional screening assessment STAMP, X was at risk of malnourishment. STAMP is a recognised screening tool in paediatric care. They said records indicate the Team was working collaboratively with their dietetic team to address this concern and help X put on weight so she could undergo surgery safely.
43. We can see from clinical records, the purpose of X’s first admission in February 2022 was to intensively record and increase X’s oral intake with oral nutritional supplements (ONS) to her drinks and food. ONS are ONS are products used to boost calorie and nutrient intake for people at risk of malnutrition. Our adviser said this is recognised as a good standard of care.
44. We can see X was drinking dairy based full fat milk during this admission. Our gastroenterologist adviser noted she gained 1kg during her admission of three weeks, compared with 1kg in four months at home prior to admission.
45. We can see the Trust discharged X with a feeding plan in place.
46. In May 2022 the Trust readmitted X. There were concerns about increased vomiting. X had lost 1kg since her discharge.
47. The Trust carried out an endoscopy because of the vomiting. It did not indicate sign of oesophagitis (an inflammation of the food pipe that can cause vomiting).
48. At the same time the Trust inserted a nasogastric tube (NG tube). This is a thin tube passed through the nose and into the stomach for feeding administration).
49. We can see from records X had multiple small vomits on her feeds and her eating declined.
50. Our gastroenterologist adviser said this reaction is not uncommon because X was not used to NG feeding. They considered it was appropriate to add NG feeding to the plan because L was not able to take sufficient oral supplementation to sustain adequate weight gain.
51. It is evident from the records various feeds were trialled to see if X could tolerate one better than another. Our gastroenterologist adviser felt this was appropriate due to the need for X to gain weight. They explained the choice of feed is individualised to the patient’s needs with consideration of dietary history for example specific allergies, digestive illnesses or cultural reasons.
52. We know X was experiencing unexplained vomiting and also has a diagnosis of ARFID. Factors which were impacting on her ability to tolerate and manage feeds.
53. Good Medical Practice point 31 says, ‘you must listen to patients, take account of their views and respond honestly to their questions’.
54. Records indicate Ms A suggested using a dairy milk in X’s feed. Our adviser said whilst it is not necessarily common to mix dairy milk with the feed, the Team agreed to trial this in a further attempt to provide X with sufficient nutritional calorie intake. Dairy milk alone would not have been adequate, so the supplement was essential.
55. At the beginning of June 2022, the Team tried feeding without dairy milk in it. Clinical notes indicate X continued to vomit and became dehydrated. Following a dietetic review, the Team returned to using dairy milk with the supplement. Clinical notes suggest parents were happy with this plan.
56. Later that month, at the discharge review, notes indicate X was tolerating this feeding plan.
57. We can see that during X’s August admission, the team continued to supplement the feed with dairy milk. There was a discussion about the percentage of supplement and milk mix. Ms A was concerned that X was not tolerating a 50/50 mix.
58. At the beginning of October 2022, clinical records indicate X had lost weight and was severely dehydrated. At the end of the month the Team held discussions about trying other options, but they agreed X appeared to tolerate the feed best when mixed with dairy milk.
59. At the beginning of November 2022 notes show Ms A questioned if the Team should trial a dairy free feed. They Team felt at this point the vomiting could be due to the X’s stomach position because of the scoliosis.
60. In December 2022, the Team agreed to move to a strictly dairy free diet. By the time of discharge at the end of the month, notes indicate X was doing well on a dairy free diet. Ms A questioned why the Team had persisted with the dairy milk diet for so long.
61. Our adviser said it was appropriate to trial different feeds over the admissions. They said there is no specific guidance around feeding plans but to was appropriate to trial different regimes in order to support X to gain the essential weight.
62. We can also see the Team spent time in discussion with Ms A and listening to her views. The Team started the dairy milk mix after listening to Ms A. This is in line with Good Medical Practice, which states patient’s wishes and concerns should be listened to addressed.
63. We appreciate why Ms A was so concerned about the feeding plans. It is evident X was struggling to tolerate feeds and became unwell and dehydrated during her admissions. This must have been very distressing for X and Ms A.
