Oncology treatment
23. Mrs T believes there were unnecessary delays in her husband’s cancer diagnosis and treatment. She says these issues meant her husband experienced pain and anxiety that could have been avoided. She says NHS guidelines state a patient should not wait for more than 31 days for treatment after a cancer diagnosis. She says her husband saw an oncologist 56 days after his initial diagnosis.
24. Our understanding is the Morecambe Bay Trust was responsible for overseeing decisions about Dr T’s cancer care and treatment.
25. There are no oncology guidelines regarding people who have the specific range of health issues Dr T had. Good Medical Practice says doctors must provide a good standard of care. This includes carrying out adequate assessments of the patient’s conditions and their history. They must promptly provide, or arrange, suitable advice, investigations, or treatment where necessary. They should refer patients to another practitioner when this serves the patient’s needs.
26. The Oncology Adviser told us Dr T had experienced several complications relating to diabetes. Diabetes can affect the small nerve endings, especially in the feet (known as diabetic peripheral neuropathy) and the autonomic nervous system. The autonomic nervous system controls functions such as heart rate, blood pressure, and the movement of food through the digestive system. Dr T’s autonomic nervous system was impaired because of his diabetes. This affected his blood pressure and the muscles in his bowels, leading to symptoms mimicking pyloric stenosis (the narrowing of the opening from the stomach into the bowels).
27. Diabetes can also cause problems with the ‘furring up’ of arteries resulting in heart disease and lack of blood supply to several organs. Doctors identified this process of calcification of blood vessels on some of the scans Dr T had.
28. The Oncology Adviser also told us how, when a patient has an organ transplant this can cause problems with their immune system. The body recognises the transplanted organ as a foreign body and attacks it. This is called rejection. To reduce the chances of this happening the patient must take medication to suppress the immune system. Dr T was taking this medication and the renal team at Hospital A was monitoring this.
29. The immune system is also the body’s defence against the development of cancer, by recognising and destroying abnormal cells. People taking immunosuppressants are at high risk of developing cancer because their immune system cannot identify abnormal cells as it should.
30. There are many types of cancer, and the different types have different treatment options. Therefore, oncologists need a biopsy or tissue diagnosis. Sometimes blood tests can help by narrowing down the type of cancer someone might have. Dr T had raised CEA (Carcinoembryonic antigen) levels on 13 January 2020. This is a substance found on the surface of some cells and is usually present in very small quantities. It is most often present in people who have colorectal cancer but also in some other types of cancer.
31. The Oncology Adviser told us the treatment for cancer is either curative (getting rid of) the cancer or aimed at extending life and improving symptoms. For most solid cancers, if it has spread from where it has started, it is not possible to cure it. Sadly, this was the case for Dr T.
32. The choice of palliative treatment depends on the patient and the type of cancer. There are different types of chemotherapy medications that all have different side effects. Other treatments include immunotherapy, which stimulates the immune system to attack the cancer. This would not have been suitable for Dr T because he needed his immune system to be suppressed to keep his transplanted kidney working. There are biological or targeted therapies which are aimed at specific abnormalities. To see which approach to take a sample of the cancer must be taken and sent for analysis, known as a biopsy.
33. To be able to have a biopsy, the patient’s blood needs to be able to clot well or else there is a risk of fatal bleeding. The liver makes some of the proteins involved in blood clotting. When the liver is not working well this affects blood clotting. This happened in Dr T’s case, and it meant it was unsafe for him to have a biopsy.
34. The Oncology Adviser explained Dr T had a cancer of unknown primary site (CUP). The prognosis for patients with CUP is generally poor, even in people without Dr T’s health issues. However, doctors would usually investigate using blood tests, scans, and an endoscopy if appropriate. If a patient is fit enough doctors should also arrange a biopsy. Although tests were carried out for Dr T and narrowed the range of cancer types he could have had, his liver and kidney function were poor and he was not well enough to tolerate chemotherapy. This treatment could have worsened his quality of life or even shortened his life.
35. The Oncology Adviser said taking a biopsy from cancer in the liver or lung is unpleasant and can have serious complications. It is only recommended if the person is fit enough to receive treatment for whatever cancer is discovered. Knowing the type of cancer Dr T had would not have made any systemic treatment available to him.
