24. We recognise Mrs B has various concerns about the monitoring of her mother’s cancer, how this went on to develop and subsequent deterioration. We will address her concerns chronologically and relating to each organisation.
Maidstone and Tunbridge Wells NHS Trust 25. Mrs B explains after her mother was first diagnosed with rectal cancer in 2015, she remained under monitoring by Maidstone Trust. She has concerns this Trust missed the recurrence of her mother’s cancer, found in January 2021.
26. Mrs B says they were told Mrs D had a secondary cancer in her lung, but this was not a critical issue to solve immediately and they were told it was under control. When Mrs D was admitted to a different hospital in January 2021, she explains the cancer had spread and she questions how this was missed.
27. The Trust says it is not possible to determine when the cancer recurred. In terms of the prognosis it had previously given, it says it was difficult to predict, as Mrs D was thought to only have a single site of secondary cancer in the lung, and the range of survival for this is wide.
28. Our oncology and radiology advisers have carefully considered if Maidstone Trust was monitoring Mrs D’s cancer appropriately, and if anything was missed. The colorectal cancer guidance is relevant here. It provides guidance on follow up treatment of primary bowel cancer, typically by surgery.
29. In 2015, Mrs D was being treated for rectal cancer and underwent radiotherapy and chemotherapy in November 2015. A CT scan was arranged six weeks after this treatment, in January 2016. This CT scan incidentally identified Mrs D had a 2mm lung nodule present. A nodule can be a sign of early cancer and its size, appearance and growth rate can be monitored to determine if it is cancerous.
30. Mrs D then underwent surgery on 17 March 2016 to remove low rectal cancers. Her post-surgery histology (analysis of the tissue removed during surgery) showed a complete resolution of the tumour, meaning there was no rectal cancer detectable.
31. The colorectal guidance sets out that if a patient has had a resection as Mrs D did, at least one full body CT scan should be carried out per year after this, to monitor the previous existing cancer.
32. We can see the Trust carried out a CT scan in line with this, on 31 March 2016. After also identifying the lung nodule, the Trust carried out a number of CT scans in 2016 to monitor its growth. The nodule was progressively increasing in size and the Trust’s impression in 2016 was that this was likely a metastatic deposit, with no recurrence in the pelvis. A metastatic deposit is a secondary tumour, caused by cancer cells that spread from a primary cancer site to other parts of the body.
33. On 13 May 2016, it was discussed with Mrs D and her daughter that the lung nodule had increased in size from the scan in March 2016. The records show the doctor discussed the option of chemotherapy with Mrs D, but she was not keen to pursue this. It was therefore agreed a follow up appointment would take place in August to review the next CT scan planned for July 2016.
34. On 19 August 2016, Mrs D was seen in clinic as planned following the repeat CT scan. The scan showed a 4.8mm nodule, increased from 2mm in January 2016 and 3.5mm in April 2016. This was a 1mm increase from the last scan, supporting the Trust’s view it felt it was likely this was a metastatic deposit.
35. The records show Mrs D was advised of the scan results, and that this was likely a metastatic deposit. Mrs D was still not keen to consider chemotherapy at that time. This was her choice and she opted for surveillance. It is noted Mrs D had previously had some poor tolerance to chemotherapy and we acknowledge her views around this at the time. As a result, and based on Mrs D’s wishes, a plan was made to arrange a further scan in October 2016, with a clinic review.
36. Mrs D had a CT scan on 17 October 2016 and was seen in clinic to review this on 18 November 2016. She was noted to be recovering from bowel surgery and had been unwell following a urine infection. Her lung nodule was noted to be stable on the CT scan, meaning it had not grown. As a result, Mrs D opted again for surveillance with a repeat scan and follow up in February 2017.
37. The nodule then stabilised in size and as a result of the above factors and Mrs D’s wishes, Mrs D was placed on a CT surveillance list and monitored in line with this.
38. A follow up scan took place in line with the above plan in November 2017, and the nodule was noted to be stable. There had been no significant change in appearance from August 2017. A plan was made for Mrs D to have surveillance. The reporting radiologist suggested Mrs D have a follow up scan in four months’ time.
