Allergies
20. 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.
21. Mrs A complains the Trust should have tested for non-IgE food allergies sooner.
22. Allergy UK says a food allergy is when the body’s immune system reacts unusually to specific foods. Most children who have a food allergy will have experienced eczema during infancy. The worse the child’s eczema and the earlier it started, the more likely they are to have a food allergy. Non-IgE-mediated food allergies refer to allergic reactions that occur without involving Immunoglobulin E (IgE) antibodies.
23. NICE guidance [CG116] says ‘Food allergy can be classified into IgE-mediated and non-IgE-mediated allergy. IgE-mediated reactions are often immediate and frequently have a rapid onset. Non-IgE-mediated reactions are generally characterised by delayed reactions.’
24. The NICE guidance also says:
• ‘If food allergy is suspected (by a healthcare professional or the parent, carer, child or young person), a healthcare professional with the appropriate competencies (either a GP or other healthcare professional) should take an allergy-focused clinical history tailored to the presenting symptoms and age of the child or young person.’
• ‘Based on the results of the allergy-focused clinical history, if non-IgE-mediated food allergy is suspected, trial elimination of the suspected allergen (normally for between 2–6 weeks) and reintroduce after the trial. Seek advice from a dietitian with appropriate competencies, about nutritional adequacies, timings of elimination and reintroduction, and follow-up.’
25. The clinical records say that when O attended A&E on 29 August 2023, the doctor noted their GP was managing them for suspected cows-milk protein allergy and had started Nutramigen formula two weeks earlier. The doctor diagnosed O’s rash as eczema and prescribed hydrocortisone cream and an emollient. They advised Mrs A to complete four weeks of Nutramigen, and for their GP to do a milk challenge following the four weeks to confirm whether O had a non-IgE cow’s milk protein allergy. The doctor said if the diagnosis was confirmed, O’s GP should refer to the dieticians for advice.
26. On 20 September 2023, O’s health visitor referred O to the dieticians, but that referral was rejected because the diagnosis of non-IgE cow’s milk protein allergy had not been confirmed by a milk challenge.
27. On 16 October 2023, the children’s hospital at home team referred O to a dietician as they still had gastrointestinal problems despite being fed Nutramigen for two months. The next day, the dietician advised that O’s formula should be changed to an amino acid feed such as Neocate and their GP monitor their symptoms. The dietician said once the diagnosis was confirmed O’s GP could refer them to its service.
28. On 23 October 2023, O’s GP confirmed the diagnosis of a cow’s milk protein allergy. On 25 October 2023, O’s GP recorded their symptoms were starting to resolve with Neocate formula. On 30 October 2023, O’s GP referred them to the Trust’s paediatric dieticians.
29. On 22 November 2023, Mrs A took O to the paediatric dietetic clinic for an assessment. The dietician advised Mrs A to concentrate their Neocate formula and how much formula O should have each day. The dietician also advised O’s GP to continue the prescription of Neocate until O was one year old, and they planned to review O again in one months’ time.
30. Our paediatric adviser told us there are no blood or skin tests which are useful in the diagnosis of a non-IgE mediated food allergy, unlike an IgE mediated food allergy. They said diagnoses must be suspected on the history and confirmed by observing that the symptoms improve when the suspected food is removed from the diet and return when the food is reintroduced into the diet.
31. On each occasion O attended hospital, the Trust took an allergy-focused clinical history, it advised Mrs A about a change in formula and sought advice from a dietician. That treatment was in line with NICE guidance.
32. We appreciate it took a long time for O to be diagnosed, but O needed to try alternative formulas and for their parents and medical professionals to monitor their symptoms in order to confirm the diagnosis. We recognise this was a very difficult time for O and the family, and it must have been very upsetting for them to see O in discomfort.
33. Overall, we have seen no indication that the Trust got anything wrong. For those reasons, we will not consider this part of the complaint any further.
Sepsis
34. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event complained about had a negative effect which the organisation has not put right. Having done so we have found the Trust has already done enough to put right the impact of these events.
35. Mrs A complains the Trust did not know the Trust was treating O for sepsis when they were admitted to hospital on 14 October 2023. Mrs A says she found out about this diagnosis on 14 November 2023 when she received a copy of the discharge letter.
36. In its complaint response the Trust said it diagnosed O with a fever, and it provided treatment for presumed sepsis, but that diagnosis was not confirmed. The Trust has apologised that this was not explained better to O’s parents at the time.
37. The clinical records say that when O was admitted to hospital doctors queried whether O had sepsis because they had a high temperature and heart rate. The Trust provided antibiotic treatment and took blood tests to establish whether O had an infection.
38. The Trust queried the cause of the fever and diagnosed them with suspected sepsis of unknown origin as tests did not identify the source of an infection. The Trust discharged O via its children’s hospital at home scheme, and they continued intravenous antibiotics until blood cultures were negative.
