Diagnosis 30. Ms M complains despite numerous scans and biopsy results since 15 February, the Trust failed to identify her father had cancer until May.
31. We considered the timeline of events from the CT taken on 15 February. This scan is very indicative that Mr B had cancer. Whilst it did not provide information to allow the Trust to clinically confirm the diagnosis, our adviser says the scan provides sufficient evidence of there being some form of cancer present.
32. This is supported by handwritten records made the same day by the specialist registrar (SpR). They note the findings of a mass, that it was likely inoperable and questioned the possibility of different types of cancer being present. This same handwritten entry documents that Mr B was informed. The SpR documents explaining the CT findings to Mr B, with it noted he was ‘understandably upset’.
33. At this time, records document Mr B’s CA 19-9 was over 6000. CA 19-9 is a tumour marker, primarily associated with pancreatic cancer. Our adviser says at such high levels, this, along with CT findings and Mr B’s symptoms, very likely indicated a cancer.
34. And yet, we must be clear in our view, that the Trust’s response is accurate: the biopsy results in May were the first time that cellular level cancer – tissue typing – was seen. This was the first time a clear and confirmed diagnosis could be made, and not before. We do not find evidence to suggest the Trust failed to identify Mr B’s cancer, as Ms M contends. We find that from the information known on 15 February, the Trust was aware that all clinical indications pointed towards the presence of a cancer, and it took action to reach this clear and confirm diagnosis.
35. We find the steps and investigations taken by the Trust in the order they occurred, were all reasonable. Our adviser explains there is no specific guidance that sets out the exact course of action to take, as this is dependent on investigation results, the patient’s symptoms, the input from specialists and outcomes of each MDT, etc.
36. GMC Guidance says health practitioners should adequately assess the patient’s conditions, taking account of their history, their views and values, and where necessary examine the patient, and then promptly provide or arrange suitable advice, investigations or treatment where necessary. From the timeline of events in Mr B’s case, our adviser confirms the process and procedures that were followed were in line with GMC Guidance.
37. In terms of them being ‘prompt’, we find these actions were appropriately timely up to 5 March. This is when the consultant gastroenterologist wrote to Mr B to share the ERCP findings. At the previous HPB MDT on 17 February, the MDT pre-empted the next steps after ERCP, stating if brushings were negative, to arrange biopsy. ERCP findings were reported on 1 March and known by the consultant at the time he wrote to Mr B on 5 March, yet the plan for biopsy was not actioned.
38. Ms M says during the call on 21 April, the consultant told her father that his records had not been put on the system, meaning the biopsy had not yet been arranged. We think this should have happened nearly seven weeks earlier, once the consultant became aware of ERCP findings, on 5 March. This would have been in line with GMC Guidance which says providing or arranging suitable advice, investigations or treatment should be done promptly.
39. On becoming aware of the delay, the consultant requested the biopsy on 21 April. This went ahead on 28 April, and results were reported on 3 May. This was timely and prompt. There is no guidance to definitively state the time this should take. Our adviser says it is reasonable to consider biopsy should be taken within two weeks of it being requested and then reported within a further week.
40. Following the timeline as it did happen, once results were reported, the MDT met just two days later, concluding the need for further biopsy. This was timely and reasonable, as the first biopsy results did not report findings conclusive for tissue typing. Our adviser explains this can be the case when the piece of tissue biopsied may not contain cancer cells, hence the need for a repeated test. We find a further delay of one week, as Mr B’s case was discussed again at the next MDT on 12 May, with the same conclusion. Following this, the biopsy was arranged. Reasonably, this should have been done one week earlier.
41. Here we find the biopsy was done two weeks after the request, and results reported one week later, which is timely. These results found cellular evidence of cancer at which point the diagnosis could be made.
42. Having considered the timeline carefully we find two gaps of time, sufficiently significant for us to consider them to be service failure. Had the biopsy been requested on 5 March as was reasonable, giving the two-week period for it to go ahead plus a week to be reported, results could have been known six weeks earlier than they were. Assuming the results reported the same, there would still have been need for MDT discussion and a repeat biopsy. Had the MDT’s requested repeat biopsy been actioned when first determined, this would have reduced the timeline by a further week.
43. If not for these identified delays, we think the timeline could have been reduced by seven weeks, meaning Mr B’s diagnosis could have been made around seven weeks earlier than it was. We have gone on to carefully consider the impact of this.
44. Ms M says earlier knowledge of his diagnosis would have avoided the considerable distress Mr B and family experienced when this was eventually disclosed. We find numerous entries in the records to show Mr B was kept aware of the strong suspicions of a cancer, from as early as the first CT in February 2023. As we address in more detail later in our report, we also find evidence to show he was directly told he had cancer before the conclusive diagnosis was made. That said, earlier diagnosis by seven weeks would have given him earlier awareness of the conclusive diagnosis, and the choice to have informed family at an earlier time.
