Complaint about follow up colonoscopy
22. BSOG IBD pandemic guidance from April 2020 said that due to the COVID-19 pandemic there will be significant changes to routine IBD services. It set out that there was no set plan for how frequently IBD patients should be reviewed but it identified hospital services are being reorganised to better deal with severe COVID-19 infection. Elective work is suspended to maximise staff and space for acute admissions.
23. It said clinical appointments should be conducted by telephone where possible. They identify there will need to be an IBD nurse phone and email helpline to manage and support patients having flare up of their disease and to answer questions. There should be capacity for patients to have urgent review if needed in a safe clinic.
24. BSOG endoscopy guidance advised that all but emergency and essential endoscopy (an umbrella term for tests that include colonoscopy) must stop.
25. As set out in paragraphs 12 in June 2020, the consultant had planned for the IBD nurses to review Mr P in 12 months. This was not a plan to perform a colonoscopy but rather they would revisit the discussion of Mr P having one at that review.
26. In September 2020, Mr P’ GP wrote to the IBD team as he had developed a new iron deficiency anaemia. The consultant responded providing advice on how to replace his low iron and that they would usually arrange a colonoscopy. However, they would not arrange this at that time as during the discussion on 1 June, when they had discussed the risks and benefits of colonoscopy, Mr P had chosen not to have it.
27. The consultant said anaemia may be due to flare of his disease but there remained a risk of ulcerative colitis or malignancy. They said if Mr P wished to have those definitively ruled out, the GP should let them know, otherwise they would review Mr P as planned (around June 2021). We have seen no evidence the GP or Mr P contacted the gastroenterology team to request this.
28. In November 2020, the Trust was experiencing difficulties due to the COVID-19 pandemic and unforeseen circumstances within the IBD team. This meant appointments were going to be delayed. The IBD team wrote to Mr P to inform him of the likely delay.
29. Our gastroenterology adviser said local units were left to determine how best to manage, with their resources and considering the impact on their local services from COVID-19. Such delays and letters, as those seen by Mr P, were common across the NHS at this time due to backlogs caused by the COVID-19 pandemic.
30. We can see that when notifying Mr P of the delay in review appointments, the Trust also provided advice to him. It set out the importance of contacting the IBD advice line with any symptoms he was concerned about and that he should not wait for his appointment if he needed more urgent advice.
31. It was line with the BSOG guidance and the circumstances at the time, to delay Mr P’ review which had been planned for June 2021 and to reschedule this for March 2022. The team advised Mr P where and how he could seek advice if things changed. We hope this reassures the complainants.
Complaint about response to GP and Mr P
Advice request on 18 February 2022
32. NICE guidance outlines when patients should be referred using a suspected cancer pathway referral for colorectal cancer.
It says:
• Refer people using a suspected cancer pathway referral (with an appointment within 2 weeks) for colorectal cancer if they are aged over 60 and have unexplained iron-deficiency anaemia
• Refer people using a suspected cancer pathway referral (for an appointment within 2 weeks) for colorectal cancer if they are aged over 60 and have unexplained changes in their bowel habit.
• Refer people using a suspected cancer pathway referral (for an appointment within 2 weeks) for colorectal cancer if they are aged over 40 with unexplained weight loss and abdominal pain.
• Consider a suspected cancer pathway referral (for an appointment within 2 weeks) for colorectal cancer in people aged under 50 with rectal bleeding and any of the following unexplained symptoms or findings: · abdominal pain · change in bowel habit · weight loss · iron-deficiency anaemia’.
33. In February 2022, Mr P’ GP contacted the gastroenterology service seeking advice as he had been having intermittent and short-lived abdominal pain since November 2021. The GP explained Mr P had not lost any weight, and his bowels had firmed up after the festive period.
34. This request for advice did not indicate Mr P had any red flags such as weight loss, anaemia or blood in his faeces. The IBD team advised that Mr P should await his appointment the following month but to contact the team if his symptoms worsened.