39. A CT scan took place on 12 April 2018, and the nodule was noted to have increased in size. An MDT discussion was recommended at this point. This took place on 18 April 2018, and it was suggested that a CT scan of the thorax, abdomen and pelvis (CT CAP) take place, followed by a PET-CT to characterise the increase in size. These are scans which are crucial for diagnosing and staging cancers.
40. This was recommended by the MDT but does not appear to have taken place until December 2018. THE PET-CT took place in July 2019.
41. This appears to be a long gap between the nodule noted to be growing in April 2018, and the recommended imaging in December 2018.
42. Our radiology and oncology advisers have carefully considered this, to determine if something may have gone wrong here. After careful consideration, the delays are explained by patient choice and were agreed with Mrs D in line with GMC guidance.
43. The CT CAP was suggested and Mrs D agreed for this to take place. The discussion concluded as an outpatient appointment was already arranged for 17 September 2018, it would be arranged from this clinic. The clinic took place as planned, and the scan was subsequently arranged for 5 December. It was noted again at this stage that Mrs D had declined any chemotherapy.
44. Our oncology adviser explains there were detailed discussions with Mrs D on a number of occasions regarding management and intervention around the metastatic lung deposit from 2016 onwards and this was regularly revisited. There is clear evidence from the appointments that Mrs D wanted to wait, and this was her choice.
45. It was reiterated in the clinic letters in December 2018 that Mrs D had already declined any further chemotherapy. The oncologist noted they had a long discussion with Mrs D explaining the nodule was increasing in size and Mrs D was aware this could be either a primary cancer or metastasis.
46. The oncologist explained the lesion was getting bigger, and she could benefit from some treatment. Mrs D’s views were that she was asymptomatic and was not keen for chemotherapy. The clinic letter explains Mrs D was not keen on further intervention and opted to delay the PET-CT. She agreed to a follow up scan in six months’ time.
47. Mrs D had capacity, and it was her choice to decline treatment at that time. Based on the above, although there initially appeared to be delays in arranging scans and treatment, on balance, these were planned intervals communicated and agreed with Mrs D based on her wishes. Our oncology adviser explains these conversations are clearly driven by patient choice, and this is in line with GMC guidance.
48. The PET-CT scan was subsequently arranged for July 2019 within the six month window agreed with Mrs D. A second separate abnormality was seen on this scan in her ascending colon by the radiologist. There were no follow up recommendations from the radiologist about this.
49. Our radiology adviser explains it is possible at that time the radiologist did not consider this to be a cause for concern. This is because the PET scan uses a radioactive drug, called a tracer, to show typical and atypical activity. Uptake of this tracer in the colon is common, and this is not always due to a pathology such as cancer. This more often reflects polyps or diverticulitis, which is inflammation in the colon.
50. For a lesion of this size, a benign pathology was much more likely, suggesting at that time the second abnormality was likely non-cancerous. Our radiology adviser explains based on this, urgent further investigation was not thought to be warranted in July 2019, and this was appropriate. Deciding when an area of uptake requires further investigation is down to the radiologist’s clinical judgement and experience.
51. Our radiology adviser says that it is unlikely to have changed the clinical course, as Mrs D subsequently had a second PET scan three months alter which confirmed the second colon abnormality was still present and therefore needed further investigations, which were done urgently. These investigations confirmed Mrs D had a tumour in her colon, separate from the original tumour and not due to the previous rectal cancer.
52. Our oncology adviser also explains in the clinical context, if it had been picked up in July it would not have altered Mrs D’s management. This is because Mrs D had a second PET CT three months later indicating the need for further investigation.
53. In February 2020, Mrs D then had colon cancer surgery. This is called resection and is a surgical procedure where parts of the colon are removed, along with a margin of healthy tissue. The outcome of the surgery was that she had good resection margins. This meant there was no tumour at the edges of the tissue removed. It was identified post-surgery Mrs D had lymph node and peritoneal (abdominal wall) metastases. This means cancer had spread from the primary tumour.
