University Hospitals of North Midlands NHS Trust

6. Ms C complains about aspects of care and treatment her father, Mr C, received from the Trust from 25 May to 13 August 2024. In particular, she says because her father was too unwell to have a diagnosis by biopsy, he remained under a suspected cancer categorisation despite clinical certainty of advanced metastatic cancer.

7. She also says there were delays in providing her father with palliative care, inadequate pain management and he was not placed on appropriate wards for his condition. Ms C says the Trust provided an overly exaggerated prognosis and was unclear regarding his discharge planning.

8. She says because of the cancer categorisation her father did not receive the correct cancer care standards. Ms C says her father was left to suffer and had no dignity in the last few weeks of his life. She says this compounded grief for the family, causing a great deal of distress and upset.

9. As an outcome she would like the Trust to learn from its errors and for service improvements.

10. On 25 May 2024, Mr C was admitted to A&E due to him experiencing abdominal pain for a few weeks and with weight loss. The Trust carried out a CT abdomen and pelvis scan.

11. The following day, the Trust transferred Mr C to the Surgical Assessment Unit (SAU) and he was admitted to ward 107. It soon became clear Mr C sadly had stage four metastatic lung cancer spreading to the liver and both kidneys.

12. On 28 May 2024, the Trust appears to have made a referral to the specialist palliative care services prior to Mr C being discharged. The primary reason for the referral appears to be to manage Mr C’s pain. The following day the Trust discharged Mr C, and a referral was made to the community palliative care team and the Multi-Disciplinary Team (MDT).

13. On 4 June 2024, the Trust carried out an ultrasound. The Trust discussed these results at an MDT meeting on 10 June 2024, with a further plan to organise a left lung biopsy under a CT scan.

14. On 11 June 2024, the Trust arranged an MRI scan of Mr Cs spine.

15. Two days later, Mr C attended the Trust to have his MRI scan; however, the Trust was unable to proceed due to the morphine pump being in situ – no scan was performed.

16. On 17 June 2024, the Trust carried out an MRI scan which indicated bone changes in keeping with cancer deposits (when cancer spreads to the bones).

17. On 29 June 2024, Mr C was again admitted to hospital while still awaiting a definitive diagnosis based on histopathology (the microscopic examination of tissue biopsies or surgical samples to study, diagnose, and monitor diseases).

18. On 9 July 2024, Mr C attended A&E again and was assessed by the Trust for pneumonia. The Trust discharged him the same day.

19. Two weeks later, Mr C attended A&E once again with breathing difficulties (lower respiratory tract infection suspected) and the Trust admitted him to an acute medical unit (AMU) for treatment. On 25 July 2024, Mr C was admitted to ward 12 at the Trust.

20. On 5 August 2024, the Trust referred Mr C to the oncology department.

21. On 9 August 2024, the Trust cancelled a CT biopsy as it deemed Mr C too poorly to attend.

22. Sadly, Mr C passed away on 13 August 2024.

Management of Mr C’s cancer care

26. Ms C accepts her father was too poorly to have diagnostic tests. However, she feels the Trust should have treated her father as a cancer patient from the point advanced metastatic disease was identified on imaging (26th May 2024), rather than ‘hide behind "suspected cancer semantics to justify substandard care pathways’.

27. She has told us her concern is not just that he received substandard care, but that the 'suspected' categorisation was used administratively to avoid triggering cancer care standards. despite clinical certainty of advanced metastatic disease and active treatment of his cancer.

28. The Trust explained Mr C’s pathway was sadly complicated and the team were unable to complete the diagnostic to provide a definitive diagnosis to ascertain the correct treatment he would require.

29. We discussed this with our oncologist to determine whether the Trust acted appropriately when managing Mr C’s care.

30. The cancer diagnostic pathway (a clinical journey tracking a patient from initial suspicion to diagnosis and treatment) helps guide what sort of investigations should be carried out.

31. Following Mr C attendance at A&E on 25 May 2024 the Trust carried out a CT scan which showed renal masses and liver/bone nodules (abnormal growths or masses found in these respective tissues during imaging tests). It appears from the evidence, the Trust informed Mr C it suspected he had cancer and referred him to the urology department for further testing.

32. Our oncologist explained the CT scan indicated metastatic lung cancer (advanced cancer (typically Stage 4) that had spread from the lungs to other body parts). The clinical records show this, and the poor prognosis was explained to Mr C at the time. The Trust managed Mr C’s pain relief and prepared him for discharge including referring him to the palliative team within the community.

33. The Trust then referred the matter to a lung MDT to determine further management.

34. The MDT took place on 31 May 2024, and the Trust took at biopsy sample a few days later.

35. Our oncologist told us given Mr C had widespread metastatic disease there was unfortunately, not a suitable treatment appropriate to treat him or optimise his chances of survival. A biopsy is taken to confirm diagnosis and to identify possible markers which may highlight areas for therapy.

