Communication
16. Mrs E complains that staff failed to communicate appropriately with her, meaning neither she nor her son, understood his care plan and the severity of his condition. She says that when she asked for clarification about what was happening, she was made to feel like she was interfering and a nuisance to staff.
17. The Trust acknowledged in its response of 1 April 2022 that Mrs E received inadequate communication with regard to Q’s diagnosis of necrotising pancreatitis.
18. The GMC Good Medical Practice guidelines (the GMC guidelines) outline how a doctor should communicate with a patient and their family. They say doctors, ‘must be considerate and compassionate to those close to the patient and be sensitive and responsive in giving them support and information.’
19. They also say doctors, ‘must give patients the information they want or need to know in a way they can understand. This includes information about:
• their condition(s), likely progression, and any uncertainties about diagnosis or prognosis • the options for treating or managing the condition(s), including the option to take no action • the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option.’
20. Mrs E says that she was worried about Q and that she repeatedly asked for updates on his condition, but staff gave her very limited information.
21. There is no evidence within the records of any conversations with Q or Mrs E to explain his condition, his prognosis or any ongoing care plan on discharge.
22. There are only two conversations documented in the records where staff involved Mrs E. These say that on 18 December, staff asked if she would like to accompany Q to his CT scan, and on 23 December the dietician explained to her that Q was only allowed to drink water at that time. These conversations did not describe Q’s condition or prognosis or care plan and from what we can see, were very brief.
23. When Q was admitted to the ward, the records show the staff were aware he had learning difficulties and noted he was able to retain information and had capacity to make his own decisions regarding his care. Following a referral to the Learning Disabilities Team on 11 December, their liaison nurse reviewed Q on 18 December confirming he had capacity to make his own decisions. The Trust completed a review of Q’s communication needs, and the outcome of the review was there was no need for any specific communication requirements to aid Q’s understanding.
24. The records show there are instances throughout his admission that Q understood why he was in hospital, but he sometimes did not understand the care requirements and why staff were asking him to complete certain tasks as part of the ongoing assessment of his condition.
25. Mrs E tells us that in day-to-day life, she would explain things to Q in a way he could understand so he was aware of what was happening or what was required of him in any situation. We have not seen evidence the Trust took this into account when communicating with Q or Mrs E.
26. Mrs E said staff did not provide the information she asked for regarding Q’s condition and made her feel like a nuisance when she asked staff for updates. On the balance of probabilities, we accept her account that staff did not answer her questions about Q’s condition when he was an inpatient. We saw her account in correspondence with the Trust that she did not find out that Q had necrotising pancreatitis until the Trust’s first complaint response. It is understandable that Mrs E felt like a nuisance if she had to repeat her questions. We appreciate that the lack of information must have been a source of distress for her at an already worrying time.
27. Further to this, our gastroenterology adviser told us that when Q was discharged, doctors should have explained to him and his family how important it was that the scan planned for seven days later was done. We saw no evidence this happened.
28. After careful review of the evidence and the comments from our gastroenterology adviser, we consider the Trust did not act in line with the GMC guidelines and communicate the nature and severity of Q’s condition throughout this admission. We consider this a failing.
29. We have considered what steps the Trust has already taken and whether these actions go far enough to put things right for Mrs E and prevent a recurrence.
30. The Trust has taken some positive steps to address the impact on Mrs E. These are outlined in its complaint response dated 1 April 2022. The Trust has apologised to Mrs E for its failure to communicate adequately with her and has reminded staff about the importance of ensuring relatives are fully informed in a timely way. The Trust also said it would review the importance of good communication in the monthly surgical governance meeting.
31. We consider the Trust has demonstrated plans to improve general communication with patients’ families. However, we cannot see that the Trust has acknowledged or put any improvements in place that demonstrate how staff communicate with patients with learning difficulties given that there is evidence in the records that Q did not always understand his care requirements or why he was being asked to complete certain tasks.
32. The Trust has acknowledged that staff did not communicate with Mrs E during her son’s admission, but it has not fully addressed the impact of its poor communication. We know that this is a continued source of upset for Mrs E as the Trust did not keep her updated about the nature and severity of Q’s condition.