35. Mr P’s calprotectin (a protein found in the bowel) was moderately raised. Our gastroenterology adviser said this was suggestive of some active inflammation in the bowel, and that the firming up of Mr P’s stools could account for his short-lived pain.
36. Although Mr P did have some bowel changes, they were not unexplained in the context of someone with Crohn’s disease. Mr P did not meet the criteria in the guidance set out in paragraphs 32 to a suspected cancer pathway referral.
37. We have seen no indication Mr P required a more urgent appointment at this time.
Advice on 22 March 2022
38. On 22 March, Mr P called into the advice line wanting to discuss recent bowel changes. He had initially started with quite intense abdominal pain with frequent and urgent loose stool, particularly when eating. On the day of the call, which appears to have taken the place of his planned review, his pain was more of a discomfort, and he was now moving more formed stool once a day.
39. Our gastroenterology adviser said at this time Mr P had some features which could indicate the possibility of colorectal cancer. This included intermittent change in bowel habit and abdominal pain.
40. However, Mr P was not taking any Crohn’s treatment at that time, his calprotectin was raised (indicating inflammation) and he was fatigued. Although we know he was later found to have bowel cancer, our gastroenterology adviser said the evidence at the time made Crohn’s related inflammation the most likely diagnosis. Due to the recent bowel changes, a colonoscopy was indicated and Mr P agreed to have this. The Trust arranged this as a surveillance colonoscopy.
41. If Mr P had red flags such as anaemia, weight loss or rectal bleeding, he would have needed a more urgent colonoscopy. The records show the team noted Mr P was fatigued and arranged blood tests. They have also documented that Mr P did not have blood or mucus in his stool. This demonstrates they were considering the red flags of anaemia and rectal bleeding.
42. However, the records do not mention whether Mr P had any unintentional weight loss. This is important, not only because it is a red flag for possible cancer but also because of the potential for malnutrition for patients with IBD. BSOG IBD management guidance sets out the importance of considering unintentional weight loss in such patients.
43. Not considering if Mr P had any weight loss was not in line with the BSOG IBD management guidance and the NICE suspected cancer guidance and is a failing.
44. We set out our views on the impact of this failing at paragraph 50.
8 April 2022
45. Mr P contacted the advice line again. He had ongoing pain, for which he was taking co-codamol (a pain relief medication combining paracetamol and codeine) two or three times a day. His pain the previous day had been severe, but he had not opened his bowels for four days until then. Since doing so, he explained he had not had abdominal pain but was concerned it would return.
46. The IBD team wondered if he had become constipated and then taking co-codamol had exacerbated this. They advised him to increase his fluids and prescribed him Pentasa (a drug used to treat colitis and Crohn’s disease.
47. By this stage Mr P had contacted the IBD advice line with worsening symptoms over a two-week period. This was unusual for him as he had rarely had contact with the advice line. Our gastroenterology adviser said considering this, the team should have arranged an urgent appointment to see Mr P in the IBD clinic so that he could have had an abdominal examination.
48. This would likely have led to a CT scan of his abdomen, as this is the most appropriate test to investigate abdominal pain, rather than a colonoscopy. A CT would be useful prior to an urgent colonoscopy to rule out anything in the bowel that might cause complications during the colonoscopy.
49. Not arranging an urgent appointment for an abdominal examination was contrary to The NMC Code which says nurses should accurately identify, observe and assess signs of normal or worsening physical health in the person receiving care. This is a failing.
Impact of the failing failings
50. As set out in paragraph 42, the IBD team should have considered if Mr P had weight loss on 22 March.
51. The complainants say their father had begun to lose weight from December 2021. The records from May 2022 say Mr P had lost seven pounds in weight at that stage. It is possible he had lost some weight by 22 March 2022, however, we do not know how much and if this would have been of significance.