54. As a result, the Trust offered Mrs D the option to undertake chemotherapy in March 2020. At that time, Mrs D declined and opted for surveillance. The Trust carried out this surveillance with a CT scan in July 2020 and October 2020.
55. At these reviews therapeutic options were discussed, including surgery and radiotherapy and Mrs D felt surveillance was the best option for her. Within 2020, Mrs D had been seen every six to eight weeks in the oncology clinic, with repeated imaging and discussion of options.
56. We recognise Mrs B has concerns the Trust missed her mother’s cancer. Careful consideration of the evidence shows this was closely monitored and investigated in line with the colorectal guidance. Mrs D had a long history of known metastatic disease and declined intervention due to not feeling well enough.
57. Our oncology and radiology advisers confirm in terms of surveillance of cancer, the Trust acted in line with guidance doing at least one full body CT per year after resection, and other follow ups for incidental findings.
58. We understand there was a period of time where Mrs D’s lung nodules were being monitored, and it is understandable Mrs B questions if action could have been taken sooner. It is important to recognise Mrs D did not want to undergo chemotherapy at that time. We hope this information has been helpful to explain the clinical context at the time.
A practice in the Thanet area 59. Mrs B has concerns the Practice refused to help or treat her mother when she was deteriorating, specifically around August and September 2020. She says her mother eventually ended up in hospital and her cancer had spread.
60. The Practice says Mrs D started to decline around Christmas, and rapidly deteriorated two weeks before she was admitted to hospital.
61. The GMC guidance is relevant here. It explains when assessing, diagnosing or treating a patient clinicians must promptly provide or arrange suitable advice, investigations or treatments where necessary, or refer the patient to another practitioner where it suits the patients needs.
62. It is important to note Covid-19 rules and guidance were also in place at this time. This guidance meant access to general practice was by remote triage, and it was for clinicians to determine the most appropriate consultation with the patient, limiting home visits.
63. The first home visit was requested for Mrs D on 8 September 2020, and she was noted to be shouting out in pain. The initial impression was that Mrs D’s pressure sores were the cause of her pain. As a result, the GP arranged for Mrs D to be referred to the district nurse team urgently, and for the district nurse to attend in person. The GP also put safety netting in place, noting they would review Mrs D if she had any worsening symptoms or increased pain. This was prompt and suitable advice, with a face-to-face review in place, and in line with GMC guidance.
64. The next contact with the GP was on 18 September, and Mrs D’s family requested a home visit as she was experiencing vomiting and backpain. The GP therefore arranged for a home visit to take place. This was by a paramedic service, which was common practice at the time due to Covid-19 restrictions in place. Mrs D was reviewed in person, with a thorough record shared by the paramedic to the Practice. It shows Mrs D explained she did not want to go into hospital. As a result, a plan was made for a district nurse to attend to review her pressure sores and pain. The GP prescribed anti-sickness tablets, pain relief and X-rays, with safety netting advice to telephone 999 if she became more unwell. This was appropriate in line with the above GMC guidance.
65. There was then no direct request for support for a short period to the Practice. The Practice was contacted by the hospital in October 2020 to say Mrs D was feeling well at that time. The review explained Mrs D knew her cancer was palliative and was going to progress at some point, but things appeared to be stable at this stage. Mrs D continued to be reviewed by the hospital team.
66. The district nurse team then contacted the Practice on 17 December to explain they were worried about Mrs D’s nutritional intake and that she had a lump. The Practice telephoned the family the following day and arranged a home visit for 21 December. The GP reviewed Mrs D and noted she had a CT of the abdomen arranged for cancer staging and was under the care of the hospital for this. The GP noted it would wait for the results of this but would review the lump further if it became larger or more painful.