33. More specifically, she only found out about the severity of his condition and the importance of the follow up scan that should have taken place a week after discharge through the complaints procedure. She says if she had known about this at the time and about its importance, she would have done more to ensure it happened. This is an emotional injustice to her as it is clear Mrs E feels as though she could have done more to help her son, and she should not have been put in that position.
34. We have detailed our recommendations in the recommendations section below.
Discharge
35. Mrs E complains that the Trust should not have discharged her son on 27 December 2021. She believes that if he had not been discharged, he would have received the follow up care and additional scans he required to monitor his condition.
36. The Trust said Q was diagnosed with necrotising pancreatitis following a CT scan on 18 December 2020. It says Q was discharged because he was clinically improving and was eating, drinking and mobilising as normal.
37. Section 1.2.14 of NICE guideline 104 (NG 104) on Pancreatitis says, ‘if a person develops necrotic, infective, haemorrhagic or systemic complications of acute pancreatitis: seek advice from a specialist pancreatic centre within the referral network and discuss whether to move the person to the specialist centre for treatment of the complications.
38. In line with this guidance, after Q was diagnosed with necrotic pancreatitis following the CT scan and prior to discharge from hospital staff should have contacted the regional pancreatic centre to discuss the management of Q’s condition.
39. The advice obtained from the regional pancreatic centre would have come from a hepatobiliary specialist. Our surgical adviser said this may have been just a phone call to get verbal advice. They said it is impossible to confidently predict the conversation and the recommendations, but normal practice would be for the specialist centre to ask for the CT scan to be electronically sent to them to be reviewed.
40. In addition to the comments from our surgical adviser, our hepatobiliary adviser said the Trust should have sought advice from the regional pancreatic centre before discharge. As there is no evidence that staff did this, the Trust’s actions were not in line with NG104. Taking the hepatobiliary adviser’s comments into account, we consider it was inappropriate for the Trust to discharge Q without taking specialist advice. We conclude this was a failing. The Trust did not identify this in its response to Mrs E’s complaint.
41. Mrs E complained that failings in the decision to discharge Q meant his condition was not monitored or treated and this contributed to his death. We went on to consider the likely impact of the failing we found.
42. The records show that before Q was discharged, he was mobile, eating and drinking and that his blood profiles had improved. Our hepatobiliary adviser said many specialists would have arranged a CT before discharge, but this is not a requirement. They said in their view this means it was reasonable to discharge him with arrangements for a further CT scan and clinical review in a week, which was the Trust’s plan. This means that if the Trust had taken specialist advice, this may have resulted in the Trust still discharging Q when it did, with plans for follow up care.
43. We do not conclude that the failure to seek specialist advice as part of the discharge process led to a lack of further monitoring and treatment. Based on our clinical advice it was appropriate to discharge Q with a plan for a further CT scan and clinical review in a week. We went on to consider Mrs E’s concerns about the lack of this further monitoring and treatment.
44. Our Principles of Good Administration say that public bodies should do what they say they are going to do. The Trust acknowledged in its response of 1 April 2022 there was a failure in the mechanism for making a follow up appointment and it acknowledged this would have been an opportunity to monitor Q’s pancreatitis and its severity.
45. We asked our hepatobiliary adviser if the CT scan had been done within seven days of discharge what it would have likely shown, and if any alternative treatment options would have been available for Q that may have prevented his sad death. We will go on to explain why we have concluded it is not likely Q’s sad death would have been avoided if the follow up scan and review had gone ahead as planned.
46. Our hepatobiliary adviser said that a repeat CT scan is often used to look for any developments or secondary complications of the patient’s condition.
47. Blood tests were arranged for 4 January 2021, approximately when the CT scan should have been done. The hepatobiliary adviser said that any severe complications developing because of the necrotising pancreatitis would have shown in the blood results as worsening inflammatory markers, anaemia and signs of organ failure but this was not the case. The blood tests showed further improvement of Q’s condition.
48. The hepatobiliary adviser said it is possible to develop infected necrosis within this timescale, but it is unlikely in someone who is clinically improving. This means we think it unlikely he had infected necrosis at this time. The hepatobiliary adviser said other severe complications associated with his condition tend to develop with time so would not have shown on a CT within a week of discharge.
