Investigation of a pancreas mass in June 2020
21. Mrs I said during surgery in June 2020 the Trust identified a mass on Mr R’s pancreas that it failed to investigate. Mrs I said the Trust did not arrange any follow-up scans or biopsies of the mass. Mrs I said if the Trust had investigated the mass, the pancreatic growth may have been detected sooner.
22. The Trust said the mass seen on Mr R’s pancreas was considered a benign cyst and was not a cause for concern. A cyst is an abnormal sac in the body filled with fluid or semisolid materials. The Trust said a biopsy was not indicated and a plan was made to review the mass in a year’s time.
23. The Trust said in November 2021 it performed a CT scan which showed a mass in the pancreas which was felt to be a new cancer. It explained this was separate to the cyst which appeared unchanged.
24. The NICE guidance says pancreatic cysts should be investigated via either a CT scan or magnetic resonance imaging (MRI). An MRI is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. The guidance says if there are high risk factors such as jaundice, a solid component to the cyst or a large pancreatic duct then a patient should be referred to a specialist.
25. From the records we can see the Trust performed a CT scan of Mr R’s chest, abdomen, and pelvis on 1 June 2020. A CT scan uses a combination of X-rays and computer technology to produce detailed images of the inside of the body. The CT scan reported a 1.6cm cyst was identified within the tail of Mr R’s pancreas and it noted this could be followed up on any future surveillance imagining.
26. The Trust performed another CT scan on 28 September 2021 which showed the cyst was stable.
27. On 22 November the Trust admitted Mr R due to a three-week history of abdominal pain and loss of appetite. The Trust noted Mr R was visibly jaundiced.
28. The Trust performed a further CT scan on 25 November which showed there were no changes to the cyst. It also noted there was a soft tissue growth of 4.7cm in the head of the pancreas that should be considered malignant.
29. From the evidence we have seen, we have found the Trust acted in line with NICE guidance. This says pancreatic cysts should be investigated by a CT scan or an MRI. We can see the Trust identified the mass via a CT scan which is in line with NICE guidance.
30. We have not seen any evidence the mass had a solid component or that it was within the pancreatic duct. If this had been seen, it would have prompted a referral for further investigation in line with NICE guidance.
31. We have also not seen any evidence Mr R displayed symptoms of jaundice prior to November 2021. We can see the Trust performed a CT scan in September 2021 and noted the cyst was stable.
32. Approximately two months later we can see Mr R attended the Trust and was visibly jaundiced. The Trust conducted a CT scan which showed there were no changes to the cyst. Based on this we have found no failings in the Trust not investigating the pancreatic mass it identified in June 2020.
33. Our adviser said there was no indication that the pancreatic cyst should have been biopsied or surgically removed. They explained this was because Mr R was not presenting with high-risk symptoms outlined in the NICE guidance (paragraph 24) when he was seen in June 2020 or September 2021.
34. We understand Mrs I’s concern the Trust not investigating the mass that was identified in June 2020 meant that it developed into cancer and caused a blockage to Mr R’s bile duct.
35. We can see in June 2020 the Trust identified a benign pancreatic cyst in the tail of the pancreas. In the CT scan performed on 25 November the Trust noted the cyst was still present and unchanged from previous imaging.
36. In addition to this, the Trust noted there was a mass in the head of the pancreas that was 4.6cm in size that should be treated as cancerous. We can see that it is this mass that caused a blockage to Mr R’s bile duct, and not the cyst identified in June 2020.
37. We would like to make it clear that Mr R’s cyst that was identified in June 2020 was not cancerous and is separate to the cancerous mass that was located in November 2021. We understand Mrs I’s distress at feeling the Trust had failed to sufficiently investigate the pancreatic cyst. We hope this provides reassurance to Mrs I that the Trust acted in line with NICE guidance in its management of Mr R’s cyst.
38. We have seen no evidence the Trust should have taken further action regarding the pancreatic cyst in June 2020 or September 2021.