39. We have not seen any evidence in the clinical records that the Trust diagnosed O with sepsis, only that it was carrying out investigations for presumed sepsis because of their symptoms.
40. That said, we have not seen any evidence in the clinical records which explains what information the Trust gave to O’s parents about their diagnosis (suspected or otherwise) , only that it gave safety net advice. Given that the Trust discharged O home on antibiotic treatment, the Trust should have ensured their parents were fully aware of their management plan.
41. The GMC’s Good Medical Practice says ‘the exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about: their condition(s), likely progression, and any uncertainties about diagnosis and prognosis, the options for treating or managing the condition(s), including the option to take no action’
42. By its own admission, the Trust has acknowledged it should have communicated O’s management plan to their parents better than it did, and it has apologised for this.
43. Our Principles for Remedy say organisations should offer appropriate remedies when things have gone wrong. That could include an apology, explanation and acknowledgement of responsibility, or remedial action. The Trust has done that and, therefore, we do not see any indications there is anything remaining for Trust to do in relation to the short-term confusion and worry O’s parents experienced as a result of the Trust failing to properly explain O’s diagnosis when it discharged them from hospital.
44. For those reasons, we will not consider this part of the complaint any further.
Antibiotics
45. Mrs A complains the Trust failed to carry out a blood test and stopped O’s antibiotics when they returned to hospital.
46. NICE guidance on antimicrobial stewardship sets out recommendations for the safe and effective use of antimicrobials (any medicine used to treat an infection). It aims to slow the rate at which antimicrobials (including antibiotics) become resistant to treatment in individuals and the public.
47. This NICE guidance says healthcare professionals should follow local (where available) or national guidelines on prescribing the shortest effective course, the most appropriate dose and route of administration.
48. The Trust prescribed intravenous antibiotic treatment to O on 14 October 2023, after they were admitted to hospital with a fever. On 16 October 2023, a community nurse visited O at home to administer their next dose of antibiotics and take a heel prick blood test to check their C-reactive protein (CRP). CRP is a marker for infection in the blood; if it becomes high it shows the body is reacting to an infection.
49. Later that day, the community nurse asked Mrs A to bring O to the paediatric assessment so a doctor could assess them given that they were irritable at home and had ongoing jelly like stools.
50. When the doctor examined O the next day, they noted O appeared generally well, was feeding well, and was alert. The records say O’s cardiovascular system was normal, their chest was clear, their abdomen was soft and non-tender, and their central nervous system appeared normal. The doctor provided a provisional diagnosis of a cow’s milk protein allergy.
51. The doctor set a treatment plan of a prescription for Neocate formula as per the dietician’s recommendation and to stop O’s antibiotics as blood cultures were negative. The doctor provided safety net advice and said O could be discharged home.
52. Our paediatric adviser said there was no clinical indication that the Trust needed to carry out a further blood test at that time or that O needed to continue antibiotic treatment.
53. We understand why Mrs A was very worried at the Trust’s decision to stop O’s antibiotics. The Trust’s decision to stop O’s antibiotic treatment was in line with NICE guidance, as they no longer had any signs of an infection.
54. Overall, we can see no indication the Trust did anything wrong. For that reason, we will not be looking into this part of the complaint further.
Investigations
55. Mrs A complains that when O was admitted to hospital on 28 November 2023, she had to push the Trust to carry out an ultrasound scan and then it changed its mind on the results.
56. In its complaint response the Trust said an ultrasound scan was not initially carried out as doctors were focusing on helping O to feed with a nasogastric tube, carrying out a radioallergosorbent blood test (a test to check for an IgE mediated allergy to cow’s milk, soy and house dust mite) and supporting O with their acute respiratory illness.
57. The Trust says it arranged an ultrasound scan following a change in consultant, as they felt O’s feeding difficulties were disproportionate to the severity of their bronchiolitis.
58. The clinical records say O was admitted to hospital on 28 November 2023 with a cough and poor feeding. A doctor examined O and found they had eczema spots around their body and a localised wheeze in their right lung. O was admitted to a ward for feeding support, and prescribed hydrocortisone cream for eczema and omeprazole for reflux.
59. The clinical records say O was unsettled during feeding, which had been ongoing since birth but had worsened recently. The doctor requested an abdominal ultrasound scan.
60. The clinical records say that whilst the first ultrasound scan showed findings suspicious for pyloric canal stenosis, a repeat ultrasound scan on 6 December 2023 showed no evidence of pyloric stenosis and a repeat blood gas test [to measure oxygen and carbon dioxide in the blood] was normal.
61. Our paediatric adviser told us that an ultrasound scan is not a routine investigation in manging faltering growth. The NICE faltering growth guidance does not recommend such an investigation.
