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University Hospitals Sussex NHS Foundation Trust

P-002608 · Report · Decision date: 1 May 2024 · View University Hospitals Sussex NHS Foundation Trust scorecard
Diagnosis Transfer, discharge and aftercare Complaint handling Delayed Recognition of Deterioration Inaccurate and inaccessible patient records
Complaint (AI summary)
Ms Y complained the Trust missed pancreatic cancer on earlier scans, causing a delayed diagnosis, and failed to offer appropriate support, alongside poor complaint handling.
Outcome (AI summary)
Partly upheld. A scan reporting failure caused a six-month diagnosis delay, leading to distress. Support was adequate, but complaint handling was poor.

Full decision details

The Complaint

5. Ms Y complains about aspects of care and treatment the Trust provided to her mother, Mrs P, before and after she was diagnosed with pancreatic cancer in November 2021. Specifically, she complains the Trust: • did not identify or report on the lesion on Mrs P’s CT scans in May and July 2021 • did not offer her mother the appropriate support following her diagnosis.

6. Ms Y also complains about how the Trust handled her complaint.

7. Ms Y says the Trust missed that her mother had pancreatic cancer and there was a missed opportunity to diagnose it sooner. She says if the Trust had picked this up earlier, she and her mother would have had more time to prepare to say goodbye. Ms Y says the shock diagnosis caused her distress. She did not have time to process the prognosis, and this exacerbated the loss of her mother.

8. She says her mother had to spend her final weeks pushing the Trust for appointments and answers and had to pay for private consultations as a result. She also says the Trust’s complaint handling caused further distress.

9. Ms Y would like the Trust to provide an apology, acknowledgement of failings, service improvements and a financial remedy.

Background

10. In January 2019, Mrs P was diagnosed with multifocal adenocarcinoma in her lungs. This is a type of cancer that involves multiple tumours in the same area of an organ. Her initial biopsy showed the cancer had an epidermal growth factor receptor (EGFR) mutation. EGFR is a protein that regulates cell growth and division. Because of this, Mrs P was treated with targeted therapies for management of the disease.

11. As part of this management, Mrs P had thorax and abdomen scans at the Trust every three months. This was followed by a clinical appointment to discuss the results.

12. On 12 November 2021, following her routine CT scan, the Trust identified a lesion in Mrs P’s pancreas. It reviewed the findings at the hepatobiliary multidisciplinary team meeting (HPB MDT) on 17 November 2021. The MDT considered the cancer was inoperable and did not recommend any active treatment.

13. Mrs P attended her lung oncology clinic appointment at the Trust on 30 November 2021. The doctor told her she had another new cancer in her pancreas. The Trust said this cancer was advanced, and there were no treatment options available. It referred Mrs P to the community palliative care team.

14. Mrs P asked the Trust for further treatment, and the Trust held another HPB MDT on 8 December. The outcome was that there were no treatment options available. Mrs P sought a private second opinion on 16 December. The private doctor felt she was fit enough for a positron emission tomography (PET) scan and biopsy, which she had on 30 December.

15. Following this, the Trust made an appointment for Mrs P to have a HPB oncology appointment on 31 December 2021. Mrs P sadly died on 15 February 2022.

Findings

Identifying or reporting on lesions 19. Ms Y complains the Trust missed that her mother had cancerous lesions present on her CT scan in May and July 2021. She says the Trust failed to report on these, causing a delay in her mother’s diagnosis of pancreatic cancer.

20. The Trust did not report on the lesions at the time. It first reported on the lesions in November 2021. It says it has retrospectively reviewed the imaging and the earliest changes of a pancreatic tumour were visible on Mrs P’s scan of 21 May 2021. It says it was not visible prior to this.

21. The RCR standards set out the purpose of an imaging report is to provide an accurate interpretation of images in a format that will prompt appropriate care for the patient. Imaging reports should relate to findings which are anticipated, but also unexpected. The standards say if there is a significant unexpected finding, reporters should comply with local mechanisms to alert referrers.

22. A radiologist is expected to look at all areas of a scan, not just the areas of interest, and is taught to look at all images for incidental findings. Our radiology adviser has carefully considered if the Trust reported on Mrs P’s images in line with the above. They have also looked at the imaging from before May 2021.

23. They confirm the lesion was not visible on the CT scan taken on 28 July 2020. The next CT scan was on 24 November 2020. Our radiology adviser told us the lesion was visible for the first time here with hindsight, measuring 9mm. Although the lesion is visible, they explain it is quite difficult to see and could have looked to represent fatty infiltration (a build-up of fat). The appearance shows a change from the previous scan, but this must be balanced with knowing what to look for when looking at images retrospectively. Based on this, our radiology adviser says it is likely a reasonable number of radiologists would not have seen the lesion at this time.

24. The next CT scan was on 23 February 2021. Our radiology adviser says the lesion can be seen here, and measures 13mm. Lesions like this can still be difficult to interpret, particularly as the purpose of the scan is to focus on changes in the lungs.

