Stool Sample 23. Mrs A complains it was inappropriate for the Trust to ask her son to provide a stool sample when he reported changing symptoms in December 2021. She feels a stool test was not the right option as Mr B had not done one before, so there was no ‘baseline level’. She says this meant tests on the sample would not have shown if he had cancer or not.
24. The Trust explained Mr B emailed its specialist IBD nurses on 13 December 2021. He told them he had new symptoms including abdominal cramps. On 16 December a nurse sent Mr B a pot to provide a stool sample so they could measure his calprotectin levels. Raised calprotectin levels indicate bowel wall inflammation. The pot never arrived.
25. On 2 February Mr B emailed the nurse to chase the pot. The nurse sent another pot to Mr B and the Trust analysed the sample on 25 February. His calprotectin level was 489, which is significantly above a normal level of 50. The Trust said the test result, in addition to Mr B’s clear colonoscopy in April 2021, indicated active bowel inflammation was causing his symptoms.
26. There are two tests which can be performed on a stool sample and are relevant here. One is the faecal calprotectin test that indicates problems like Crohn’s disease, IBD and UC. The other test is a faecal immunochemical test (FIT) that looks for blood in someone’s poo. Blood in poo could be a sign of cancer, but conditions like UC can cause it too.
27. BSG guidelines set out that a faecal calprotectin test should be used to investigate patients with acute flare-ups of UC. The results can be used to target medication changes that allow for better management of the disease.
28. The NHS website says the main symptoms of UC are: • recurring diarrhoea, which may contain blood, mucus or pus • tummy pain • needing to poo frequently.
29. NICE cancer guidelines say clinicians should suspect colorectal cancer when the person is aged under 50 years and has rectal bleeding along with either unexplained: • abdominal pain, or • weight loss.
30. We have not seen the original emails between Mr B and the IBD nurse as the nurse did not add them to his records. However, the Trust’s complaint response provides a summary of the emails Mr B sent to nurses at the time and their responses. We have used this to understand what happened.
31. The IBD nurse knew Mr B had UC. He also reported new symptoms that had started after his medication was changed five-months earlier. These symptoms he reported were typical of UC and therefore not ‘unexplained’ as set out in NICE cancer guidelines.
32. Our adviser explained the nurse appropriately investigated the changes by asking Mr B for a stool sample to check his calprotectin levels.
33. They added UC causes someone’s intestines to bleed, which meant a FIT would have shown Mr B did have blood in his poo. Therefore, it appears even if the nurse had requested a FIT, this would not have been a reliable test to check for colorectal cancer.
34. We consider the IBD nurse acted in line with guidance by arranging a faecal calprotectin test via a stool sample when Mr B reported changing symptoms.
35. We recognise the exceptional upset Mrs A has experienced because of what happened and hope this can bring some reassurance to her.
Response to Raised Inflammation Markers in February 2022 36. We looked at Mrs A’s complaint staff at the Trust did not respond appropriately to Mr B’s raised calprotectin levels. She believes they should have investigated the high-level of inflammation further – especially considering the bloody stools Mr B was reporting.
37. The Trust’s complaint response said the IBD nurse emailed Mr B with the results of the raised calprotectin. The nurse set out the possible causes of his pain and how they related to the new symptoms he reported.
38. The nurse explained they would have more information after the routine colonoscopy due on 22 April and Mr B agreed. The nurse also sent Mr B an email from the consultant confirming this.
39. The BSG guidelines set out that people with acute severe UC should be admitted to hospital and have a range of urgent tests, including: • abdominal X-ray or CT scan • stool test • blood tests • sigmoidoscopy (a procedure to examine the lower part of the large intestine).
40. Acute severe UC is defined as when someone has more than six bloody stools per day and at least one of: • body temperature over 37.8°C • heart rate over 90 beats per minute • less than 105g of haemoglobin per litre of blood, or • more than 30mg of C-reactive protein per litre of blood.
41. Haemoglobin is a substance found in the blood that transports oxygen around the body. Creactive protein is produced by the liver and increases in response to inflammation in the body.
42. A blood test on 31 January showed Mr B’s haemoglobin was 160g per litre of blood. There is no indication his emails from the time reported a high temperature or heart rate.
43. Our adviser explained although Mr B appeared to report symptoms of passing bloody stool, he did not meet the criteria for it to be deemed severe. Consequently, Mr B did not need urgent investigations.