67. The family next contacted the Practice on 7 January, requesting a home visit, as they felt Mrs D was not coping and spent most of her time in bed. The family noted she had colon cancer, was anxious about the stairs, had a low nutritional intake and worries as Mrs D did not want to engage with appointments. The Practice arranged for a home visit the following day. Mrs D was examined, and referred to the dietician, district nurses, intermediate care team and the single point of access (SPOA) service, for community care and support. Mrs D was appropriately referred for support in line with GMC guidance.
68. On 18 January, the family contacted the Practice to say they felt Mrs D was slowly declining. She was confused and her nutritional intake was declining. It was noted Mrs D was against a hospital admission. The GP decided Mrs D would need to be seen face to face. This took place the next day, Mrs D was examined and blood tests were taken. Due to the referrals made at the last appointment set out above, a care package was due to start. A further referral was made to the district nurse team. Mrs D was appropriately seen in person, with referrals made to other practitioners for further input and support and follow up care in place. This was in line with GMC guidance.
69. On 21 January, Mrs D experienced further confusion and paramedics attended. The paramedics advised she attend the emergency department, and she went into hospital at this point.
70. Our GP explains on each occasion, the Practice acted appropriately in arranging home visits and reviews, despite being in the context of the pandemic when home visits were restricted.
71. Mrs D initially appeared to be stable, with the oncologist reporting she was well and the CT scan not showing progression. Very sadly, her condition appears to have accelerated quickly around January. We recognise Mrs D was unwell, and how difficult it must have been for her family to have experienced this. The evidence supports the Practice acted on Mrs D’s reviews, and in light of her wishes not to go to hospital, these referrals were prompt and appropriate for care in the community, in line with GMC guidance. We hope this explanation is helpful around the steps that were taken at the time.
East Kent Hospitals University NHS Foundation Trust 72. We are mindful Mrs D had deteriorated and went into hospital on 21 January 2021. Mrs B has concerns the Trust caused a delay in determining what was wrong with her mother when she was admitted. She explains they thought she only went in with dehydration and a water infection.
73. Our physician adviser has very carefully considered this. On the first day of Mrs D’s admission, it was recognised and known she had metastatic cancer. The oncology team were involved from the beginning of the admission and acknowledged there was a potential there had been a progression of her cancer. Mrs D was also treated for dehydration and infection with fluids and antibiotics.
74. The suspected cancer guidance was therefore applicable here. Our physician adviser explains this generally applies to outpatient investigation, and recommendations are for investigations to be performed within two weeks. Our adviser explains there is not a set time scale on how quickly a CT scan should be arranged to consider this in the circumstances as an inpatient, therefore this timeframe is appropriate in the circumstances.
75. The CT scan took place in line with this on 31 January 2021. Whilst Mrs D was waiting for the scan results, she was receiving full active treatment in between. The Trust knew the situation, was aware of her cancer, and was waiting for the definitive scan results.
76. We acknowledge Mrs B has concerns the Trust caused a delay in diagnosis, but after careful consideration of the evidence there is no indication Mrs D’s diagnosis was missed, the Trust did not appreciate the severity of the situation, or of any delays. The scan was for diagnostic purposes and not treatment.
77. Mrs D received the appropriate treatment, the only treatment that could be given in the clinical circumstances was nutrition, hydration and treating of infection with antibiotics which we can see took place. As soon as Mrs D’s scan results were received on 31 January 2021, she was promptly referred to the palliative care team.
78. We acknowledge Mrs B has explained she was not aware of the situation at the time. When Mrs D was admitted on 21 January, the records explain a history was taken from Mrs B. As part of the background to the admission, it appeared to be understood and accepted by all parties that Mrs D had cancer and the prognosis. After this, the next update was on 28 January 2021. We recognise ten days is a timeframe a patient or their family may expect to receive an update.
79. GMC guidance says you must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.
80. The clinical situation above is that the Trust took a history from Mrs B on admission and appeared to feel Mrs B had an understanding of the situation. After the admission, the Trust needed to wait until the scan before it could confirm if the cancer had spread or not.