52. It is possible that if the team had considered if there was weight loss on 22 March, it would have led to a more urgent colonoscopy or CT scan. More certainly, by 8 April, there should have been urgent investigations completed, as set out in paragraph 47 and 48.
53. Based on what would have happened on 22 March and 8 April if the failings had not happened, Mr P could have been diagnosed with bowel cancer at the beginning to mid-April rather than in May.
54. Our gastroenterology adviser said Mr P’s cancer would still have been advanced if he had been diagnosed in April rather than May. Earlier diagnosis in April would not have altered the treatment he received and would not have prevented Mr P’ death.
55. Although there was no clinical impact on Mr P, we recognise the delayed diagnosis affected his family. It caused them worry at the time when he was experiencing symptoms which were not investigated, and after his sad death, left them with questions about whether things might have been different if he had been diagnosed sooner.
56. At the end of this report we have set out the recommendations we make to the Trust to put this right.
Complaint about deterioration on 20 September
57. RCP NEWS guidance explains the NEWS was developed to improve the detection of, and response to clinical deterioration in patients with acute illness. It uses physiological observations (breathing rate, pulse, blood pressure, temperature, oxygen level, and consciousness) to calculate a score. That score then indicates the frequency of clinical monitoring required and the urgency of clinical review.
58. The guidance says that where there is a total score of 0 to 4, there is a low clinical risk and NEWS check should be repeated in four to six hours. If the NEWS is 5 or 6, or if there is a score of 3 in a single parameter, there is a medium clinical risk and the scores should be rechecked within the hour.
59. The records show staff checked Mr P’s NEWS at 5.43am on 20 September and found he had a score of 1. In line with the RCP guidance, staff should have checked his NEWS again within four to six hours, by 11.43am. This did not happen.
60. Doctors reviewed Mr P on the morning ward round and then on the oncology ward round at 1pm. At this later ward round, the doctor had noted staff should ‘watch for fever’ and planned for slow intravenous (IV) fluids.
61. There is some evidence that Mr P’s NEWS was checked by someone at 1pm, with a score of 2. However, the record of it is incomplete, with only one observation documented. The blood pressure documented would have resulted in a score of 0. Therefore, we do not consider it is a complete or reliable NEWS check.
62. The next NEWS which was fully documented on the NEWS chart was at 1.38pm. The complainants told us their mother had booked to visit the ward from 2pm to 3pm and it was her presence and her raising concern about Mr P which prompted staff to check him.
63. We do not know if staff had already completed the NEWS before Mrs P arrived, or if she arrived a little while before her scheduled visiting time and alerted staff. However, we can see staff completed this NEWS check almost two hours later than it should have been. This was not in line with the RCP guidance and is a failing.
64. When staff completed this NEWS, Mr P’s score was 3. This was due to his raised temperature and heart rate. RCP guidance says the score of 3 is low clinical risk. The clinical response based on this is for a nurse to decide whether it requires escalation of care to the medical team.
65. We can see that when the nursing staff identified the raised temperature at 1.38pm, they appropriately contacted the medical team. A doctor reviewed Mr P around an hour later. They planned for him to have an ECG, chest X-ray and paracetamol. Staff completed the subsequent NEWS that day in line with the RCP guidance.
66. We acknowledge it was upsetting for Mrs P to see her husband looking more poorly when she arrived at the hospital. We recognise the concerns around this have caused uncertainty to the complainants at what was already a difficult time for them.
67. Our nursing adviser said that although there was a delay in staff completing NEWS check, they did not miss a deterioration in his clinical condition. Mr P remained at low clinical risk and had been reviewed by a doctor. Although he required fluids through a drip, a doctor had already identified the need for these during the earlier ward round and these were not due to a delay in the NEWS checks. We hope this gives some reassurance to Mr P’ family about their father’s condition.
68. We are proposing to make a recommendation below for the Trust to put right the distress the complainants have experienced.