44. They said it was reasonable for staff to wait for the routine test results before taking any further action. This is because the results would provide a better understanding of the possible causes of the suspected flare-up and how to treat it. This was especially true in light of Mr B’s upcoming colonoscopy, magnetic resonance cholangiopancreatography (MRCP) and blood tests that had been arranged.
45. An MRCP is an MRI scan focused on imaging the biliary and pancreatic ducts. It is primarily used to detect conditions like pancreatic cancer, inflammation, and gallstones.
46. There was no indication Mr B’s inflammation and reported symptoms needed further investigation immediately. Therefore, staff at the Trust acted in line with relevant guidelines when they decided to wait for the routine test results.
Not rearranging the colonoscopy 47. Mrs A feels her son’s new symptoms and raised calprotectin result meant the Trust should have brought forward his colonoscopy that was scheduled for 25 April.
48. BSG guidelines say patients with IBD and PSC should have an annual surveillance colonoscopy.
49. NICE cancer guidelines say once a patient is referred for suspected colorectal cancer then a colonoscopy will be done to investigate further.
50. Mr B had a colonoscopy in April 2021 that found no signs of cancer, and another was arranged for April 2022.
51. His MRCP on 8 February 2022 showed his bile and pancreatic ducts were ‘broadly stable’, but the follow-up discussion recommended another MRI scan of his liver to be sure.
52. The MRI was done on 23 March and reported five days later. This showed parts of Mr B’s bile ducts were stretched because other parts had narrowed. The scan had no indication suggesting Mr B had cancer in his bile ducts. However, the report noted a short segment of his bowel wall had thickened and parts of his colon were inflamed.
53. The MRI report advised further investigation, but it was initially not felt to be bowel cancer. As the colonoscopy was arranged for 25 April (four weeks from the report) the Trust did not make changes made to bring the colonoscopy forward.
54. Our adviser said Mr B did not meet the criteria for an urgent colonoscopy set out in NICE caner guidelines. These criteria in people under 50 years of age are rectal bleeding and either unexplained abdominal pain or weight loss. These symptoms were not ‘unexplained’ as they were typical of UC.
55. Our adviser explained it was reasonable not to bring the routine colonoscopy forward based on the symptoms he reported.
56. We consider the Trust did not need to bring forward Mr B’s routine colonoscopy as he did not meet the criteria for urgent investigation.
57. We now know Mr B had cancer at this time and recognise it may be hard to read our decision on this. We understand how much upset Mrs A has experienced due to what happened.
MRI scan reporting 58. As explained above, the Trust gave Mr B a routine MRCP on 8 February 2022. The radiologist wrote the report of what the scan showed on 11 March, 31 days later.
59. There were no national guidelines for reporting scans at the time of the events. The Trust explained it aimed to report all scans within six weeks. We have seen its policy Communication of Imaging Results that sets this out.
60. The Trust said it prioritises scans based on urgency. In a descending order of priority these were: • inpatients and emergency requests • out-patients with a suspicion of a potential cancer diagnosis • urgent cases • routine examinations.
61. Although Mr B’s health conditions meant he was at risk of developing cancer, there was no suspicion of cancer at the time. This meant Mr B’s MRCP on 8 February was referred as a routine out-patient scan. The Trust prioritised it as such and reported it in line with the relevant standards.
1 April CT scan 62. Mrs A says the Trust missed an opportunity to give her son urgent tests sooner when it did not notice the CT scan on 1 April showed a tumour in his colon. She says these tests would have led to an earlier diagnosis and treatment. She feels earlier action may have meant her son’s life was prolonged, or his death avoided.
63. Imaging guidelines set out that radiologists should methodically interrogate medical images and ensure that all findings have been noted.
64. NICE cancer guidelines say doctors should consider referring a patient for the suspected cancer pathway when a rectal or abdominal mass is found. The referral would result in a follow-up appointment within two weeks for further tests.
65. The Trust acknowledged the scan from 1 April showed Mr B had a tumour, but the report dated 10 April did not mention it. The Trust said it first identified Mr B’s tumour in the routine colonoscopy on 25 April.
66. It found the tumour should have been identified from the CT scan done on 1 April. It explained this was an error and fed it back to the consultant who originally reported the scan.
67. As this finding was not noted originally it appears to be a failing. We have therefore considered whether it resulted in the missed opportunity for earlier treatment Mrs A claims.
