Failure to diagnose angiosarcoma Failure to realise the severity of symptoms
20. Because these two point are interconnected, we decided to look at them together. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
21. Mrs E says the Trust failed to diagnose her father’s angiosarcoma in time. She says they first approached the Trust in February 2023, however, the angiosarcoma was not diagnosed until September 2023. She says the Trust failed to realise the severity of his condition and ignored red flags such as anaemia and unexplained weight loss advising them there was no sinister cause for the pain.
22. The Trust says they investigated symptoms appropriately via scans, biopsies and tests. The Trust maintained their actions were correct but explained the indications were for prostate cancer and it was only later it became apparent he also suffered from angiosarcoma.
23. We note, regarding the mention of anaemia we have not been able to find any reference in the records that Mr A was suffering from that. As such, we are unable to say now whether this was shared and not taken on board, or whether the Trust was not aware of this.
24. We have focused our consideration on whether signs of angiosarcoma were not acted upon. Sarcoma UK advises angiosarcoma is a rare type of sarcoma (cancer) that develops from the cells lining the blood vessels. The NHS website indicates diagnosis is done by a specialist doctor usually through physical examination, scans (X-ray, MRI, CT or PET) and a biopsy.
25. Therefore, when a patient is suspected of cancer, we would expect the Trust to examine, arrange for tests including scans and biopsy to diagnose whether it is cancer and what type. We have looked at the records to see what happened. We appreciate this was a complicated presentation and have taken that into account.
26. Mr A had a longstanding diagnosis of CLL (leukaemia), and we can see there was some question whether any sinister cause may be a spread of that, or a new primary cancer. The National cancer waiting times monitoring dataset guidance advises a Trust has to provide treatment within 31 days from the day a patient is diagnosed with cancer. If there is a secondary cancer (spread of existing cancer), then the aim is to receive treatment for that secondary cancer within a 62-day period.
27. Mr A presented at A&E on 22 February 2023, with symptoms of pain in his right hip, weight loss and difficulty walking. Both our oncology and orthopaedic advisers agree the symptoms he initially presented with are not specific to angiosarcoma. They also agreed however, they could be symptoms of cancer.
28. He was referred for scans and had a prostate MRI scan on 14 March 2023, and a SPECT scan on 15 March. He was also seen by the urology department on 4 April 2023, who referred him for a pelvis MRI which was booked on 28 April 2023.
29. He was also seen by an orthopaedic consultant on 12 April 2023 regarding a potential problem with his hip replacement. During examination this problem was excluded but his weight loss was noted and directed to both his GP and CUH (re general CLL review) to consider further. The orthopaedic consultant advised there was no sinister cause for the pain. We appreciate the comment of no sinister cause for the pain was in hindsight factually incorrect.
30. The records from the April 2023 orthopaedic consultation show Mr A was examined and the belief was the pain in walking was due to a possible fracture. The prostrate MRI results which were previously done were not ready and therefore could not be reviewed.
31. However, we can see the orthopaedic consultant discussed the case with a consultant radiologist who advised the appearance was that of an insufficiency type fracture. The records also note there was some generalised bone marrow signal abnormality, but this was thought to be due to his CLL (Chronic lymphocytic leukaemia – a rare type of cancer that affects the blood and bone marrow) which was being managed by Cambridge University Hospitals Trust.
32. In our view, this shows there was some investigation to identify the cause of the problem. However, in hindsight we understand the angiosarcoma was causing the pain.
33. Further to this, there was a urology MDT on 24 April 2023 which reviewed Mr A’s case. As he had the pelvic MRI scan booked for 28 April 2023, the MDT decided to reconvene in early May 2023 once the pelvic MRI results were ready. As these would help identify the cause of the problem.
34. Mr A had the pelvic MRI on 28 April and the results showing a pelvic lesion were discussed at the MDT on 11 May 2023 and was referred for a prostate and pelvic lesion biopsy. Those were done on 23 and 25 May respectively. The prostate biopsy confirmed prostate cancer on 5 June 2023. The pelvic lesion biopsy was unusual, so it was sent to CUH for further checks.
35. Our adviser explained the pain issue was picked up by the MDT, on 24 April 2023, (12 days later) who advised they needed the pelvic repeat MRI results. This was done on 28 April, and the MDT reconvened on 11 May, and he was referred for further exploration (biopsies) in May 2023. Therefore, there is a small delay of 12 days which the referral for biopsy could have been requested earlier. However, we note the pelvic MRI results were not ready at the time.
36. The prostate biopsy was tested and confirmed prostate cancer on 5 June 2023 and received treatment on 29 June 2023 which is within the National waiting times.