36. On 4 June 2024, the respiratory outpatient team saw Mr C, and it is documented ‘You are aware that we are investigating you for possible lung cancer with multiple metastasis’

37. The Trust took liquid DNA (a minimally invasive blood test that detects cancer by analysing small fragments of DNA released by tumour cells into the bloodstream) from Mr C on 18 July 2024, when biopsy attempts were unsuccessful.

38. Our oncologist explained this approach has only been authorised by the National Institute for Health and Care Excellence recently as a method of speeding up the diagnosis of patients with advanced lung cancer to avoid delays in processing biopsies and can often yield the correct targets for treatment.

39. It is worth noting that in July 2024 this was not a standard investigation process in the lung cancer pathway and our oncologist said this would suggest the Trust went above the standard of care that would have been expected at the time, regarding identifying a potential diagnosis and treatment.

40. Furthermore, we can see the Trust sought oncology advice and palliative radiotherapy also administered for metastatic spinal-cord compression. This was in line with NICE guidance on Spinal metastases and metastatic spinal cord compression.

41. Although Mr C did not have a proven histological diagnosis, the Trust managed his symptoms in line with NICE, lung cancer; diagnosis and management. This states, clinicians should carry out CT scans, refer to the multidisciplinary meeting team for discussions, as well as palliative care involvement.

42. Our oncologist went on to say that there is nothing to suggest it was the Trust’s fault that a definitive diagnosis was not given. A histological diagnosis will confirm the likely diagnosis of metastatic lung cancer in 95% of cases. However, when the cancer is advanced an incurable the predominant goal of a histological diagnosis is to guide treatment choices. In particular, the possibility of some cases responding very well to targeted treatment.

43. In Mr C’s case, his cancer was very advanced and incurable. He was extremely frail and our oncologist said no anti-cancer treatment to alter the course of the disease was possible.

44. There was no specific guidance regarding undertaking aggressive oncological therapies but ultimately, it is the objective of clinicians to find patients who are suitable for curative treatments promptly to optimise their chance of recovery. However, sadly our this was not possible in Mr C’s case.

45. Regardless of the fact the Trust did not have a definitive diagnosis for Mr C, we found his care was not negatively impacted, as the Trust acted in line with the relevant guidelines. Furthermore, our oncologist clarified there was no other pathway available for Mr C.

46. As such, even though there was a lack of a histological diagnosis, we are satisfied Mr C was managed according and in line with NICE guidance as a case of metastatic lung cancer. However, this does not take away from the pain and suffering Mr C experienced during this time and the lasting distress this has had on his family.

Delays in palliative care

47. Ms C has also told us there were delays in referring her father for palliative care.

48. She has explained she does not believe her father should have had to go through A&E every time something new went wrong.

49. The Trust has explained that its palliative care team saw Mr C during his hospital admission on 22 July and throughout his admission in August. It said Mr C’s disease progressed rapidly and from his first scan in May, he survived less than three months.

50. The Trust also explained it referred Mr C to the palliative care team on each of his hospital admissions.

51. As mentioned earlier in the report, the Trust referred Mr C to palliative care on 28 May 2024. In the discharge letter (dated 29 May 2024) it started; ‘referred to palliative care team in the community, urgent follow up’.

52. Prior to the Trust discharging Mr C on 28 May 2024 the specialist palliative care team spoke with the ward doctor. The ward doctor informed the palliative team that Mr C had declined to take modified release morphine (a painkiller for severe pain) and wished to remain on codeine but felt he was medically ready for discharge.

53. The evidence suggests the palliative care team were happy for Mr C to go home and be managed within the community.

54. The decision to discharge Mr C with further community ongoing palliative care was in line with NICE guidance which suggests supportive and palliative care of an individual should be provided by general and specialist palliative care providers and referrals should be made without delay.

55. It is worth noting that we can see there are several palliative care entries within Mr C’s clinical records, including throughout his inpatient hospital admissions and in July and August 2024.

56. In respect to Mr C having to attend A&E on each occasion he became unwell, our oncologist explained unfortunately, it appears there was no other pathway available.

57. We fully appreciate why Ms C is upset about her father having to go through the distress of attending A&E multiple times and understand this would have compiled the distress he experienced at an already difficult time. As mentioned above, we have seen no evidence to suggest another pathway was available though and do not identify any failings.

Accuracy of prognosis

58. Ms C says the Trust gave her father an incorrect/inaccurate prognosis.

59. She says the Trust informed her father he had three to six months to live but he died seven days after this prognosis was given. She believes this was a grossly irresponsible estimate of the time her father had before he died.