25. When looking at the previous scans, it is much easier to identify on the existence of a pancreatic mass as you know where to look for it from recent scans. This is known as hindsight bias and is frequently encountered by radiologists.

26. Our radiology adviser explains the issue is not whether the lesion was there or not, but whether it was reasonable to be interpreted at the time. Radiologists are reliant on clinical information provided by the referrer to help interpret a scan. This case was a complicated lung cancer follow up scan and the pancreatic lesion was not identified at the time.

27. There is no information on the clinical history on the request to suggest an abdominal problem. The lesion was quite small and difficult to identify and based on this, our radiology adviser says it was present with hindsight but not unreasonable to have not been reported at the time.

28. Our radiology adviser explains the lesion was also visible on the CT scan taken on 21 May 2021 when it measured 20mm. The lesion is identifiable, and had grown when compared to the previous scan.

29. The RCR guidance says radiologist should report on all images of a scan, not just the area of interest. The report shows only the thorax was mentioned in the report and there is no evidence of the upper abdomen being reviewed. Comparing this image to the previous scans shows there are changes from February.

30. As there is no mention of the abdomen, and no evidence it was looked at, it appears this part of the scan was not examined. Our radiology adviser says if a thorough review of this entire scan had been done, this lesion, could have been picked up. This is not in line with RCR guidance, and we have found a failing here.

31. Mrs P had a CT angiogram on 20 July 2021. Our radiology adviser says the lesion is visible if you know to look for it. This scan was specifically being done to look at the arteries in the abdomen and legs, due to Mrs P having developed ischaemia (lack of blood to the leg). It is highly unlikely the pancreatic lesion would have been identified at the time of reporting for this. This is due to the windowing (grey scale) of the scan. This is where the key anatomy in the scan is highlighted, which makes looking at structures other than blood vessels more difficult. As a result, it was not unreasonable to have missed the lesion on this scan.

32. To summarise, the Trust should have identified and reported on the lesion from the scan on 21 May 2021, in line with the RCR standards.

33. Mrs P was told about her pancreatic cancer at the lung oncology clinic appointment in November 2021. We think if the Trust had acted in line with the RCR standards, it is reasonable to conclude Mrs P’s pancreatic cancer could have been identified six months earlier than it was. If this had happened, she would have been referred to the HPB MDT sooner.

34. We sought advice from an oncology adviser, who has very carefully considered if there is any evidence to suggest the outcome might have been different for Mrs P if not for this delay.

35. Our oncology adviser says if Mrs P’s pancreatic cancer had been identified in May, in usual circumstances, the possibility of surgery would have been considered. This would have been in the context of Mrs P’s situation, as she had already been diagnosed with an incurable lung cancer. In the context of a preexisting incurable lung cancer, it is highly unlikely the HPB MDT would have recommended pancreatic surgery.

36. The five-year survival rate for pancreatic cancer is around 5-10% in a patient presenting with no other health issues. Mrs P’s case was very different, and very sadly even with an earlier diagnosis, her outlook would have been significantly lower than this.

37. There are some cancers where surgery may be low risk. Unfortunately, this is not the situation with pancreatic surgery. There are major risks associated with the surgery, including death. Mrs P’s comorbidities (the presence of other conditions) meant her risk was significantly higher.

38. In the circumstances, Mrs P would not have been offered surgery with an earlier diagnosis. We do not think this failing impacted on her chances of recovery and very sadly the outcome would have been the same.

39. This is not intended to detract from the failing we have identified, and we recognise it will be distressing for Ms Y to know there was a chance for her mother to have had her diagnosis sooner.

40. Whilst the outcome would have been the same, we are mindful Mrs P would have had knowledge about her condition and more time to process the news. Ms Y would also have had more time to process the news of a second cancer. There were two lost opportunities for them to have this diagnosis sooner. It is understandable this exacerbated her grieving process, which is ongoing.

41. Ms Y has explained they spent the last few weeks of her mother’s life trying to get answers and ask questions. She says an earlier diagnosis may have avoided some of this, as they could have got this information sooner. We recognise this and acknowledge how upsetting this must be in the circumstances.

42. We have looked to see what the Trust has done so far to put right its mistakes. We do not think the Trust has acknowledged the provisional failing we have identified, or any impact to Ms Y.

43. Our Principles for Remedy say public bodies should quickly acknowledge and put right cases of maladministration or poor service. They say they should use the lessons learnt from complaints to ensure this is not repeated. We have not seen evidence of this, and it is likely we will ask the Trust to take action.

Follow up support 44. Ms Y complains about the support that was offered to her mother after she received her secondary cancer diagnosis in November 2021. She says there was a lack of information, discussion or treatment options.

45. The Trust says when it shared the news with Mrs P in November 2021, the pancreatic cancer was considered inoperable with no active treatment recommended. It says the doctor confirmed Mrs P would be referred to the community palliative care team.