37. However, the pelvic lesion biopsy was unusual, so it was sent to CUH for further testing. On 12 June 2023, CUH reported back to the Trust the possibility of malignant vascular neoplasm or angiosarcoma. Our understanding is this was an accidental finding or secondary cancer. Therefore, based on the National waiting times, they had 62 days to confirm the diagnosis and provide any appropriate treatment for the angiosarcoma. Diagnosis was made on 4 September, meeting the diagnostic target.
38. We have identified a 12-day delay in which biopsy referrals could be made earlier. To assess this, we enquired if this delay had any impact. According to our orthopaedic adviser there is no indication this delay had any impact as further specialised testing from other Trusts was necessary to diagnose angiosarcoma. However, given this was picked up by the MDT and the referrals were made as well as the angiosarcoma diagnosis required specialised testing from different Trusts, we are satisfied it did not have any impact on Mr A’s care progression.
39. We can see CUH reported on the pelvic biopsy on 11 June 2023. In its report it explained there was a destructive mass centred on the bone and raised the possibility of a malignant vascular neoplasm such as angiosarcoma. However, it stressed that further external molecular testing (RNA test) was also necessary, and this would take at least four weeks. CUH sent the sample to Royal Marsden Trust on 15 June 2023. We note, on 29 June 2023, Mr A’a care was transferred to Oncology, and he began treatment for prostate cancer.
40. According to our oncology adviser, once prostate cancer was confirmed, it would become the Trust’s priority. Therefore, the working diagnosis would be that the pelvic lesion was metastasis of the prostate cancer. We can see the Trust was acting on the prostate cancer whilst waiting for the results of the specialised testing to determine what the lesion was.
41. We note it was not until around 7 August 2023 when the Royal Marsden Trust informed CUH that there was not enough sample for the specialised testing. We questioned whether the Trust would have known about this. Our oncology adviser explained the Trust would only have known about the insufficient sample size once feedback had been given by CUH.
42. We know by that point; the Trust had referred Mr A to RNOH to explore the nature of the lesion (the referral was done on 26 July 2023). The samples were sent to RNOH on 22 August 2023 and the angiosarcoma diagnosis was made on 4 September 2023.
43. Overall, we have not identified any indications of failings in the diagnosis of angiosarcoma. Mr A’s presenting symptoms were not angiosarcoma specific. We are satisfied the Trust appropriately investigated the general cancer symptoms he was presenting with and as a result, prostate cancer was diagnosed, and appropriate treatment was initiated. We do appreciate Mr A’s family believe this process took too long. We discuss this in more detail below.
44. When exploring the pelvic lesion, angiosarcoma was raised as a possibility but it required specialised testing which was outside the Trust’s control. We understand the timings, or the success of those tests were not in the Trust’s control either and therefore, we are unable to find failings in this case. As such, we can see the Trust appropriately explored the cause of his overall symptoms.
Delays in referrals/ not chasing test results
45. Mrs E says there were delays in referring him to other hospitals and not chased tests results. Our understanding is this relates to the period after the biopsies were done in end of May 2023.
46. The Trust maintained testing was done appropriately and samples were sent to other hospitals for specialised testing. It explained that once the samples were sent out, it was out of its control as to when they would be reported.
47. We could not identify any relevant guidelines regarding the referrals and therefore we have relied on our advisers’ opinion to form a view on this point. They also referred us to the National cancer waiting times monitoring dataset guidance which advise a Trust has to provide treatment within 31 days from the day a patient is diagnosed with cancer. If there is a secondary cancer or an incidental finding of a secondary cancer, then the aim is to receive treatment for that secondary cancer within a 62-day period.
48. We have looked at the records to see what happened. The diagnostic journey in this case was rather complex as Mr A suffered from both prostate cancer and angiosarcoma. We have tried to simplify things and explain when and where the samples were sent.
49. Further to prostate cancer being confirmed on 5 June, the Trust noted the pelvic lesion biopsy was unusual, so it was sent to CUH for further testing. On 12 June 2023, CUH reported back to the Trust the possibility of malignant vascular neoplasm or angiosarcoma. Our understanding is this was an accidental finding or secondary cancer. Therefore, based on the National waiting times, they had 62 days to confirm the diagnosis and provide treatment for the angiosarcoma.
50. However, CUH explained further molecular testing (RNA testing) was necessary to verify this, and the sample was sent to the Royal Marsden Hospital Trust on 15 June 2023. CUH advised testing could take another four weeks.
51. We queried whether further testing was necessary when there was an initial report for angiosarcoma on 12 June 2023. Our urology adviser said the test was essentially to rule out a metastasis. Therefore, the 12 June 2023 CUH report was not confirmation of angiosarcoma and therefore specialised testing was necessary.