Ileostomy operation
39. Mrs I said the Trust informed her that once her father’s cancer had been removed and he had healed, it would perform an ileostomy reversal. Mrs I said the Trust failed to arrange this following the initial operation in July 2020. Mrs I said by not doing so, the Trust denied her father his dignity.
40. The Trust said it normally arranged ileostomy reversals around six months after the initial surgery. The Trust said due to the management of the COVID-19 pandemic, its operating capacity reduced from 100% to 50%. It said new cancer patients were prioritised for surgery at that time which caused a significant delay to Mr R’s surgery. The Trust apologised for the distress this caused to Mr R.
41. Our Principles of Good Administration says organisations should provide an effective service and prioritise their resources to meet service standards.
42. From the records we can see Mr R’s GP wrote to the Trust on 17 February 2021 and said ‘I understand you are planning to reverse his ileostomy as soon as theatre is open’.
43. Our adviser said the Trust’s explanation regarding the delay that occurred to Mr R’s surgery was reasonable. Our adviser explained an ileostomy reversal would be deemed a non-urgent surgery. They said during the COVID-19 pandemic there were significant pressures on the waiting lists for non-urgent surgery.
44. From the evidence we have seen, we have found the Trust has acted in line with our Principles of Good Administration. We can see it prioritised its resources during the COVID-19 pandemic to allow it to provide as an effective service as possible.
45. We can see the Trust did not complete Mr R’s ileostomy reversal within the expected six months. As explained above, we think this was due to the COVID-19 pandemic and the Trust re-allocating its resources to priority surgeries. We appreciate this delay caused Mr R to have the ileostomy for longer, and that the ileostomy caused him embarrassment. In turn, we understand this caused Mrs I distress to witness this.
46. We have considered the situation at the time, and the pressures COVID-19 put on the NHS, as part of our investigation. We have seen evidence the Trust prioritised urgent surgery due to its reduced surgery capacity, and that this was the reason why Mr R’s reversal procedure could not go ahead. Based on this, we have found the Trust acted in line with our Principles of Good Administration.
Diagnosis of pancreatic cancer
47. Mrs I said the Trust failed to recognise and diagnose her father with pancreatic cancer despite it completing a CT scan in September 2021. Mrs I said she did not learn this until after her father had sadly died.
48. The Trust said the pancreatic cancer was not visible on the CT scan it performed in September 2021. The Trust said in retrospect the CT scan did show liver metastases (spread of cancer to the liver), but the radiologist had not commented on this in their report. The Trust said Mr R may have had an MRI between two and four weeks earlier than he did if the liver metastases had been reported on. The Trust said this would not have changed his management from when he presented with jaundice in November 2021.
49. The HCPC guidance says radiologists must keep full, clear and accurate records for everyone they care for, treat or provide a service to.
50. From the records we can see the Trust completed a CT scan on 28 September 2021 and noted there was no evidence of recurrent disease or metastasis.
51. Our radiologist adviser reviewed Mr R’s CT scan and noted a cyst could be seen but there were no worrisome features, and it did not appear malignant. They said there was no evidence of a solid lesion in the pancreas that would suggest there was an underlying cancer present.
52. Based on this, we have found the Trust has acted in line with HCPC guidance. We can see the Trust noted there was no evidence of recurrent disease, which our radiologist adviser has confirmed. This was in line with HCPC guidance which says records should be accurate.
53. We understand Mrs I is concerned the Trust missed pancreatic cancer and her father’s outcome may have been different if the Trust had identified his cancer earlier.
54. Our radiologist adviser said even if the Trust had identified, and even treated the liver metastases, this would not have changed the outcome of Mr R’s pancreatic cancer. This is because the liver metastases are cells that have spread from the primary cancer site and is not the origin.
55. Our radiologist adviser explained Mr R had aggressive pancreatic cancer that had progressed significantly between September and November. They said this would still have developed quickly and aggressively, even if the liver cancer had been identified. Our radiologist adviser said in November 2021 Mr R had a blockage and obstruction in his bile duct which was not present on his scan two months earlier.