64. We know X was malnourished according to the STAMP screening tool and needed to gain weight to undergo essential surgery safely. We understand the need for the Team to support this. We think the Team acted appropriately with regards to trialling different feeding plans for X, with consideration of Ms A’s views.
65. Ms A has also told us the Team over medicated X with laxatives and anti-sickness medication. She said this led to X soiling herself and becoming distressed.
66. Ms A said X was prescribed a medication called alimemazine. Alimemazine is an antihistamine used to treat allergic reactions and sleep disturbance. It can be used to help managed nausea because its sedative properties can provide relief from sickness and retching. Ms A said this caused X to go into a trance-like state and to be immobile.
67. Ms A was also concerned about another medication the team prescribed to X called domperidone. Demperidone is a medication used to treat nausea and vomiting. Ms A said this medication can cause heart issues. This concerned her because X has heart issues.
68. Ms A considers if the Team had provided X with an appropriate diet, it would not then have had to prescribe her anti-sickness medication to manage the impact of the feeding regimes.
69. The Trust does not consider X was overmedicated during her admissions. It said the Team tried different medications after gastroenterology multi-disciplinary team meetings, as well as seeking advice from other gastroenterologist at other centres as Ms A requested.
70. The Trust said it is necessary to try medications and monitor side effects and effectiveness. It said any trials of medication were done after full discussion with and the agreement of Ms A.
71. It is evident from records X’s post-operative recovery was long and challenging. She continued to experience vomiting. We can see the Team sought advice from another Trust who advised trying Alimemazine. It does not appear this was effective.
72. We can see from the discharge summary X suffered with gastro-oesophageal reflux (when stomach acid flows back up into the oesophagus causing heart burn, chest pain, swallowing difficulties and regurgitation) and constipation.
73. Our gastroenterologist adviser told us both conditions are common for individuals with scoliosis both pre- and post-surgery.
74. BAPEN guidelines support the use of medications to help improve the ability of NG feeding if constipation is presenting as an issue.
75. Our gastroenterologist adviser explained constipation can reduce a person’s desire to eat. They felt with was treated appropriately with Movicol and sodium picosulphate. We can see in the records during the third admission a note which says,’ ‘X feels a lot better since having her bowels open’.
76. We can also see a point when X was having frequent loose watery ‘type 7 stools’. Our gastroenterologist adviser felt the treatment was appropriate, but the Team could have reviewed it further at this point.
77. Good Medical Practice point 16 says,
‘in providing clinical care you must: a. prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient’s health and are satisfied the drugs or treatment serve the patient’s needs b. provide effective treatment based on the best available evidence c. take all steps to alleviate pain and distress whether or not a cure may be possible e. consult colleagues where appropriate’.
78. As discussed, we can see the Team were trying to find a feeding regime that would work for X. They continue to trial different regimes in terms of both feeds and medication. From what we have seen in the records, and from the advice we have obtained, we consider the Team were trying to balance the feeds with the medication to help X retain the calories she required to gain weight.
79. Again, we understand why Ms A was so concerned. Her daughter was unwell and was responding poorly to her feeding and medication. It was undoubtedly distressing to witness, and it is understandable why she was questioning X’s care.
80. Overall, we consider the Team acted in line with above GMC guidance. They continued to assess X’s needs in terms of feeding and medication, they held regular discussions amongst themselves and with both parents about her care, they prescribed medication in efforts to meet her needs and sought advice from other colleagues.
PEG feeding
81. In September 2022 X had gained enough weight to undergo surgery for her scoliosis surgery.
82. X remained in hospital following surgery. Notes indicate she was struggling to tolerate NG feeding and was continuing to vomit frequently
83. In October 2022 the Trust carried out surgery to fit X with a PEG.
84. Ms A said this was not the route she wanted to go down, however, she felt she had no choice but to agree and consent. She said X had lost some weight and the consultant blamed Ms A for this, rather than understanding the impact of X’s additional needs.
85. In November 2022, the Trust transferred X’s care to another consultant who supported a dairy free option for X. X was weaned off the TPN and was discharged in December. X continues to be fed via the PEG.
86. Ms A considers the treatment and care provided by the Trust has led to X’s permanent reliance on a PEG. She said when X was first admitted to hospital she was eating orally, but the feeding regimes and intervention by the Team have impacted on her ability to this due X’s fear of vomiting.