60. In its response the Trust explained that a prognosis is notoriously difficult to predict and information can frequently change.

61. The evidence suggests Mr C had a discussion on 6 August 2024 with the consultant oncologist, in which the oncologist gave Mr C a life expectancy of less than three months.

62. It is extremely difficult to be precise about a prognosis, and we recognise that Mr C deteriorated rapidly at the end of his life. There are several variables that a clinician needs to consider that may affect their prognosis, but this still does not guarantee any certainties.

63. GMC, good medical practice guidance paragraph 28, states;

‘The exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about:

• their condition(s), likely progression, and any uncertainties about diagnosis and prognosis’.

64. We were sorry to see that Mr C deteriorated much sooner than the initial prognosis given by the Trust and understand this meant both he and his family had less time to come to terms and prepare for his death. We cannot say this was because of failings by the Trust or that the prognosis was incorrect at the time it was given. There is no doubt however, this caused additional upset and distress for the family.

Pain relief

65. Ms C has said the Trust failed to administer adequate pain relief to her father and he was often left suffering in pain.

66. The clinical records show Mr C’s pain scores were consistently high throughout his hospital admissions between May and August 2024.

67. The clinical records indicate the Trust appropriately assessed and recorded Mr C’s pain daily using pain scores out of ten and our nursing adviser has confirmed appropriate analgesia was prescribed but often declined by Mr C.

68. We can see nursing staff requested specialist input from the palliative care team to assess and manage Mr C’s care and pain. It also appears Mr C was declining the offer of morphine and other pain relief, making it extremely difficult for the Trust to manage his pain.

69. An example of this was on 12 July 2024 where the records state; ‘‘plan to increase oxycodone but Mr C not agreeable. He only wants to take four milligrams oxycodone liquid. Explored with him further but he feels four milligrams is top of what he wants to take’.

70. On 21 July 2024 Mr C was seen by a palliative care nurse. He was experiencing pain in his right arm but did not wish to take oxycodone (a potent semi-synthetic opioid prescribed to manage severe, ongoing moderate-to-severe pain) but agreed to increase gabapentin (used to treat epilepsy (by controlling seizures) and neuropathic nerve pain).

71. Furthermore, on 5 August 2024, Mr C was sadly screaming out in pain but refused pain relief when it was offered to him.

72. NICE guidance, patient experience in adult NHS services: improving the experience of care for people using adult NHS services states;

If a patient is unable to manage their own pain relief: • do not assume that pain relief is adequate, • ask them regularly about pain, • assess pain using a pain scale, if necessary (for example, on a scale of 1 to 10), • provide pain relief and adjust as needed.

73. Our oncologist explained the Trust were trying to administer the correct doses of pain relief to help manage his pain.

74. It appears at this stage the Trust were trying to negotiate with the Mr C to get him to take the medication and explain how this would impact him. It is also clear that Mr C has capacity to make decisions about his own care but was reluctant to take it due to the risk of side effects.

75. GMC, Good medical practice paragraph 24 states; ‘all patients have the right to be involved in decisions about their treatment and care and be supported to make informed decisions if they can. You must start from the presumption that all adult patients have capacity to make decisions about their treatment and care’.

76. Although Mr C was experiencing high levels of pain and distress, we are satisfied the Trust followed the appropriate guidance when taking steps to try and manage this pain with the correct medication.

77. We appreciate this would have been extremely distressing for his family to witness.

Incorrect ward admission and pressure sores

78. Ms C has said the ward her father was on was inappropriate for his condition and needs.

79. She told us the ward her father was on was not equipped to care for him. She says he got bed sores and was left crying out in pain/tiredness.

80. In the Trust’s response it explained it did not have a ward specifically to care for palliative patients.

81. Based on the evidence, we can see the Trust placed Mr C on ward 12, which according to the records is a general medical ward.

82. Our nurse explained general medical wards within the NHS provide, acute and non-surgical care (for a wide range of medical conditions, including palliative care for patients).

83. We can see Mr C was referred to the medical team from A&E (on 9 July 2024) as he was acutely unwell with his palliative illness, requiring interventions to assist with his condition.

84. Our nurse explained most NHS Trusts do not have specific palliative wards for patients and tend to have palliative care teams that assist in managing patients like Mr C on all wards.

85. It is worth noting that the Trust has also said during Mr C’s time on the ward the clinical area was ‘short’ of a nursing assistant. Despite asking for support, this was not covered, so the Trust has said the ward had to manage as best as it could. The Trust has said since the incidents a review of staffing took place and the situation has improved.

86. Furthermore, the Trust has told us ward 12 does have 10 beds designated for palliative care patients. Patients in these beds are overseen by a palliative medicine consultant directly (rather than the palliative care team providing advice to the ward teams which is the role of hospital palliative care teams more commonly).