56. Our adviser explained pancreatic cancer commonly presents late with advanced symptoms and a very poor prognosis. They said patients diagnosed with metastatic pancreatic cancer, like Mr R, have poor survival rates and often die within months of receiving their diagnosis.
57. We recognise why Mrs I is concerned the Trust missed pancreatic cancer on her father’s CT scan. We hope the above clearly explains that pancreatic cancer was not visible on Mr R’s September 2021 CT scan, and that the information from our adviser provides some reassurance. We have found no evidence of a failing here.
Delay diagnosing Mr R in November 2021
58. Mrs I told us the Trust delayed diagnosing her father’s cancer when he presented with jaundice in November 2021. Mrs I said the Trust appeared to be doing a lot of tests, but they did not receive any clear information regarding a diagnosis until two months after her father had been discharged.
59. GMC guidance says doctors must promptly provide or arrange investigations or treatment where necessary. NHS guidance says where a consultant upgrades a referral to a cancer pathway, ideally a patient should start treatment within two months (62 days) from the start of referral.
60. From the records we can see the Trust admitted Mr R with jaundice on 21 November. The Trust completed an ERCP which uses X-ray and a flexible tube with a camera on the end to examine the bile duct. During this procedure, the Trust placed a stent to open the common bile duct, and this allowed it to drain more freely and treat Mr R’s jaundice. During the ERCP procedure the Trust also took cell samples of the obstruction for testing.
61. Our clinical adviser said hospitals normally complete ERCP procedures once or twice a week and there are no national guidelines on wait times for this procedure. We can see the ERCP occurred three days after Mr R’s admission. Our adviser said the Trust appeared to have completed the ERCP within a reasonable timescale.
62. We can see the samples taken by the Trust during the ERCP did not show cancer. From this we can see the Trust arranged for a multi-disciplinary team (MDT) to discuss Mr R’s case and he was discharged on 1 December 2021.
63. We can see following Mr R’s discharge, the Trust held an MDT meeting where it recommended an endoscopic ultrasound scan and a PET scan. An endoscopic ultrasound scan combines both an endoscopy and ultrasound.
64. During an endoscopy, a doctor uses a flexible tube with an attached camera to see the upper gastrointestinal tract. An ultrasound uses high-frequency sound waves to create an image of part of the inside of the body. A PET scan is an imaging test that uses a radioactive substance to check for changes in chemical activity in the body. The Trust referred Mr R for these procedures around the 19 December.
65. We can see the Trust completed the PET scan on 12 January 2022 and confirmed Mr R’s cancer had spread to his liver. The Trust completed the endoscopic ultrasound on 21 January and a biopsy was taken.
66. On 28 January the Trust completed a review of the tissue samples it had taken and found the pancreatic tumour had not spread from Mr R’s previous rectal cancer tumour. The Trust diagnosed Mr R with squamous cell carcinoma (SCC) of the pancreas. This is an extremely rare type of pancreatic cancer that originates in the duct.
67. We can see the Trust completed an oncology review on 11 February and found Mr R to be in a frail condition. We can see the oncologist noted Mr R would not be suitable for palliative chemotherapy due to his poor general condition.
68. Our clinical adviser said if Mr R had been fit for palliative chemotherapy, he was likely to have fallen short of the NHS guidance target of 62 days. They said ideally, Mr R should have started palliative chemotherapy by the end of January 2022.
69. NHS guidance says it does not require 100% compliance with the target. The NHS guidance says there will be instances in which appropriate clinical care results in a breach and the threshold is set to make allowance for such instances.
70. Our adviser said some of the delay that occurred was due to the ERCP results returning as negative for cancer. They said if they had returned as positive, the Trust would have confirmed a diagnosis on 10 December, within one month of presentation, and in line with NHS guidance.
71. Our adviser told us the Trust could not have completed the other investigations before 10 December as the procedures were only necessary due to the ERCP providing a negative result. We can see the time between the referral for an endoscopy and the test being completed was slightly over a month. It is important to note it was also over the Christmas period when the NHS generally has lower capacity.