46. The patient experience guidance sets out what to expect when communicating difficult news. It explains professionals should develop an understanding of the patient as an individual and respect any patient concerns.

47. The pancreatic cancer guidance explains doctors should provide the information, support and help the patient needs to manage the impact, which should be relevant, ongoing and tailored to the patient.

48. When a patient is given a diagnosis, this should be in a supportive environment. Generally, depending on the clinical picture, the patient is then referred to oncology, the surgeons or palliative care.

49. The records show when it was identified Mrs P had a secondary cancer in the pancreas, this information was conveyed to her by her lung oncologist at an appointment on 30 November 2021.

50. This news was not delivered by a pancreatic oncologist, however, in the circumstances this was a reasonable decision. This is because Mrs P had a longstanding relationship with her lung oncologist. This discussion was based on the outcome of the HPB MDT meeting discussion. The oncologist explained this was an inoperable cancer, and the MDT did not feel any treatment was possible beyond best supportive care.

51. The specialist MDT had reviewed the pancreas imaging and provided their advice. The doctor explained this and referred Mrs P for the appropriate palliative support going forward.

52. Mrs P raised concerns following this discussion. As a result, her case was discussed again at the HPB MDT on 8 December. The HPB team concluded there was no treatment it could offer but offered a HPB oncology appointment on 31 December. This appointment gave the same recommendation.

53. Our oncology adviser explains the Trust provided the appropriate information to Mrs P, based on the clinical picture after the MDT. Our oncology adviser says when Mrs P’s cancer was identified it was advanced, and sadly could not have been operated on if she had been fit enough.

54. The Trust arranged the appropriate support in line with this circumstance and in line with the above guidance. The Trust referred Mrs P to receive the appropriate support, and when she had concerns it responded by seeking a further discussion, to help provide tailored support for the situation.

55. We were extremely sorry to learn that Mrs P did not feel supported at that time and we are mindful of what Ms Y has told us. We hope this information has provided some assurance that the evidence we have carefully considered suggests this was carried out in line with guidance.

Complaint handling 56. We understand Ms Y also has concerns about how the Trust handled her complaint, specifically around the language used in the complaint response. She says it does not acknowledge where things when wrong and uses statements such as ‘sorry you believe’, rather than properly apologising.

57. As recognised earlier in our report, we have found the Trust should have reported on the scan in May. In its complaint response, the Trust has not clearly explained whether it thinks it should have reported on the lesions at the time or not. The Trust has not recognised this or apologised for it. We have seen a provisional failing here and consider this caused Ms Y further avoidable distress at an already difficult time, in turn exacerbating her grief.

58. Our Principles of Good Complaint Handling say public bodies should be open an honest when accounting for its decisions and actions, and give clear evidenced based explanations and reasons for their decisions. Where things have gone wrong, public bodies should explain fully and say what it will do to put matters right as quickly as possible.

59. We have not seen evidence of this in line with our Principles and it is likely we will ask the Trust to take action as a result.

Our Decision

1. We have carefully considered Ms Y’s complaint about the care her mother, Mrs P received from the Trust before and after she was diagnosed with pancreatic cancer in 2021. We recognise the events complained about continue to cause Ms Y ongoing distress, and we extend our sincerest condolences to her.

2. We have found failings in how it reported on her scan from May 2021. We think this caused around a six-month delay in her receiving her diagnosis. We think there was a missed opportunity for Mrs P and Ms Y to find out about her diagnosis sooner. Whilst we do not think this would have changed the overall outcome, we recognise the distress it caused.

3. We have found the Trust acted in line with guidance when it arranged follow up support for Mrs P after she received her diagnosis. We understand why Ms Y was worried about this and hope our explanation around this part of the complaint provides her with some reassurance.

4. We recognise the lost opportunity for earlier diagnosis continues to cause Ms Y distress and we think poor complaint handling has only added to this. We therefore partly uphold the complaint. We have asked the Trust to apologise and create an action plan to take steps to put this right.

Recommendations

60. In considering our recommendations, we have referred to our ‘Principles for Remedy’. These state that where poor service or maladministration has led to injustice or hardship, the organisation responsible should take steps to put things right.

61. In line with this, we think the Trust should write to Ms Y to acknowledge where it got things wrong within four weeks of the date of our final report. It should recognise the impact this had on her and provide sincere apologies for this.

62. Our principles say that public organisations should look for continuous improvement and should use the lessons learnt from complaints to make sure they do not repeat maladministration or poor service.

63. In line with this, we recommend the Trust should create an action plan within three months of the date of our final report. The action plan should look at the failings we have identified. The action plan should clearly set out: • what the Trust will do, or has since done, to prevent this from occurring again • the name of the person or team responsible for each action • when actions will begin and when they will be completed • how the impact of the actions will be measured and monitored.

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