36. Mrs T referred to a target of 31 days. This is a government target and is not a standard that doctors are expected to follow for every patient. It relates to 31 days to start treatment once a treatment plan has been agreed at a meeting with a doctor. In Dr T’s case there was no agreement to provide him with specific cancer treatment because the source and type of cancer could not be confirmed.
37. The clinical records show doctors carried out adequate assessments and then arranged appropriate investigations to try and diagnose the type of cancer Dr T had. They followed Good Medical Practice. Sadly, Dr T would never have been well enough to tolerate any of the treatments, even if the diagnosis had been made more quickly.
38. We find there was no delay in providing oncology treatment to Dr T. We recognise Mrs T does not agree with this view. We hope she is reassured we have carefully considered all the evidence in reaching this view and we are persuaded by the detailed clinical advice we have received. We do not uphold this part of the complaint.
Communication between doctors
39. Mrs T believes, if doctors at the two hospitals had worked together more closely, they might have been able to prolong her husband’s life. Instead, she says the last three months of her husband’s life were miserable.
40. Good Medical Practice says doctors must contribute to the safe transfer of patients between healthcare providers. There are no specific guidelines about which organisation should take the lead in these types of situations.
41. Dr T’s management involved multiple clinical teams, working in two separate trusts, across different sites. The records show information including laboratory results and scan images were shared between clinicians. Dr T’s health problems were complex, and this made co-ordination of care challenging.
42. The Renal Adviser said it is possible doctors could have organised Dr T’s treatment more effectively during January 2020. They said it was right to consider whether the decision by doctors to transfer him to Hospital A on 13 January was appropriate. Dr T clearly needed expert care relating to his kidney function and the team at Hospital B did not have this expertise. This decision disrupted and delayed the cancer investigations. It meant the decision relating to a biopsy was postponed.
43. We cannot say the communication between doctors at the two hospitals fell below any specific standard. While there are suggestions that care in this respect was not ideal, we must take account of the complexity of the situation. Dr T experienced a rapid deterioration in his kidney function. This presented significant challenges for his doctors.
44. The Renal Adviser considered the renal team at Hospital A effectively co-ordinated radiology, oncology, and palliative care, during Dr T’s final admission. The Oncology Adviser agreed with the Renal Adviser. They said communication between doctors at both hospitals about Dr T’s renal function were good.
45. We can clearly see how distressing the decline in Dr T’s health was for him and his wife. The Morecambe Bay Trust told Mrs T that communication between teams could have been better. But we cannot say this amounted a failing. We find the doctors at both trusts followed Good Medical Practice in terms of how they communicated with other clinicians. We do not uphold this issue.
Communication with Dr and Mrs T
46. Mrs T said the doctors knew, on 7 February 2020, there was no chance of her husband having successful treatment. She says the renal specialist at Hospital A refused to talk about what was happening with her husband’s cancer. She says they did not meet an oncologist to explain to them what was happening. She says it was only on 19 February that a doctor told them her husband was going to die.
47. Mrs T said:
‘If we had been told that treatment was not possible at an early stage, we would have had time to come to terms with the situation and spend some quiet and reflective time together at home. Instead, we spent the last three months of his life enduring endless admissions to either [Hospital A or Hospital B] without any clear guidance on the prognosis or the possibility of treatment.’
48. Good Medical Practice says doctors must give patients the information they want or need to know. They must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.
49. The End of Life Guideline says more about communication. It says those close to the patient may need to know about the patient’s diagnosis and the likely progression of the disease. This could help them provide care and recognise and respond to the patient’s condition. The End of Life Guideline says doctors must do their best to explain clinical issues in a way a person can understand, and approach difficult or potentially distressing issues about the patient’s prognosis and care with tact and sensitivity.
50. The clinical records from 20 December 2019 show investigations suggested Dr T had advanced and progressive cancer. Hospital discharge summaries referred to ‘masses’ but there is no evidence doctors attempted to explain what this implied to Dr or Mrs T. This was the first missed opportunity for doctors to provide a clear explanation to them. There is little evidence of communication between doctors and Dr and Mrs T over the following weeks.