52. According to our oncology adviser, the working diagnosis was that the pelvic lesion (later diagnosed as angiosarcoma) was likely a metastasis from the prostate cancer. Our oncology adviser explained the prostate cancer was the priority, and clinicians will not treat for something unless there is confirmation the patient is suffering from it. In other words, they would need to diagnose/confirm angiosarcoma before they begin treatment for it. In this case, the focus was on the prostate cancer, and they were testing to see if the pelvic lesion had spread from the prostate cancer.
53. Mr A was seen on 20 July 2023 and Mrs E explained by that point, he was unable to walk and was in pain. The Trust made an urgent referral to RNOH on 26 July 2023. The Trust accepted there was a 6-day delay in sending the referral and explained the referral was dictated on 20 July 2023 but was due to annual leave of staff was not typed and sent until 26 July 2023. Our oncology adviser explained there was no impact from this small delay.
54. RNOH requested the pelvic biopsy samples and round 8 August 2023, the Trust liaised with Cambridge University Hospitals Trust, to get them. It was at this point CUH informed the Trust that Royal Marsden Trust said the quantity of RNA sent did not meet the criteria for testing (not enough sample). The slides were then sent to the Trust on 18 August 2023 and then to RNOH on 22 August 2023. RNOH diagnosed Mr A with angiosarcoma on 4 September 2023.
55. We have looked at both the way the test was done (number of samples taken) and who was responsible for chasing them.
56. Regarding the number of samples taken, the Royal Marsden Trust said they did not have enough sample to test. Our urology adviser pointed us to a consensus statement of the British Journal of cancer (BJC) ‘UK guidelines for the management of soft tissue sarcomas’. In than it explains that when testing for soft tissue sarcomas, multiple cores samples should be taken to maximise diagnostic yield. The guidelines do not state a specific number of samples that should be taken.
57. In other words, there is no set number or size sample that should be taken for biopsy. Our understanding is multiple samples are taken to increase the chances of finding something, but this is never guaranteed. In this case two core samples were taken which in our adviser’s view would be appropriate. Therefore, although we accept the sample taken did not yield any result, we cannot see any failings in the number of samples taken.
58. Regarding chasing the test results. According to the British Medical Association, ‘Acting upon electronic test results’, traditionally a clinician who orders a test is responsible for receiving and acting upon the results once available. Although chasing test results is not mentioned specifically, other NHS sources like South West London ICB- Park Road Surgery comment that the British Medical Association, the Ionising Radiation (Medical Exposure) Regulations, and the Royal College of Emergency Medicine all agree that the responsibility in chasing test results rests with the person requesting the test, so that if a doctor asks for a test they need to chase up and act on the result themselves.
59. The Trust was the one who initially ordered the pelvic lesion biopsy and sent it to CUH for tests in June 2023. CUH advised they would send the samples to the Royal Marsden Trust for RNA testing, and this may take up to four weeks. The samples were sent to the Royal Marsden Trust on 15 June 2023 with an estimated waiting time of around four weeks. Therefore, the expectation would be that the Trust that ordered the tests has the responsibility to chase them. Given the original referral was done by the Trust, the responsibility to chase the results remained with the Trust.
60. As the results would take around four weeks, we would expect them to be available (with a result or not or not enough sample) around mid-July 2023. We would also expect the Trust to chase the results around that time. However, they were not chased until around 3 weeks later (8 August 2023).
61. Based on the National waiting times, the aim would be to diagnose so to get treatment within 62 days therefore, the reporting of the RNA testing should have happened within that period. However, the diagnosis took 59 days (12 June when the samples were sent for RNA testing till 4 September when diagnosed). We note Mr A had been placed on palliative care on 21 August 2023. Therefore, our understanding is the treatment would not be suitable at that stage.
62. Nevertheless, in our view, despite the complex diagnostic journey, the responsibility to chase any results remained with the Trust as they made the original referral. The Trust explained they could not be held responsible for the time it took to report on the results. We agree with this statement as producing the test results if outside the Trust’s control. However, we consider there was a missed opportunity to chase the results earlier than 8 August 2023. We will consider the impact of this missed opportunity below.
Poor communication 63. Mrs E says there was poor communication and neither her father nor the family were informed of tests, delays and that there was confusion as to who was dealing with her father’s care.
64. The Trust acknowledged her father was not updated as much as he could have been. It clarified that they would be not much to update him on as they were waiting reports from the other Trust’s however, this would have given him a reassurance and kept him in the loop.
65. According to the GMC guidelines, Domain 3: Communicating, partnership and teamwork, advises clinicians to be give the patient and their families information they want and need in a way they can understand. Therefore, we would expect the Trust to keep both Mr A and his family updated regarding his condition and for any action taken regarding treatment.
66. The files do not contain much information regarding updates. However, there is a letter from 3 July 2023 explaining the Trust was waiting for test results. There are also referral letters from Oncology around 20 July 2023 explaining they saw Mr A and explained this condition and that he would be referred to the sarcoma team at RNOH. It is unclear if the family was with him at the time.