45. Ms M says an earlier diagnosis may have given her father the option of treatment, a better chance of survival and potentially avoided his death. Very sadly, earlier diagnosis by seven weeks would not have avoided Mr B’s death. Cancer Research UK explains this type of cancer carries a less than 2% survival rate over 5 years. In Mr B’s case, even at the CT scan of 15 February, the mass was identified as inoperable, meaning very sadly his death from it could not have been avoided, even with this earlier diagnosis.
46. In terms of treatment, our adviser explains even with an earlier diagnosis of seven weeks, Mr B’s treatment options would always have been palliative. He was offered palliative chemotherapy after diagnosis and was therefore not restricted or denied the option of the treatment he would have been offered those seven weeks earlier.
47. Records show he was given an understanding of a possible prognosis both with and without palliative chemotherapy, along with an understanding of the risks, and given information to consider. Our adviser says the prognosis given to Mr B would likely have been similar, even had that discussion taken place seven weeks sooner. Any difference in the timeline would sadly have been marginal.
48. In summary, we do not find there was any clinical impact to Mr B as a direct result of this delay, but do find it delayed him knowing his definitive diagnosis. We do not think this led to the extent of the impact Ms M is worried about, as we can see her father was frequently made aware of the possibility of cancer, and told he did have cancer sooner than she may have been previously aware. It remains Mr B was left with some uncertainty for longer than he needed to have been.
49. In response to the complaint, the Trust said it was sincerely sorry Mr B’s records were not handled in the way they should have been and acknowledged a delay in the time taken to reach a diagnosis. The Trust acknowledged the psychological distress Mr B suffered may have been reduced and apologised for the distress it recognised was caused to Ms M. The Trust said the administrative team had conducted a focused piece of work, reviewing their processes to ensure this does not recur. It also said the HPB MDT now has a regular and reliable tracking system to reduce incidents like this in future.
50. NHS Complaint Standards say organisations should openly identify instances when things have gone wrong, or where services have had an unfair impact, and take responsibility for these. They say organisations should explain why thing went wrong, give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned, and identify suitable ways to put things right.
51. We consider the actions taken by the Trust are in line with the NHS Complaint Standards, in giving a fair and accountable response and promoting a learning culture. In our view, the Trust’s response is proportionate to what went wrong and the actions already taken go far enough to remedy the impact. We do not find there is anything left to remedy, and we consider this matter resolved by the response given and actions already taken.
Consultant’s letter 52. The consultant’s letter of 5 March states: ‘Dear Mr B, The histology from the ERCP I did have come back and there are no cancerous cells seen there. Clearly, this is excellent news. Yours sincerely’. Ms M complains this letter incorrectly advised her father he was cancer-free.
53. As we explained within our earlier background section, the HPB MDT had pre-emptively planned that if ERCP brushings were negative and did not find evidence of cancer, then biopsy was planned to investigate further. Within this letter, the consultant has used language to accurately relay that there were ‘no cancerous cells seen there’, meaning within the part of the body tested by ERCP.
54. We understand the interpretation as Ms M has presented, and the consultant’s comment of this being ‘excellent news’ undoubtedly raised Mr B’s expectations. And yet, we cannot agree that this letter advised her father that he was cancer-free. We recognise the importance of the specifics of language in this type of communication, a sentiment shared by the consultant in his comments to us. As he has stated, he would never have used the phrase ‘cancer-free’ in this context, nor did he within this letter.
55. In his comments, the consultant expressed that whilst the brushings were clear of cancer cells, this in no way overruled all other tests and investigations that were done and still planned for Mr B, as his imaging was highly suspicious for cancer.
56. We also find evidence to show Mr B was made aware of the possibility of cancer throughout. We find numerous entries in the records making clear that from as early as the 15 February CT scan, the Trust told Mr B of the strong suspicion of cancer and that further investigation was required at each step, to investigate this further.
57. We think the consultant should have been more fulsome in explaining that whilst there were no cancerous cells seen from ERCP findings, there remained concern for an underlying, sinister cause of Mr B’s problems, requiring a biopsy investigation. Yet, we cannot agree that the letter advised Mr B he was cancer-free, as is alleged.
58. We recognise the content of this letter led to a misunderstanding in its intention. We can see this was remedied when the consultant spoke with Mr B by phone on 21 April. The consultant’s letter to the GP that same day makes clear that he advised Mr B that he might have cancer. Whilst unfortunate the earlier correspondence had given false hope, evidence shows Mr B was not kept unaware of cancer being a possibility for any extended period, and he had previously been advised of the need for ongoing investigation.
59. Whilst we do not identify this as a failing, we are encouraged by the comments we received from the consultant on this matter and so share them here to provide Ms M further reassurance. The consultant said he had reflected on this issue, acknowledged this misgiving, and stated his wording could have been better. He provided a direct apology for how his letter was received, and said he will take learning for future communication. We are encouraged by this candour and continuous reflective learning.