87. The Trust said the Team consider that a PEG was the most safe and appropriate way to ensure X’s nutritional needs were met. It said X was dependent on artificial feeding to improve her weight and there are risks with an NG tube feeding which are not present or are reduced with a PEG.
88. The Journal of paediatric gastroenterology and nutrition says it is recommended, ‘the indication for a PEG be individualised, and that the decision for PEG insertion is arrived at by a multidisciplinary team having considered all appropriate circumstances. Well timed enteral nutrition is optimal to treat faltering growth to avoid complications of malnutrition and body composition’.
89. We can see from X’s medical records, the Team tried different feeding plans and tried to support X to tolerate feeding orally. In October, it is evident the Team remained concerned about X’s weight and her nutritional needs. Following a multidisciplinary meeting, we can see the Team agreed the safety way to ensure X’s nutritional needs were met was to move to PEG feeding.
90. We have seen a consent form signed by Ms A with regards to the PEG being fitted. The form lists possible complications such as pain, infection, bleeding and blockage. We cannot see in the records, specific discussions between the Team and Ms A about the PEG. The consent form suggests Ms A was made aware of any complications.
91. We asked our gastroenterology adviser whether it was appropriate for the Team to move on to a PEG at this point, given X had already undergone the surgery.
92. Our gastroenterology adviser said it is common practice to move on to a PEG insertion in patients in whom long term artificial feeding dependency is expected. X remained at a concerning weight, and her nutritional needs were not being met. They added often people are more comfortable to eat orally again without an NG tube present.
93. They explained that a PEG can be preferable because it mitigates the need to reinsert NG tubes which can be traumatic for the patient. Additionally, overnight feeding at home is possible with a PEG, which is not so possible with NG feeding. They said overnight feeding via a PEG can support oral eating during the day. Their view was that had Ms A not wanted the PEG insertion, the option would have been to continue with the NG feeding.
94. We realise how upsetting and worrying this whole process was for Ms A. She needed to make decisions about her X’s wellbeing and essential health needs. These cannot have been easy decisions to make. We understand why she may question the advice and actions of the Trust. We consider Ms A did consent to this procedure and it was reasonable step for the Team to take in X’s best interests.
TPN tube
95. In November 2022, X’s continued to be underweight and there were still concerns about vomiting. The Team made the decision to move to total parental nutrition (TPN).
96. Ms A said this tissued several times. She said the line got blocked on several occasions and staff blamed X for pulling it out. Again, not understanding X’s additional needs. Ms A said the Trust had to insert lines which caused X further distress.
97. Ms A said the insertion of the tube has caused permanent damage to X’s arm, specifically axially venous thrombosis. This is a blood clot in the vein in the underarm area. She said X will need to take medication for this long-term, and believes it is a life-threatening condition.
98. Ms A said she felt pressured to consent to this and was not aware of the risks.
99. The Trust said the Team considered it was necessary to move onto TPN to ensure X’s hydration and nutrition. It said the Team had tried various methods of feeding, it did not want to force feed X against her will. It said it had tried many ways to get both Ms A and X onboard, and felt it was necessary to go down the TPN route.
100. NICE guidelines say, ‘enteral tube feeding [e.g. PEG or NG] has a role in both short-term rehabilitation and long-term nutritional management in paediatrics… tube feeding should be considered in the following situations …weight loss or no weight gain for a period of three months’.
101. The clinical records indicate X’s vomiting increased initially after surgery. There are a number of nursing notes and consultant discussions documenting concerns around vomiting and dehydration. The feeding regimes were discussed and altered during this time.
102. In November we can see dietician notes about further weight loss and concerns.
103. In that month we can see a tube was inserted for TPN feeding. We cannot see discussions recorded in direct relation to this. We can see Ms A signed a consent form for the line to be fitted.
104. We can see TPN fluid charts where it is documented X was ‘refusing to cooperate, bending arm’ and another one which is says X was ‘refusing to straighten her arm’.