49. It is noted in the post-mortem that Q’s cause of death was necrotising pancreatitis and bleeding duodenal ulcer. Sadly, we do not know how the necrosis caused Q’s death. We know from our advice that the post-mortem did not show any severe secondary complications of necrotic pancreatitis which could have been treated. Our hepatobiliary adviser told us that it is possible a complication of the necrosis developed that a post mortem would not have shown such as cardiac arrhythmia (irregularities in the heartbeat) or that Q had developed infected necrosis.
50. The postmortem did show that Q had acute duodenal ulcers (the duodenum is an opening in the stomach lining where it directly connects with the small intestine). Our hepatobiliary adviser told us such ulcers are not usually seen on a CT scan. Although these were identified after Q had sadly died, it is not possible to identify when these developed or if they were even present when the CT scan should have been completed.
51. Taking into consideration the comments from the hepatobiliary adviser, Mrs E and what we know from the postmortem, on balance, we consider it is likely that the follow up CT scan would have been similar to the previous imaging on 18 December. We have not seen cause to conclude that the outcome would have been different for Q had there been no failing in his care.
52. We recognise that we cannot provide Mrs E with certainty in this. Sadly, this means Mrs E will be left with a degree of avoidable uncertainty around whether anything may have been different if nothing had gone wrong. This is likely be a continued source of distress to Mrs E which is an injustice to her.
53. We considered what the Trust has done to address the failure to arrange the follow up care. The Trust explained procedures put in place to ensure events of a similar nature do not happen again. It said this is monitored weekly. Although the Trust appears to have made significant improvements in it makes and monitors follow up appointments, it has not done enough to address the emotional impact on Mrs E.
54. The recommendations we make relating to this are set out in the recommendations section below.
Prescriptions
55. Mrs E complains staff stopped Q’s prescription of omeprazole on discharge which may have meant some of his symptoms were not alleviated.
56. The Trust's response to Mrs E said it was reasonable to prescribe omeprazole in hospital but not on discharge.
57. The BNF says that omeprazole is not indicated for treating acute severe pancreatitis. However, it does indicate omeprazole is a treatment for gastric ulcers.
58. Our gastroenterology adviser said that although omeprazole is not indicated for treating severe pancreatitis, it may reduce pancreatic secretions and the risk of peptic ulcers developing due to stress. They said it was reasonable not to continue the omeprazole as an ulcer was not suspected, and there is no strong trial evidence to recommend continuing the drug.
59. When Q was discharged from the Trust on 27 December 2020, there was no evidence to show that Q had a gastric ulcer. When discharged, Q was clinically improving. Sadly, the ulcer was only found at post-mortem.
60. Taking into consideration the BNF, our gastroenterology adviser’s comments and the information the Trust had available about Q’s condition at the time, we do not find a failing here.
61. We understand how upsetting it must be for Mrs E to think that Q was discharged without the necessary medication, and we have not discounted what she has told us.
Summary
62. To summarise, we find that in line with guidance, staff should have shared Q’s diagnosis and prognosis with Mrs E during his admission. As part of the discharge process, staff should have also shared the nature and severity of Q’s condition and told her about the importance of a follow up CT scan. We agree that Mrs E would have likely contacted the Trust for the CT scan to take place had she known its importance.
63. We find that before discharging Q, the Trust should have sought advice from the specialist pancreatic centre. Had it done so, Q might still have been discharged with planned follow up care. However, although the Trust did plan to provide follow up care it failed to arrange this.
64. On the balance of probabilities, we have concluded it is not probable that Q’s death would have been avoided if the follow up care had gone ahead as it should have. This is because of evidence indicating that Q was clinically improving at the time the follow up scan was due to take place.
65. We also find that staff acted in line with guidance by stopping omeprazole when discharging Q as an ulcer was not suspected.
66. In response to Mrs E’s complaint, the Trust outlined some service improvements to avoid the events complained about happening again. Although this is positive, the Trust has not addressed the failings in communicating with patients with learning difficulties when there is evidence of them not fully understanding care requirements or instruction, or the impact of the identified failings on Mrs E. We have made some recommendations in the section below to address this.
67. We understand it has been a difficult time for Mrs E having to relive the events of when her son died. We extend our condolences to her. We hope we have been able to clearly explain how we have reached our views based on the evidence we have considered.