Informing Mr B 60. Ms M says once the Trust identified cancer on 23 May, it delayed informing her father of his aggressive diagnosis and poor prognosis until 12 June.
61. As we have alluded to in earlier sections of our report, we find Mr B was informed of the strong likelihood he had cancer from the very first scan in February, and we hope to assure Ms M that he was informed of his formal diagnosis without delay.
62. Mr B was admitted in May, before the diagnostic biopsy was taken. An entry made on 5 May notes he was told in radiology that he had a cancer. The laparoscopic biopsy was taken on 23 May, and the day after, an entry notes the clinician explained the findings of surgery to Mr B. It is noted that they were awaiting the histology results, but that the outcome ‘was not good’, that the MDT had said ‘surgery is not an option for his cancer’. Whilst the tissue typing results had not yet returned, records show the Trust told Mr B he had a cancer and the likely outcome, the same day the second biopsy was taken. His awareness is confirmed by an entry on 25 May which notes Mr B said he thought doctors should have identified his cancer sooner.
63. Histology results were reported late on 26 May. An entry on 30 May states the diagnosis of metastatic pancreatic cancer had been made, and that this was explained to Mr B. Another entry this same day notes an upper gastrointestinal surgeon discussed the diagnosis with Mr B. We are assured that the diagnosis was shared with Mr B without delay.
64. On 1 June it is noted Mr B spoke about his living situation and his family, and said ‘no one was aware of my illness’. Mr B met with palliative care on 3 June, and an entry on 5 June notes he asked staff to inform his brother, which they did that same day. The oncology consultant met with Mr B on 7 June noting he was aware of his diagnosis, and this is when Mr B asked for family to be present for discussions about his prognosis. The plan was for a family meeting to be arranged for 12 June, at which we understand Ms M was present.
65. GMC Guidance says health practitioners must give patients the information they want or need to know in a way they can understand. We find the Trust followed GMC Guidance here. The Trust’s responsibility was to tell Mr B, and it was for him to choose to inform relatives. Records suggest this took place at a later time, yet the evidence shows the Trust made timely and appropriate communication with Mr B, without delay.
Stent 66. Ms M complains when her father’s stent failed, the Trust failed to act promptly to replace it.
67. The fractured stent was identified on 26 June. Records show the Trust planned to list Mr B for the necessary procedure to replace the stent, and that it acted accordingly, by making this request of the endoscopy department without delay. It appears there was some confusion from this department as to the date Mr B was listed for the procedure, and then when not listed, he was he was re-listed again. Our adviser is satisfied these actions were sufficiently prompt.
68. There was also a question of whether Mr B was fit for the procedure. As the Trust explained in its response and as our adviser confirms, with a high potassium level, the ERCP would not have been safe to proceed.
69. There is no guidance that says what should have happened here, meaning it is matter of clinical judgement. Our adviser says whilst Mr B was becoming more unwell, this was not solely because of the fractured stent, nor would its replacement have solely resulted in his improvement. The confusion in the procedure lists was unfortunate but we do not see anything to suggest delay in the actions of either the medical team or endoscopy department to constitute a service failure. Even had Mr B been listed sooner, he may not have been deemed fit to proceed on the given day.
70. We acknowledge entries in the records note ‘urgency’, and yet we do not see any evidence the replacement required any clinical urgency. Our adviser explains whilst replacing the stent was a relatively pressing action, it could only be done safely when Mr B’s potassium levels were more normal. As they were not normal, earlier listing on the procedure lists would likely not have resulted in the procedure going ahead at any earlier time.
71. Our adviser concludes the time taken here was not significant in the context of Mr B’s potassium levels and palliative status. It was the correct clinical course of action for the Trust to try and get him as fit as possible first, in case the procedure could then later go ahead.
72. We know Ms M is considerably concerned that her father’s wish to return to Yorkshire was not fulfilled. Whilst we do not identify any failure in the above actions, we have considered this further in attempts to assure Ms M.
73. Even had the re-stenting procedure gone ahead without delay, we cannot say Mr B would have been fit for discharge or been able to be discharged to Yorkshire. Records show concerted efforts by the Trust in liaising with Mr B’s brother and the relevant authorities in attempts to fulfil his wishes. Our adviser explains his was a complex discharge, requiring a number of services and actions to be taken before the physical transfer could safely go ahead, including notes that the family residence in Yorkshire was not immediately ready for his arrival.
74. Prior to his final deterioration, the plan was for Mr B to be discharged to a hospice as an interim measure, whilst the necessary plans for a possible move to Yorkshire could be completed. Sadly, this move was in no way imminent. By adding this further information, we hope to express to Ms M that we do not find her father’s stent was in any way a direct factor in preventing his discharge to Yorkshire.