105. We asked our adviser whether it was appropriate for the Team to move to TPN feeding. They explained TPN is used to ensure nutritional needs are being met when enteral routes are not providing sufficient calorie repletion. They said it was evident from the records X remained severely underweight and was not tolerating other feeding mechanisms, it was appropriate for the gastroenterology team to consider TPN to ensure X’s essential nutritional needs were being met.
106. Our adviser said there is no specific guidance which informs what feeding methods a gastroenterology team should use or move to. In line with GMC good medical practice guidance point 16, we can see there are numerous records relating to discussions about the issues, there is communication between the consultant, the nurses and the dieticians. We consider the Team acted in line with good medical practice when considering X’s physical health needs.
107. We are unclear if the Team adequately explained any risks related to the insertion of a line for TPN feeding. We consider this to be a shortfall. However, we can see Ms A signed a consent and we are not able to say whether she would have signed the consent or not had further discussions been held. It is evident X was unwell, losing weight and her nutritional needs were not being met. We understand it was appropriate for the Team to move to TPN feeding at this point.
108. We are sorry X has developed axially venous thrombosis. We understand this is a risk when a line is inserted for TPN. We are glad this is being managed through medication and understand it is not a life-threatening condition. We hope it does not cause L pain.
Additional needs
109. Ms A complained the Trust did not consider X’s disabilities during her three admissions. She said the Trust failed to provide adequate psychological support to X to help her navigate her admissions and treatments. She said the ‘Ask, Listen, Do’ principles were not followed. These principles set out how staff can do things differently so people who have a learning disability or are autistic get their right to high quality, safe care and equal access to services.
110. Ms A referred to the first admission. She said X additional needs were not considered with regards to feeding. She said X was forced to sit and eat without any distraction. She said X was labelled as naughty or playing up.
111. Ms A said X was discharged on an eating plan but continued to vomit. She said the Team did not consider the impact of ARFID and suggested X was doing it on purpose.
112. She said X repeatedly showed signs and behaviours of distress which were ignored.
113. The Trust said X’s additional needs were supported whilst she was admitted. It said she received support from a play therapist to provide activities and distraction. X brought items in from home such as soft toys, bedding that made her feel comfortable.
114. It said it made a referral to the children’s mental health service with regards to X’s eating difficulties and anxiety. There is not an ARFID service in the area where X lives.
115. The Trust added the consultant is a lead for the ARFID service in another area and has significant experience of working with autistic children with ARFID. The Trust considers it exhausted every means of trying to engage Ms A and X using the multi-disciplinary team (MDT) including the play therapists on the ward.
116. The Trust says the Team made many adjustments for X during three separate admissions. It says even when feeding plans that worked were put in place after the first admission without NG Tube which was agreed by both parents, this was not sustained at home. After the second admission and a feeding plan was then agreed via NG Tube the weight gain again was not sustained on discharge. It took the third prolonged admission for X to gain enough weight to be able to undergo surgery.
117. We asked the Trust whether there were specific policies or guidance in place at this time with regards to supporting children with additional needs in the hospital setting. It has not provided anything.
118. It said X has alerts on her electronic file that she has autism and a learning disability. Since 2024, X has had a hospital passport. A hospital passport is a document that helps patients with complex needs communicate their preferences and needs during hospital stays. We note this was completed after X’s admissions.
119. The Equality Act (2010) states all organisations including health and social care such a hospitals and GP surgeries mut make steps to remove the barriers individuals face because of disability.
120. NICE guidance CG170 talks about the importance of making adjustments to the social and physical environment and processes of care when supporting a child with autism for example providing visual supports, considering individual sensory needs, and making adjustments to the processes of health care such as providing a single room.
121. We can see X is described in records as having autism, ARFID and global developmental delay. We can see from her records, she attends a special school. We have seen a note documented that education staff did not consider X had the mental capacity to write her feelings on post-it notes. This suggests X had significant learning needs.
122. We can see notes in the records that say X had ‘daily routines included as at home’ and that there was a promotion of normality’.
123. We have seen notes that suggest staff discussed X’s likes and dislikes with Ms A and X. We have also seen notes referring to X’s behaviours such as refusing to straighten her arm, not wanting to be weighed, pushing away staff, hitting her mother, needing a lot of reassurance. There does not appear to be regular mentions of her autism and global delay or any reflection on the relationship between these diagnoses and her behaviour.