67. Mrs E shared email correspondence from later July and August 2023 between the family and the Trust as well as CUH asking for updates. The correspondence also includes an email from Mr A’s GP to the Trust from 31 July 2023 which explains the family has had no update regarding the pelvic lesion biopsy and they have been directed to CUH and RNOH with no additional information. The correspondence shows the Trust did not have an update for them as the test results were still pending.
68. In our view, this was a complex case and Mr A’s rapid deterioration was understandably a great concern to his family. This meant they were chasing any possible updates regarding his condition and given the tests were outside the Trust’s control, it would not be possible to provide them with any significant update. Whilst communication was not optimal (given the complex diagnostic journey in this case) we cannot say it fell below the standard we would expect to see. We appreciate the Trust has acknowledged they could have done better keeping the family updated.
Complaint handling 69. Mrs E says there was poor complaint handling. There were inaccurate information and wrong dates from the responses. Mrs E explained the Trust advised they saw her father on 8 August 2023 however, she says this is wrong as on that day they called him and there was no visit. She also questioned when the urgent referral to RNOH was sent in July 2023.
70. The NHS Complaints Standards states an effective complaint handling system should ensure a complaint is investigated in a thorough and fair manner and provide a fair and accountable response. We reviewed the responses provided by the Trust and looked to see if it adhered to NHS Complaints Standards.
71. Reviewing the responses provided by the Trust it is evident to see the failed to recognise Mr A’s death in their first response. We understand, given Mr A’s rapid deterioration and the complexity of his diagnostic journey and eventual death, this error would undoubtably read as uncaring. We can see the Trust apologised for this in their subsequent response and explained as Mr A did not die in the Trust, they could not have known that at the time of the first response.
72. Regarding the urgent referral to RNOH, the Trust explained whilst it was dictated on 20 July it was typed and sent on 26 July 2023, and the delay was due to staff annual leave. As we mentioned above, this delay did not have any impact in Ms A’s condition.
73. Regarding the accuracy of the information about the appointment on 8 August 2023, Mrs E explains there was never an appointment on that day. The records show a handwritten clinical outpatient note dated 8 August 2023. It is unclear whether this was about a call or an in-person appointment. Whilst we do not dispute Mrs E’s account of events, based the available evidence, the Trust’s response was not factually incorrect.
74. The Trust’s response sets out what happened and reflects on the family’s experience. It has apologised for any errors in previous responses and apologised for the delay in July 2023. We are satisfied the Trust investigated Mrs E’s concerns and responded in line with NHS Complaints Standards.
Impact 75. We have not identified any delay in the referrals themselves. The samples were sent for RNA testing in mid-June and could have been chased earlier than they were. Had this been done then (instead of 8 August 2023) it is likely the Trust would know there was not enough sample to yield a result, and possible action could have been taken sooner.
76. However, we note that around that time 20 July 2023 Mr A was seen by Oncology and referred to RNOH on 26 July. This referral could have happened with the knowledge of no result and therefore, RNOH could have requested the samples earlier and therefore diagnose him around two-three weeks earlier than 4 September.
77. We appreciate Mrs E says that due to delays in referral, her father’s angiosarcoma was left undiagnosed and untreated and there was a missed opportunity for treatment and potentially extend his life.
78. Whilst we believe earlier progress in diagnosis would have given more reassurance to the family, we have no evidence to suggest it would have any impact on his prognosis. In other words, whilst an earlier diagnosis may have been possible by two to three weeks, it is highly unlikely the angiosarcoma would have been treatable by that stage. This is because we know on 21 August 2023 (around two weeks prior to his diagnosis on 4 September 2023) he was put on palliative care. This suggests how advanced the angiosarcoma was, and it is unlikely the delay would have had any impact. However, we do accept the delay in chasing the results resulted in the family’s distress.
79. Mrs E explained she wants acknowledgment of failings, service improvements and an apology. The NHS complaint standards advise that when things go wrong, the Trust should give a meaningful and sincere apology. We have therefore considered what should be done to address what we have seen.
80. We appreciate Mrs E was deeply affected by her father’s death. We believe the failings we have seen may have slightly aggravated the natural distress she would have felt with his passing. However, we could not link the failing to his death. As we only link the distress to the Trust not chasing the tests results sooner than they did we consider an apology would be appropriate in line with the NHS Complaint Standards and our SOI. We have asked the Trust to apologise for the impact the failing had on Mrs E, and they have agreed to do so.
81. There is no doubt Mr A suffering from two cancers at the same time, one being a rare angiosarcoma, made this a complex case to diagnose. We acknowledge the long diagnostic journey along with his rapid deterioration was very upsetting to the family. We hope our investigation can reassure them no failings happened in the care of Mr A.