72. Our adviser told us even taking the Christmas period into account, one month is a relatively long time to wait for the endoscopy. We do not have any other evidence that would explain the delay here.
73. We understand the NHS guidance says delays can occur for appropriate reasons. We do not have any reasons to explain the delay in this case. We have found the Trust did not meet the 62-day target, as described in the NHS guidance. We will consider the impact of this in the impact section below. We appreciate the delay in diagnosis would have been distressing for Mr R and his family.
Communication with Mr R’s family and support
74. Mrs I said when the Trust discharged her father in November 2021, he was unaware of his prognosis and the Trust should have discussed this with his family. Mrs I said the Trust also did not inform family what warning signs to look out for or how to care for Mr R at home.
75. The Trust said before it discussed the results of Mr R’s CT scan in November 2021, it asked him whether he would like to have family members present. The Trust said Mr R declined and informed the Trust he would like to speak to his family members himself. The Trust said after providing Mr R with his scan results the consultant asked him again if he would like them to discuss his results with family and Mr R declined.
76. GMC guidance says doctors must provide patients with information about their diagnosis and prognosis. It also says doctors must record accurate information in medical notes.
77. From the records we can see a consultant reviewed Mr R on 26 November. The written records from this assessment are very limited but we can see the Trust recorded it suspected Mr R had pancreatic cancer.
78. We have not seen any reference within the medical records of the consultant asking Mr R for his consent to share this potential diagnosis with his family. We would expect the consultant to record the details of this conversation within Mr R’s medical notes. We have no way of confirming if this conversation took place or what was said during the conversation.
79. We can see on 29 November a member of the palliative care team recorded Mr R’s diagnosis was suspected to be metastatic pancreatic cancer with lung metastases. This refers to late-stage pancreatic cancer where cancer cells have spread to the lungs.
80. We can see the Trust also wrote to Mr R on 10 December to explain the ERCP was non-diagnostic (could not provide a diagnosis) and further investigations were required. The Trust said the tests would determine whether the metastatic lung lesions were from his rectal cancer or pancreatic cancer.
81. We understand the Trust has told us it asked Mr R for his consent to disclose information about his condition to his family. The Trust said Mr R denied this request as he wanted to inform his family of his condition himself.
82. We have not seen any evidence to confirm whether these conversations took place. This makes it difficult for us to reach a view on whether Mr R provided his consent to the Trust for information relating to his condition to be shared.
83. We have found the Trust has failed to maintain accurate records regarding the conversation of consent it had with Mr R. This is not in line with GMC guidance which says doctors must record accurate information within the medical notes. We will consider this in the impact section below. We appreciate learning of this failing will be distressing for Mr R’s family.
84. GMC confidentiality guidance says doctors may disclose information to family members under certain circumstances. These circumstances includes when a patient provides consent or that the disclosure was required by law.
85. As set out above, we have found the Trust failed to record the conversation it told us it had with Mr R. However, we cannot say the Trust has failed to follow GMC confidentiality guidance. This is because we do not have enough evidence to determine whether the Trust had Mr R’s consent to inform his family of his condition and needs. This consent was required before the Trust could share this information, and we have not seen any evidence that would suggest this disclosure was required by law.
86. We will next look at whether the Trust failed to arrange support for Mr R.
87. Mrs I said the Trust did not arrange suitable support for her father on his discharge. Mrs I said she had to care for her father in his last days which, caused him to feel ignored and unsupported by the Trust and this was distressing for them both.
88. NICE guidance on community care says the discharge coordinator should arrange follow-up care. It says they should identify practitioners, including community health, who will provide support when the person is discharged and record their details in the discharge plan.
89. From the records we can see on Mr R’s discharge summary dated 30 November, the Trust documented his diagnosis and that he had been referred the same day to the community palliative care team. We can also see there were several follow up appointments arranged on Mr R’s discharge including an outpatient oncology appointment, an MDT meeting and a community palliative care team appointment.
90. We have also reviewed the records of the community palliative care team, following the Trust’s referral. The community palliative care team is part of a separate hospital trust. We can see the community palliative care team received the referral from the Trust on 30 November and arranged for a specialist palliative care nurse to visit Mr R at home on 6 December.