51. The renal team at Hospital A were aware of the results of the scan from 24 January 2020. They could have discussed this with Dr and Mrs T during the admission, but they decided to wait until the case had been considered at the MDT at Hospital B. The Renal Adviser told us it is not straightforward to judge the appropriate time for discussing the implications of investigation results of this type. But the renal team at Hospital A were aware in early February that, because of his failing kidneys, Dr T’s position was very serious, and he was likely to die soon. There is no evidence they explained this to him or his wife.
52. On 5 February 2020 gastroenterologist 1 met with Dr and Mrs T. They confirmed the cancer diagnosis. They knew then Dr T was terminally ill. They sent a letter to Dr T’s GP following the meeting. Dr T received a copy of the letter. Gastroenterologist 1wrote ‘he is aware that meaningful systemic treatment for any malignant diagnosis would be highly problematic.’ There is no evidence gastroenterologist 1 explained what this meant in terms of Dr T’s prognosis, or that they specifically told him he was terminally ill.
53. Mrs T recalled she and her husband first met an oncologist on 19 February 2020, during Dr T’s final admission to Hospital A. The oncologist noted they had a fank discussion about Dr T’s prognosis and said it was very unlikely he would survive his illness.
54. The clinical records show clinicians shared more detailed information with Dr T and his wife after the oncology review. They correctly involved Mrs T in decision making when her husband was approaching the end of his life. But this only happened eight days before his death. Our view is this was too late.
55. The Morecambe Bay Trust agreed there had been a breakdown in communication between doctors and Dr and Mrs T about the prognosis. At the complaint meeting one of its doctors agreed it ‘was fair to say oncologists did not communicate the hopelessness of the situation as fully and openly as they should.’ The Morecambe Bay Trust said it ‘readily acknowledged the confusion and frustration that these delays and the clear lack of communication’ caused Dr and Mrs T.
56. Gastroenterologist 1 gave us their opinion:
‘The principal failure in this case was the late recognition that this man, with malignant disease, would never be a candidate either for surgery or chemotherapy. I feel this should be acknowledged as a failing on the part of the trust. There was clearly a lack of joined upness about the decision making. Clinicians thought and responded in silos… in summary I don’t think there was any deficiency in ‘treatment.’ But there were deficiencies in management.’
57. The Lancashire Trust considers the responsibility for discussing the outcome of MDT meetings and oncology reviews lay with the Morecambe Bay Trust. We do not agree with this view, as sufficient information was available to allow doctors at Hospital A to share the likely prognosis with Dr T and his wife while he was an inpatient there.
58. We find doctors from both Trusts failed to communicate effectively with Dr and Mrs T. They were not sensitive or responsive when they failed to share their views about Dr T’s poor prognosis. They did not follow Good Medical Practice or the End of Life Guideline.
59. We can see how failings in communication meant Mrs T and her husband were denied more time to come to terms with the fact he was dying. This led to avoidable distress and anxiety for them both. We can see this injustice continues to affect Mrs T. We uphold this aspect of the complaint about the Morecambe Bay Trust and the Lancashire Trust.
13 February 2020
60. Mrs T says she and her brother visited Dr T at Hospital A on 13 February 2020. They found a doctor and she agreed to arrange for medication. Despite this, staff only gave him pain relief nearly four hours later. Mrs T says the Lancashire Trust considers it was not unreasonable that her husband was left in pain for four hours. She questions why it was left to her to identify her husband’s pain when nurses should have been assessing him.
61. The NEWS Guideline explains how clinicians should identify and respond to changes in a patient’s physiological observations. It recommends they should use a scoring system which should lead to an escalation of care when needed. It says the clinical team should respond to and record the symptom of pain.
62. The Nursing Adviser told us assessing and managing pain are essential components of nursing practice. The Pain Framework makes it clear that nurses should act if a patient expresses pain. They should document it and either administer pain relief or contact a doctor if no pain relief has been prescribed. They should reassess pain to ensure it is controlled. The NMC Code says nurses must deliver treatment without undue delay and refer matters to colleagues when appropriate.
63. The clinical records show nurses observed Dr T was not in pain two hours earlier when they noted his observations. There was then a medical review within one hour and this did not make any reference to pain.
64. The records also show Dr T described leg pain and restlessness to the doctor. They considered this to be restless leg syndrome and explained this was not uncommon for patients with kidney failure. The doctor prescribed a rotigotine patch (medication used to ease the symptoms of restless leg syndrome) and paracetamol. Nursing records show the pharmacy did not have any patches available and had to order them. Meanwhile Dr T started intravenous paracetamol.