87. Although we appreciate and understand the concerns Ms C has raised, especially given Mr C’s specific needs and the distress he was clearly in, we are satisfied, that an ward 12 was the appropriate place for Mr C. This is because, it appears he was receiving medical/nursing care, alongside being regularly reviewed and managed by the palliative care team and respiratory team.

88. We then looked at Ms C concerns that her father suffering from bed sores whilst under the care of the Trust.

89. The records show the Trust was repositioning Mr C three to four hourly and carried out a skin assessment to help establish whether he was at risk of sores.

90. NICE guidance, pressure ulcers: prevention and management state the key priorities are as follows;

• Risk assessment using validated tool, • Skin assessment, • Repositioning, • Pressure redistributing devices, and • Barrier creams.

91. The evidence suggests the Trust acted in line with the relevant guidance.

92. Mr C had a waterloo score (a widely used clinical risk assessment tool utilised by healthcare and care professionals in the UK to evaluate an individual's vulnerability to developing pressure ulcers) of 16, which indicated he was at high risk of developing bed sores.

93. However, our nurse explained even with Mr C being at high risk the Trust did not need to put him on a pressure relieving mattress, given staff were assessing him daily.

94. There is no clinical evidence that Mr C ever developed a bed sore. However, our nurse explained Mr C had a ‘moisture lesion’, which is what patients usually get from being incontinent.

95. It is important to note that a moisture lesion is different to a pressure sore, as it is superficial skin damage caused by prolonged exposure to moisture, such as urine, faeces, sweat, or wound fluid. A pressure sore usually develops after a moisture lesion if it is not treated correctly. Moisture lesions cannot be completely prevented but the action the Trust was taking was appropriate to reduce the risk of it developing into a pressure sore.

96. As the Trust carried out an appropriate risk assessment and repositioned Mr C and monitored him regularly, we are satisfied it has acted in line with the applicable guidance to prevent pressure sores from happening.

Discharge planning

97. Finally, Ms C has also told us her father was discharged even though appropriate care packages were not in place.

98. The Trust (Medical team) informed Mr C and his family that he was medically optimised for discharge on 25 July 2024. The evidence also suggests the Trust had been discussing this with the family in the weeks leading up to the discharge.

99. The clinical records show the therapy team assessed Mr C and it deemed him fit for discharge with a package of care on 22 July 2024. The Trust referred Mr C to the community team(s) and it is recorded he was keen to go home. The records state: ‘Mr C reports that he is well supported at home, will be happy to go home with package of care. He is very keen to go home today’.

100. The palliative care doctor reviewed Mr C prior to his discharge, and they felt he was fit to go home, once his take home medications were ready and package of care could be restarted.

101. Unfortunately, it seems the package of care/transfer of care could not be restarted on the day of discharge (25 July 2024). Mr C expressed his dissatisfaction at this and insisted on going home. The documented records show his family agreed to support Mr C until the package of care could be put in place.

102. Our nurse explained there was no indication that Mr C did not have mental capacity to make his own decisions. As such, the Trust would not have been able to keep him in hospital against his wishes.

103. We are satisfied the discharge was appropriate and in line with DoHSC guidance on discharge, where it states, ‘patients should be discharged to the best place for them to continue recovery (if needed) in a safe, appropriate and timely way’.

104. Based on the evidence available, the advice, and the guidelines, we are satisfied that the discharge on 25 July 2024 appeared to be appropriate.

105. In conclusion we understand and deeply empathise with Ms C’s concerns in bringing this complaint to us, particularly given the severity of her father’s condition and subsequent tragic death. However, although, we acknowledge Mr C was extremely unwell and suffered pain in the last few months of his life, we have found the Trust acted in line with the relevant guidelines and therefore do not uphold the complaint.

1. We have carefully considered Ms C’s complaint. We are sorry to hear of the tragic death of her father, Mr C and the circumstances leading up to his death. We also appreciate the reasons why Ms C brought her complaint about the Trust to our office.

2. We found the care provided by the Trust was appropriate and in line with the guidance. This includes the referral/intervention of palliative care in a timely manner

3. We are also satisfied the Trust administered appropriate pain relief during Mr C’s time as an inpatient, but we recognise the Trust had issues managing his pain.

4. Furthermore, the evidence shows the Trust’s discharge of Mr C was appropriate and in line with guidance. We are also satisfied the prognosis given to Mr C just before his death was reasonable, even though he did rapidly deterioration towards the end of his life.

5. Based on the evidence we have seen, we do not uphold Ms C’s complaint. We know how deeply Ms C has been affected by these events and the events surrounding her father’s tragic death. We hope our report fully explains the reasons for our decision and provides her with some closure.