91. Based on the evidence we have seen, we have found the Trust arranged for Mr R to receive appropriate support at home. We can see the Trust referred Mr R to the community palliative care team to provide his care at home.
92. We can see the palliative team reviewed Mr R whilst he was an inpatient. We can see the Trust referred Mr R to the community palliative team on his discharge for them to provide his care at home. We have found the Trust acted in line with NICE guidance on community care. This says the discharge co-ordinator should arrange follow-up care and identify who will provide the care in the community.
93. We do not underestimate how difficult this time was for Mrs I, her father and their family. We recognise looking after Mr R at home whilst feeling unsupported would have been very stressful and distressing. Our decision is in no way intended to detract from that.
Palliative care communication
94. Mrs I said the Trust did not explain to her father what palliative care meant on his discharge. Mrs I said this meant she had to explain to her father what it meant, which was very upsetting for her.
95. The Trust said that palliative care normally refers to end of life care. It said community palliative care teams also provide support and treatment to patients with incurable cancer.
96. GMC guidance says doctors must provide patients with information about their diagnosis and prognosis and that doctors must record accurate notes.
97. As explained in paragraph 77, the Trust completed a ward round on 26 November and the written records are very limited. They do not include reference to a palliative care referral or a discussion with Mr R regarding the subject.
98. On 29 November we can see a member of the palliative care team noted it had received a referral for Mr R. They documented it was unclear whether this referral, or palliative care, had been discussed with him. The staff member requested for nursing staff to discuss Mr R’s diagnosis with him further and to re-refer if required.
99. We have not seen any evidence this was done or that the Trust explained to Mr R his care had become palliative. We have found the Trust failed to discuss with Mr R his referral to palliative care and what this meant. This is not in line with GMC guidance which says doctors must provide patients with information about their diagnosis and prognosis and record accurate notes.
100. We will consider the impact of this failing below.
Impact
101. In summary, we have found:
• there was a delay in the time taken for the Trust to finalise Mr R’s cancer diagnosis • the Trust did not accurately record information within the medical records about the discussions it had with Mr R • the Trust failed to explain to Mr R what his referral to palliative care meant.
102. Mrs I feels if the Trust had diagnosed Mr R’s cancer sooner, she believes his death could have been avoided and his pain lessened. Mrs I said the actions of the Trust have caused her anger, distress and she had a reoccurrence of her clinical depression.
103. Given Mrs I concerns, we have considered whether Mr R’s outcome could have been different considering the failings we have identified.
104. We can see the Trust diagnosed Mr R with SCC pancreatic cancer on 28 January. On 10 February 2022 we can see Mr R’s condition had declined significantly and the Trust decided Mr R was not suitable for palliative chemotherapy.
105. Given Mr R’s rapid decline and the aggressive nature of his cancer, we cannot say how the palliative chemotherapy would have affected him. We also cannot say whether Mr R would have been suitable for chemotherapy if the delays had not happened. Our adviser said chemotherapy would not have changed the clinical outcome for Mr R but that it may have extended his life for up to three months.
106. We can say the failing to diagnose Mr R’s cancer has led to uncertainty about whether Mr R could have lived for slightly longer. This uncertainty is an injustice for Mrs I, and we acknowledge how distressing this will be for her. We will make recommendations in the section below to address this.
107. Mrs I said the Trust failing to communicate with her family meant that they were unable to support Mr R as they were unaware of his prognosis. Mrs I said her father was also unaware of his diagnosis and it was upsetting and distressing.
108. We have seen a failing in the Trust not recording a conversation it had with Mr R regarding information sharing. We recognise it would have been very distressing for Mrs I to have her father discharged home and not know his diagnosis or prognosis.
109. Mrs I said having to explain what palliative care was to Mr R caused them both distress. We think that the failure of the Trust to explain the circumstances of the palliative care referral has led to distress for Mr R and Mrs I. We will make recommendations in the section below to address this.