The Trust did not diagnose pyloric stenosis
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 in the Trust’s assessment of Kinglsey on 27 and 28 July 2023.
21. Miss H told us she knew there was something seriously wrong with I as early on as 27 July. She feels the Trust did not properly assess Kinglsey, otherwise the Trust would have diagnosed pyloric stenosis during this hospital admission.
22. We sought advice from our paediatric adviser to help us establish whether the Trust correctly assessed and diagnosed I during his hospital admission. Our paediatric adviser explained that the most common sign of pyloric stenosis is projectile vomiting, which I did not present with. Although he was regularly vomiting, projectile vomiting is different and very forceful in nature. There are no medical records to suggest the vomiting was forceful enough to be considered ‘projectile’.
23. The records show the Trust queried pyloric stenosis as a potential diagnosis and our paediatric adviser said it ordered appropriate blood tests. They explained how regular vomiting can lead to a depletion of sodium, potassium, and hydrochloric acid in the body. I’s blood tests showed he had a raised pH level (alkalotic blood).
24. Our paediatric adviser said that although the raised pH level result could potentially suggest pyloric stenosis, it is reasonable for the clinician to have attributed the symptoms to more common conditions such as reflux. This is because the clinician would need to consider their full assessment of I, not just the blood tests. The medical records say I was settled in Miss H’s arms and was not projectile vomiting. In addition, the Trust performed a second blood test which showed an improved result.
25. Our paediatric adviser told us the Trust’s clinician used their clinical judgement based on the assessment on I. Although not every child presents with projectile vomiting as a symptom of pyloric stenosis, it was reasonable for the clinician to consider alternative and more common diagnoses such as reflux. This is because I did not present with the most common symptom of projectile vomiting, and there was an improvement in his blood test results.
26. NG1 says forceful, projectile vomiting may suggest pyloric stenosis. It also lists several ‘red flag’ symptoms such as blood in the vomit or bile-stained vomit, which I did not have. Red flag symptoms are indicators that something might be significantly wrong. Our paediatric adviser said the clinicians did not seem to have any other concerns either, such as I having lost weight. Although I did lose weight in the following weeks, it was not a concern at this point.
27. Good Medical Practice section 15 says doctors must provide a good standard of practice and care. They must adequately assess patients’ conditions, taking account of their history and where necessary, examine the patient. They must also promptly provide or arrange suitable advice, investigations or treatment where necessary.
28. Following our review of the evidence and subsequent discussion with our paediatric adviser, we consider the Trust acted in line with the above guidance, as it arranged suitable tests and subsequent treatment for the working diagnosis of reflux.
29. We recognise that I was in the minority of infants with pyloric stenosis who did not present with projectile vomiting, however we consider it reasonable that the Trust made an alternative diagnosis of reflux in the first instance, given his presenting symptoms and lack of ‘red flags’.
Lack of information about the possibility of pyloric stenosis
30. Miss H told us the Trust did not give her information about pyloric stenosis. She says that if she had known more about the risks, she would have pushed more to return I to hospital sooner than she did.
31. In the Trust’s complaint response, it acknowledges that Miss H did not receive a written discharge summary, as she had left the ward before it had been printed. It also recognises that it is not documented in I’s notes what verbal advice the Trust gave to Miss H.
32. Good Medical Practice section 21 says clinical records should include relevant findings, the decisions made, the actions agreed, and the information given to patients. We have seen evidence in the nursing notes suggesting that some level of verbal safety-netting advice was given to Miss H, but it does not document what this advice was.
33. Clinicians give safety-netting advice to help make patients and their carers aware of significant signs and symptoms to look out for, and guidance for when they may need to seek further medical help.
34. We think Miss H would have been aware of the possibility of pyloric stenosis if she had received a copy of the discharge summary, which she unfortunately did not. However, our paediatric adviser confirmed there is no written safety-netting advice on this discharge summary anyway, and the Trust should have made sure Miss H had a copy of all relevant documentation.
35. Our paediatric adviser explained how in a case like this, where a parent is clearly very worried about their child, it is especially important to provide written advice so the parent or carer can refer to it at any point. This is in addition to clear records in the medical notes about any verbal advice given as well.
36. We consider the Trust did not act in line with Good Medical Practice Section 21 as there is no written evidence of what verbal or written advice the Trust gave to Miss H. We are of the opinion that, on the balance of probabilities, Miss H would have returned to hospital with I sooner, had she been given better safety-netting advice.
37. Our paediatric adviser told us that if I had returned to hospital sooner, it is entirely possible his pyloric stenosis might have been detected earlier than it was, lessening the period he was vomiting.
38. To decide if we should conduct a detailed investigation into a complaint, we look at what outcome the person coming to us wants to resolve their complaint. Our Service Model Guidance says, in sections 3.57 to 3.65, we can resolve a complaint without conducting a detailed investigation if we can deliver the outcomes a complainant asks us to achieve at an earlier point in our case handling process.