62. They also explained that the first ultrasound scan showed possible pyloric stenosis but, this was not a condition that the Trust was considering when it requested the scan. The typical age for presentation of pyloric stenosis is below three months, and O was just over four months.
63. We appreciate it must have been difficult for Mrs A not knowing what was wrong with O and feeling there was a delay in investigations.
64. We have seen that the care and treatment the Trust provided was in line with NICE faltering growth guidelines, and GMC good medical practice guidance which say doctors should promptly arrange suitable investigations . We have seen no indication that the Trust should have carried out an ultrasound scan sooner than it did, or that it did not carry out appropriate investigations.
65. For those reasons, we will not consider this part of Mrs A’s complaint further.
Nasogastric tube feeding
66. Mrs A complains the Trust continued with a nasogastric (NG) tube feeding despite O experiencing significant distress. She says it was very distressing watching her child have NG tube feeds. We appreciate it must have been very upsetting time for O’s parents.
67. NICE clinical guideline [NG9] says ‘Give fluids by nasogastric or orogastric tube in babies and children with bronchiolitis if they cannot take enough fluid by mouth.’
68. The clinical records say the Trust began NG tube feeding because of O’s poor feeding and their chest symptoms. Staff were aware of O’s discomfort with the NG tube feeding, which is the reason they made the change from formula to Dioralyte, which they were able to tolerate.
69. Our paediatric adviser explained that the most important consideration for the Trust was keeping O hydrated.
70. As O was unable to feed properly, it was appropriate for the Trust to continue the NG tube feeds. We consider the care and treatment the Trust provided to O in line with NICE guidance. We can see no indication the Trust did anything wrong.
71. For those reasons, we will not be looking into this part of the complaint further.
72. We would like to stress that this decision is not intended to undermine O’s or their parents’ experience. Whilst the NG tube feedings were a necessary part of O’s treatment plan, we accept they can be uncomfortable and cause distress.
Consultant care
73. Mrs A complains the Trust delayed referring O for further investigation under a single consultant. She says it was frustrating for O’s parents when there was no central plan for O’s ongoing feeding issues, but their experience improved significantly once Dr S took over as the consultant investigating O’s issues.
74. In its complaints response the Trust has acknowledged that different clinicians assessed O during their hospital admissions. The Trust says it operates a consultant of the week system for in-patients, which is why O was under the care of several consultants.
75. Our paediatric adviser explained that consultant of the week is a recognised model of senior oversight, and it is commonly used to improve the continuity of care in paediatric wards. O’s transfer to Dr S, who initiated investigations in December 2023, was part of this process.
76. We appreciate that the change of consultants, and medical staff, can make communication more difficult. We acknowledge this must have been very frustrating for O’s parents who were very worried about their child’s health. For that reason, we are pleased to see that Dr S has remained the consistent consultant for O.
77. Overall, we have seen no indication that O received a poor standard of care as a result of the Trust operating the consultant of the week system. The Trust provided care and treatment to O in line with NICE and GMC guidance. We can see no indications the Trust did anything wrong.
78. For those reasons, we will not be looking into this part of the complaint further.
Discharge advice
79. Mrs A complains the Trust failed to provide a feeding plan or advice when it discharged O from hospital on 2 December 2023. She says the Trust told O’s parents that they should have wet nappies, but it did not provide a milk plan. Mrs A was understandably very worried about increasing O’s feeds because of their vomiting.
80. The clinical records show that a dietician reviewed O on 1 December 2023, and they also sent a letter to O’s GP, with a copy to their parents, on 22 November 2023. Both of these documents contain a plan for feeding.
81. The Trust did not include a feeding plan in the discharge summary. But when it discharged O from hospital, it arranged ongoing support from the children’s hospital at home team.
82. There is evidence the Trust provided advice and support, but as O’s parents feel that there was not a feeding plan, we consider that advice and support should have been better communicated to O’s parents.
83. The Trust has acknowledged O’s management plan should have been communicated clearly to their parents, and fully acknowledged this caused confusion. It has apologised for the poor communication.
84. Our Principles for Remedy say organisations should offer appropriate remedies when things have gone wrong. That could include an apology, explanation and acknowledgement of responsibility, or remedial action. The Trust has done that and, therefore, we do not see any indications there is anything remaining for Trust to do in relation to the shortterm worry O’s parents experienced from the Trust’s failure to clearly communicate O’s feeding plan before they were transferred to the ongoing care at home team.
85. For those reasons, we have decided we will not consider this complaint any further.
86. We recognise how upsetting it has been for Mrs A to feel the Trust did not care for O in the right way. We fully appreciate how difficult this time has been for Mrs A and her husband. We thank Mrs A for sharing their experience with us.