65. Nurses assessed the effectiveness of Dr T’s pain relief later on that day when they recorded he was not in pain.
66. The Lancashire Trust considered the doctor in question responded ‘promptly and appropriately’ to complaints from Mrs T that her husband was experiencing pain. Its view is the wait for pain relief ‘would not be considered an unreasonable amount of time.’
67. Nurses followed the NEWS Guideline, the Pain Framework and the NMC Code when they appropriately assessed Dr T’s pain on the morning of 13 February 2020. They also reassessed him that night. But we find the nurses did not follow the NMC Code when there was an undue delay in administering paracetamol.
68. The records support Mrs T’s complaint. It seems her husband was in pain and she asked a doctor to prescribe medication. The doctor did but there was a delay of three hours and thirty minutes before nurses gave paracetamol to Dr T.
69. Mrs T says her husband was left in unnecessary pain. Our view is, if nurses had given him paracetamol more quickly, it is likely his pain would have reduced. We can also see how this episode was distressing for Mrs T. We uphold this part of Mrs T’s complaint.
Palliative care
70. Mrs T says members of the palliative care team were initially supportive following her husband’s diagnosis. They offered regular care worker and district nursing visits. But the day before her husband’s discharge, a member of the team called her to say they could not provide any care at all. They said Mrs T would have to take responsibility for her husband’s medication. She says she was able to request support from the local hospice and nurses from there were able to assist her husband at the end of his life.
71. The Lancashire Trust explained how the level of support in Dr T’s area was different to what it usually arranged locally. It considers it contacted Mrs T to tell her the original plans had changed as soon as possible. It accepted there was a lack of support causing distress and upset.
72. The NICE Guideline says people managing and delivering services should develop systems to identify adults who are likely to be approaching the end of their life. It says there should be discussions about advance care planning and arrangements made with relevant health and social care practitioners.
73. The records show, once it was accepted Dr T was nearing the end of his life, staff at Hospital A engaged palliative care services. Practitioners at Hospital A coordinated with teams in Dr T’s local area to arrange care.
74. The Renal Adviser told us there is no evidence Dr T received less care or support than is typically available. Nurses from the local hospice visited him the day after he left hospital, which sadly proved to be the day before he died. Mrs T clearly experienced frustration that more care and support was not provided. There is no evidence the level of support was below what is usually provided for end-of-life patients. We find clinicians followed the NICE Guidelines in relation to planning for Dr T’s end of life care once he left hospital. We do not uphold this issue.
Complaint handling by the Lancashire Trust
75. Mrs T says she is generally satisfied with how the Morecambe Bay Trust handled her complaint. But she says the responses from the Lancashire Trust have been poor and it has not accepted its doctors did anything wrong.
76. Our Principles of Good Complaint Handling say public organisations should be ‘open and accountable,’ which includes giving clear, evidence-based explanations and reasons for their decisions.
77. Mrs T first complained to the Lancashire Trust in May 2020. She listed four key issues she wanted it to address. These were: oncology treatment, anti-rejection medication, communication, and the incident on 13 February 2020.
78. The Lancashire Trust first replied on 2 July 2020. While it responded to the four main issues in Mrs T’s complaint, it did not acknowledge the delay in providing pain relief for Dr T on 13 February 2020. It also did not accept there were failings in terms of communication.
79. Mrs T wrote to the Lancashire Trust again in August 2020. She was disappointed because some of the dates the Trust had referred to in its first reply were incorrect. She also said it had failed to address some of the specific points she made in her original complaint.
80. The Lancashire Trust sent its second and final reply to Mrs T on 11 December 2020. This correctly stated the team at Hospital B was responsible for leading Dr T’s oncology care and treatment. It responded to all the issues in the complaint. But, again, it failed to accept any responsibility for communication failings and did not consider the delays in pain relief on 13 February 2020 were significant.
81. In this report we have identified failings by staff at the Lancashire Trust in terms of communication and pain relief. The Lancashire Trust did not identify these failings or recognise the effect they had. In this respect the responses were not evidence-based. The Lancashire Trust was not ‘open and accountable.’ We can see how this would have been frustrating, and distressing, for Mrs T. We uphold this issue.