81. We must acknowledge this was also within the peak of the Covid-19 pandemic and was the first winter following restrictions. We recognise this was a really difficult time. From a family’s perspective we can understand how difficult it must have been not to have been able to see their family members, and this may have contributed to feeling like they were not knowing what was happening. We also recognise this was incredibly tough for Trusts, and they may not have been able to update families as much as they’d have liked due to the severity of the situation at that time and clinical pressures.
82. After the CT scan took place, there are regular entries between medical professionals with the family explaining the results, clinical picture and next steps. There was then a focus on thinking about discharge planning and managing symptoms.
83. On balance, it appears the Trust was waiting for the test results to confirm to the family whether the cancer had spread, and it was reasonable to do so in line with the above guidance.
84. We understand Mrs B also has concerns about the discharge planning process. She says they were offered a space at a hospice, then told Mrs D was not ill enough. She questions why occupational health were making arrangements for Mrs D to go home, and she died shortly after discharge.
85. The Trust says during her admission Mrs D was referred to the palliative care team on 1 February 2021. The progression of her cancer was noted, possible heart attack and plans for discharge home. On 3 February 2021 it was discussed if hospice transfer was appropriate. At the time she was awake, eating, talking and it was felt she was in a stable condition. The Trust says hospice admission is usually only available for those felt to be dying within days to a week for complex symptom control. At the time on 3 February, it did not feel Mrs D had reached this stage, so a longer-term option of a nursing home was recommended.
86. The Trust says it is sorry the anticipated progress was wrong. It says it can be very difficult to accurately predict how long someone has to live and it is sorry she deteriorated and died so soon after transfer. The palliative care team did not anticipate this. It says it is sorry Mrs B did not feel prepared for her mother’s death.
87. The last days of life guidance is applicable here. The guidance says the patient and their family should be provided with accurate information about their prognosis, any uncertainty and how this will be managed. It notes that recognising a patient is dying can be very challenging for health professions. This is because there is often an uncertainty about how long a person may have to live, and the signs to suggest this are complex and subtle.
88. As explained above, the CT scan results confirming prognosis were available on 31 January 2021. It was confirmed and communicated at this stage that Mrs D’s cancer had spread and she was referred to the palliative care team. The focus therefore moved to discharge planning and symptom control, to keep Mrs D comfortable.
89. The records show on 2 February 2021 there was a discussion with Mrs B and the doctor about hospice care. We recognise the family had a preference for this option at the time. The following day, the palliative care team advised it was more appropriate for Mrs D to go to a nursing home.
90. Our physician adviser explains a hospice placement is usually appropriate when a patient needs specialist input for symptoms that are complex or difficult to control. Hospice care, or palliative care, does not only take place within a hospice itself but can also be provided at home or in a care home. The clinical picture at that time supported that Mrs D needed 24 hour nursing care but did not require specialist or complex palliative care. The discharge arrangements to look to get Mrs D to a nursing home were therefore appropriate.
91. We acknowledge Mrs B’s concerns that her mother very sadly went on to die quickly after discharge to a nursing home. It is understandable she has had concerns about if this was the right decision, given what went on to happen.
92. Our physician adviser acknowledges this and recognises with the benefit of hindsight, a Trust would not want to discharge someone if they thought they would die so imminently. As set out in the guidance above, it can be incredibly difficult to recognise when someone is dying. On 8 February before discharge, Mrs D had been seen by the medical team and was clinically fit to discharged. She was still noted to be eating and drinking and was not anticipated to be actively dying and the Trust’s assessment was that it didn’t think she was in the last days of life.
93. We know that very sadly Mrs D did go on to die very soon after discharge. Taking the above guidance into account, it can be very difficult to know how long a person has left to live and this is very complex. We do not think this means the Trust missed something but can understand and are incredibly mindful of the concerns around this.
94. We are reassured to see the Trust has recognised what went on to happen and has apologised its anticipated prognosis did prove to be wrong.
95. It is clear this was an extremely difficult time for Mrs B and her family, and we do not underestimate this. This was in the context of the pandemic which is likely to have exacerbated the difficulty. We hope our explanations around what happened at each stage and why have been helpful and give Mrs B further information to explain why the support in place was in in line with guidance.