68. Our adviser said if the report dated 10 April mentioned the tumour then Mr B’s colonoscopy would likely have happened within two-weeks based on NICE’s cancer guidelines. The latest this colonoscopy would have happened was 24 April.
69. Our adviser explained if the colonoscopy happened earlier then its findings would likely have been the same as they were on 25 April – that Mr B had a tumour and it had spread.
70. Consequently, we consider the delay to Mr B’s cancer diagnosis may only have been by one day.
71. Likewise, this delay would not have changed the treatment the Trust gave Mr B. This is partly because the potential delay was so small, but also because Mr B’s cancer was very aggressive and had spread quickly.
72. Likewise, the Trust gave Mr B first and second-line treatment for his cancer with FOLFOX then FOLFIRI promptly. These are chemotherapy medicines typically used to treat both bowel and liver cancer. Despite this treatment the cancer continued to progress.
73. Therefore, even if treatment had started at the earliest opportunity possible, we consider it would not have changed the clinical outcome for Mr B or prolonged his life. This means we cannot link the failing to the most serious impact Mrs A claims.
74. We recognise how distressing the knowledge of this delay was for Mrs A.
75. We have therefore looked at what the Trust has done to put this right.
76. To do so, we compared the Trust’s actions to our Principles for Remedy. These set out that organisations should identify and acknowledge poor service and apologise. Organisations should also act to stop the same thing happening again.
77. The Trust’s complaint response identifies what seems to have gone wrong. It raised the issue with the member of staff involved and discussed what happened at a discrepancy meeting. A discrepancy meeting is when a department reviews a scan when a different opinion is reached retrospectively.
78. In line with our Principles for Remedy, the Trust’s actions provide appropriate service improvements.
79. However, the response does not apologise for the distress this knowledge caused. It should do so in line with our Principles for Remedy and have therefore recommended it apologises.
80. We acknowledge how devastating this experience has been for Mrs A and recognise the heartbreak she has been through.
Follow-up surgeon appointment in May 2022 81. Mrs A complains the surgeon arranged a follow-up appointment two-weeks after the cancer diagnosis on 9 May. She says in this second appointment the surgeon repeated information they already knew. She feels this meant the Trust did not refer Mr B for treatment as soon as it could have done.
82. Good medical practice sets out that doctors and surgeons must give patients information they need to make decisions about their care. This includes the patient’s condition, its likely progression and options for treatment.
83. An MDT on 9 May looked at the CT scans and confirmed Mr B had a colorectal cancer that had spread quickly. A study of Mr B’s cells (a histology) suggested the cancer had not started in the bowel and recommended waiting for further analysis. The MDT plan was for a PET scan, but Mr B would be ‘likely for palliative chemo.’
84. A PET scan is an imaging technique that uses a small amount of radioactive material injected into the body. The material accumulates in areas of high metabolic activity, such as tumours or inflamed tissues, and is then detected by the scanner.
85. Mr B and his wife met a colorectal cancer specialist nurse later that day. The nurse shared the diagnosis of a potentially advanced cancer, and explained the next step was a PET scan.
86. The MDT reviewed the PET scan results on 23 May. It confirmed Mr B had cancer in his liver that had spread from elsewhere (metastases) and which had progressed rapidly since the last MRI. It also found Mr B’s colon tumour had progressed too.
87. Tests on the tissue cells (immunohistochemistry) suggested the cancer had started in his liver, gallbladder or bile ducts because of the high CA 19-9 result in his blood test.
88. The MDT on 23 May planned to discuss further at a specialist MDT the following day, but decided Mr B’s treatment would be palliative chemotherapy. The surgeon met with Mr B that day and explained this.
89. The Trust explained it knew about Mr B’s cancerous tumour in the bowel when it met him on 9 May. However, it was unclear if his cancer had started in the bowel or spread from somewhere else.
90. It added the most recent CT scan indicated the cancer had spread to the membrane surrounding the abdominal organs. However, CT scans are not well-suited to identifying this so further tests were needed, which was the reason for the PET scan.
91. The Trust said although it had arrived at a likely diagnosis on 9 May, it needed to establish whether any curative options were available before starting palliative treatment. This was the reasons for the further test and follow-up appointment two-weeks later. Our adviser explained the further tests were appropriate.
92. The follow up appointment on 23 May allowed the surgeon to share the results of the further tests. They explained the progression of Mr B’s cancer and the treatment for it. Therefore, the meeting was in line with Good medical practice.