124. In November 2022 notes indicate Ms A asked the Team to transfer X to a side room which was not possible at the time. There are other entries which refer to moving X to a separate bed space. It is not clear from the records if this was to do with allowing reasonable adjustments in terms of the physical environment, for X to be in a less stimulating place.
125. We know X underwent several invasive procedures. We cannot see in the records that her additional needs were considered, or any reasonable adjustments were made to support her through these processes.
126. The Trust referred to a hospital passport which it completed with X in 2024 after her admissions.
127. The NHS England guidance about health and care passports was implemented in June 2024. This guidance is focused on people with a learning disability and autistic people and states health passports facilitate shared decision making and patient safety.
128. X would likely have benefited from a hospital passport during her admissions to ensure her additional needs were considered. Unfortunately, her admissions pre-date this guidance. The Trust implemented health passports the year the guidance was implement so we cannot say there are indications of failing with regards to this.
129. We asked our mental health adviser if they considered the Trust did enough to consider and support X’s autism and learning needs during her admissions.
130. They said X would have needed predictability and routine during her hospital stay. They felt overall the care was supportive and tailored to her individual and medical needs. They commented that the clinical records do not reflect staff have considered other specific/reasonable adjustments (other than the ones noted) in consideration of her autism diagnosis.
131. They noted the Trust said there are now alerts on X’s electronic file that is autistic and has a learning disability. However, they said the reasonable adjustment flag was only introduced in September 2023 and therefore was not a recommendation at the time of X’s admissions.
132. We also asked our mental adviser whether they considered the Trust’s response to X’s ARFID diagnosis appropriately.
133. The Royal College of Paediatrics information about ARFID talks about adjustments that might be helpful for people with ARFID including eating in peaceful environment, allowing flexibility around mealtimes, helping the person to explore food and allowing them to do other things whilst eating.
134. We can see medical staff regularly documented X to have an ARFID diagnosis. Our adviser said they could see dietician included some of the recommendations from the Royal College of paediatrics information about ARFID within X’s care plans.
135. This information was published in December 2022, the month X was discharged from her third admission. We are pleased the Team was already implementing some of the recommendations. We cannot have expected them to have done so prior to its publication.
136. It is evident that X was upset and distressed during her admissions at different points. The clinical records, Ms A’s complaint and the Trust responses all indicate a history of significant parental conflict. In February 2022 Ms A reported X to be anxious about her father, in May 2022 X is described as ‘low in mood’ and Ms A shared she had a history of vomiting associated with anxiety’. The consultant noted in that month, ‘with increased stress X vomits very readily’. In September 2022 the spine surgery team wrote, ‘X’s mood may be contributing to weight loss via nausea and vomiting’.
137. There are notes which describe X as ‘happy’. Overall, it appears X had emotional needs which likely related to her experiences in hospital as well as her home life experiences.
138. In February 2022, a clinical note indicates Mr A requested a referral to the children’s mental health service. The records suggest this referral was only initiated in November 2022. It is not documented why there was a delay in this referral.
139. However, we can see the Team were considering X’s needs to some degree from the end of 2021, when it made recommendations for a referral to play therapy. The Trust’s response also indicates X had been under the care of the psychology team for a prolonged period of time (and continues to be so).
140. We do not underestimate how traumatic this year was for X. She underwent significant procedures, was in and out of hospital away from her parents and she had to manage this with autism, ARFID and additional learning needs. We understand she continues to feel distressed by her experiences. We also realise how upsetting and worrying this whole experience was for Mr A.
141. Overall, we consider the Trust acted in line with guidance at that time, and did what was required to ensure X gained weight to undergo essential surgery, and thereafter to ensure her nutritional needs were met.
142. We think it did consider X’s additional needs throughout. Since X’s discharge further guidance and research has been published in relation to supporting people through the health care system who have diagnoses of autism and ARFID. These were not in place at the time of X’s admissions. We are glad to see the Trust followed guidance by implementing a hospital passport and an alert system as guidance was initiated.
143. We sincerely hope X gets the ongoing psychological support she needs, and her health and wellbeing improve.