39. Our principles say where poor service has led to injustice or hardship, public bodies should try to offer a remedy that returns the complainant to the position they would have been in otherwise. If that is not possible, the remedy should compensate them appropriately. Our principles also say organisations should seek continuous improvement, and use lessons learnt from complaints to ensure that poor service is not repeated. It can do this by giving assurances that lessons have been learnt and explanations of changes made.
40. We spoke to the Trust, and it has agreed to provide Miss H with an apology, financial remedy of £150 and evidence of what it is doing to improve the documenting and sharing of safety-netting advice. We consider this amount of financial remedy to be in line with our severity of injustice scale and an appropriate amount of compensation.
41. This is because, we think that if the Trust had provided Miss H with clearer safety-netting advice, on the balance of probabilities, she would have returned sooner than she did with I. This may have resulted in an earlier diagnosis, and a lesser period of suffering.
42. We consider this injustice is in line with level two of our severity of injustice scale. This level of our scale is for impacts of a shorter duration (no more than 12 days in this case) which do not usually have a significant lasting impact. As there has been no ongoing effects for Kinglsey following his diagnosis, we consider this level of our scale appropriate in this case.
43. We are satisfied the Trust has now agreed to take appropriate steps, in line with our principles for remedy, to put right the injustice for Miss H and I. We consider we have resolved this part of her complaint.
Lack of GP referral on 1 and 9 August 2023
44. Miss H feels the Practice should have at least suspected pyloric stenosis, and referred I for more investigations during appointments on 1 and 9 August.
45. We sought advice from our GP adviser to help establish whether the clinical decisions taken by the Practice during these appointments were in line with relevant standards and guidance. Our GP adviser said that it was important to note (particularly in a GP setting), that pyloric stenosis is a relatively uncommon condition. This is compared to other causes of vomiting in children, such as gastro-oesophageal reflux disease (GORD).
46. On 1 August, our GP adviser told us the clinician took a full medical history, examined I, and found no ‘red flag’ symptoms for pyloric stenosis. The main red flag symptom as per NG1 which would make a clinician suspect pyloric stenosis is forceful, projectile vomiting. They explained how the vomiting is so projectile because the milk cannot get past the blockage at the exit of the stomach. Therefore, the milk is forced back up and out in a projectile manner.
47. Our GP adviser said that although I had lost a small amount of weight by this appointment, this would not be unexpected as he had been trialling smaller feeds since being discharged from hospital on 28 July. The medical records note the doctor observed I bottle feeding well and he was settled in between feeds.
48. The Practice recommended Miss H keep a feed/vomit diary for I and our GP adviser said this was appropriate advice, given the working diagnosis of GORD from the hospital discharge.
49. We consider the Practice acted in line with GMC GMP Section 15, as quoted above, during the consultation on 1 August. This is because the Practice adequately assessed I’s condition and provided suitable advice given there were no red flag symptoms present.
50. On 9 August, Miss H brought Kinglsey back to the Practice. The records say I had lost 2oz in one week, despite being back on bigger feeds since the last appointment with the Practice. Miss H also still had significant concerns which are clearly documented. In addition, although still not projectile, the vomiting was documented as being ‘quite a large amount’. Our GP adviser said these things should have triggered the Practice to make a referral to the hospital.
51. NG1 section 1.1.19 says ‘arrange an urgent specialist hospital assessment to take place on the same day for infants younger than 2 months with progressively worsening or forceful vomiting of feeds, to assess them for possible pyloric stenosis.’ I was not projectile vomiting, but it did seem to be getting progressively worse.
52. We do not consider the Practice acted in line with NG1 guidance during I’s appointment on 9 August. Taken in isolation, we appreciate the lack of projectile vomiting may have suggested other diagnoses, however by this point we think there were several causes for concern, in particular I’s weight loss and continuing worry from Miss H.
53. Immediately after this appointment on 9 August, Miss H sought further help from her health visitor and took Kinglsey to the ED at a different hospital Trust where he was admitted, diagnosed, and treated for pyloric stenosis.
54. We asked our paediatric adviser what the impact would have been if the Practice had appropriately referred I to hospital earlier in the day on 9 August. They told us the outcome for I would have been the same. This is because Miss H had already taken him to another hospital by the time he would have been seen by the Trust following a GP referral.
55. Although we have not seen any indications that the identified failing would have made a difference to I’s outcome, we spoke to the Practice to alert it of our findings as Miss H experienced distress. The Practice has agreed to provide Miss H with a letter of apology, acknowledging the emotional distress the experience caused her, as she did not feel listened to. It has also committed to further staff training to prevent similar failings in the future.
56. We consider these actions are in line with our principles to put right the emotional distress Miss H experienced. This is because we think this injustice is in line with level one of our severity of injustice scale. This level of our scale is for impacts of a short duration with no wider impact. The Practice have committed to learning from the complaint and putting measures in place to improve service in the future. We consider we have resolved this part of Miss H’s complaint.
57. We recognise this whole experience has been very difficult for Miss H and has caused emotional distress. Miss H told us she is pleased with the service improvements agreed to by the Trust and the Practice and was glad something was being put in place to help others in the future. We hope Miss H is reassured that we have fully considered her complaint.