University Hospitals of Leicester NHS Trust

4. Mrs O complains about the care and treatment University Hospitals of Leicester NHS Trust (the Trust) provided to her mother, Mrs A, between October and December 2024. Mrs O specifically complains the Trust:

• did not start chemotherapy (cancer fighting medication) promptly following the diagnosis in October 2024 • failed to ensure appropriate collaboration between departments in relation to Mrs A’s care and treatment • did not manage appointments appropriately, taking into account Mrs A’s health, including arranging an appointment when the consultant was not present • did not update the family with regards to Mrs A’s care and treatment • provided a poor standard of end-of-life care.

5. Mrs O says the poor treatment the Trust provided to her mother, including the delayed chemotherapy and lack of palliative care, left her in unnecessary pain for the last months of her life.

6. She said the lack of updates from the Trust about her mother’s care her and her father poorly informed.

7. Mrs O said the poor care and treatment was distressing for her and her father to witness.

8. Mrs O would like an apology and systemic improvements to the Trust’s oncology service. The oncology service focuses on cancer prevention, treatment and support.

9. Towards the end of October 2024, the Trust admitted Mrs A to the hospital under the oncology service (the Service).

10. Mrs A spent three weeks in hospital across two weeks. The Service was initially unclear about the origin of her cancer.

11. The Service diagnosed stage four ovarian cancer which had spread to the liver and surrounding areas.

12. In early November 2024, the Trust discharged Mrs A home.

13. Towards the end of November 2024, the family met with the Service to discuss diagnosis, treatment and care.

14. It arranged an appointment for Mrs A to commence chemotherapy on 9 December 2024.

15. The family cancelled an appointment with the Service at the beginning of December 2024 due to Mrs A being unwell and exhausted.

16. The family cancelled a further appointment arranged for 9 December 2024 again due to Mrs A being so unwell.

17. The Service rearranged this appointment for three days later. Due to Mrs A’s deteriorating health and mobility, it was difficult to get her to the appointment. The consultant who was due to see Mrs A was not at work. The Service arranged an appointment for the following week.

18. Mid December 2024, Mrs A attended an appointment with the consultant via ambulance and stretcher.

19. Nine days later Mrs A sadly died.

Commencing timely treatment

24. 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 found the Trust provided care and treatment in line with guidance.

25. Mrs O said in October 2024 her mother was experiencing significant pain which was impacting on her mobility. The GP requested blood tests and a scan. On receipt of these results, the GP referred Mrs A immediately to the hospital.

26. Mrs O said she was admitted to the Trust and spent three weeks there undergoing tests but not receiving any treatment.

27. Mrs O said, after diagnosing stage four ovarian cancer which had spread to the liver and surrounding areas, the Trust discharged her with no plan or support in place. She said the Trust told Mrs A she would receive a letter in the next couple of weeks detailing when chemotherapy would start.

28. Following a further appointment with the consultant, Mrs O said they were advised chemotherapy would start on 9 December 2024.

29. Mrs O is concerned the Trust stalled so long before starting treatment, that by the time the chemotherapy was supposed to start, her mother had deteriorated to the extent she was too unwell to undergo the treatment.

30. The Trust does not respond specifically to this part of Mrs O’s complaint. It states the consultant first met Mrs A as a new patient at the beginning of December 2024, with plans to commence chemotherapy. They provided Mrs A with the cancer nurse specialist's phone number for any concerns.

31. The Trust said unfortunately, Mrs A's health deteriorated. She attended the chemotherapy clinic mid December 2024. It said the consultant was absent that day, but a registrar correctly advised that she was too unwell for chemotherapy. Given the significance of this decision, the registrar appropriately offered her an appointment to be reassessed by the consultant the following week.

32. NICE guidance CG104 sets out what investigations are necessary to determine a diagnosis when the origin of the cancer is unknown. This includes a comprehensive history and physical examination, alongside clinically appropriate test including a biopsy.

33. We can see the Trust admitted Mrs A under oncology. Records indicate the Service was unclear about the origins of the cancer. At the end of October 2024, we can see Mrs A’s case was discussed at three multidisciplinary team (MDT) meetings involving breast, upper gastrointestinal (digestive system) and gynaecology input.

34. The Service determined Mrs A needed to undergo a biopsy to understand the cancer. The MDT reviewed the results of the biopsy towards the end of November 2024. The MDT diagnosed Mrs A with stage four ovarian cancer which had spread to the surrounding areas. They agreed a treatment plan.

35. We can see from the records the oncology consultant discussed Mrs A’s diagnosis and treatment options with her. She consented to treatment. This was planned to commence on 9 December 2024, 14 days later.

36. We asked our adviser whether they considered the Trust assessed and treated Mrs A in a timely manner and inline with guidance.

37. They considered the Trust carried appropriate tests and assessment in order to come to a diagnosis and prognosis, and to determine treatment. They said the Trust acted in line with NICE CG104 guidance by carrying out thorough assessments, investigations and ultimately a biopsy. They did not identify any undue delay in the records.

38. They also highlighted NHS England ‘National cancer waiting times monitoring dataset guidance’ which sets out the timescales that Trusts should follow from the decision to treat to the earliest clinical appropriate date for treatment of cancer. This should be a maximum of one month (31 days).

39. We can see once the Service had established the origin of Mrs A’s cancer, it arranged for treatment to commence 14 days later. This is clearly within the 31 days set out by NHS England.

40. It is evident Mrs A’s health deteriorated rapidly. We are so sorry she deteriorated so quicky and to such an extent that she was unable to undergo treatment. We realise how difficult and frustrating it felt for Mrs O to be navigating the healthcare system during such a challenging time. We can see the Trust acted in line with guidance and within established timescales in its treatment of Mrs A.

Collaboration across the Trust

41. Mrs O complains about the lack of collaboration and information sharing across the Trust. She said this meant they had to intervene as a family and chase up referrals and request support.

42. The Trust response refers to various interventions and multidisciplinary actions that it carried out during Mrs O’s hospital admission and afterwards. It said she was seen by an occupational therapist whilst in hospital who provided her with social service details.

43. It refers to the nursing support it provided with regards to chemotherapy advice, a referral to McMillan, and the provision of an electronic holistic needs assessment checklist.

44. The Trust said it referred Mrs A to the district nurses, and later to the palliative care team. The Trust added it does not manage the palliative care team so is not responsible for their actions.

45. The UKAOS information refers to the vital role of acute oncology services (AOS) in the management of patients diagnosed with cancer following emergency attendance. An AOS provide coordinated, multidisciplinary care for cancer patients experiencing urgent or emergency complications related to their disease or treatment.

46. UKAOS says acute oncology teams have a key role in providing specialist oncology advice and guidance. It sets out the aims and objectives for patient care which includes early access to appropriate site specific teams, early appropriate involvement of specialist palliative care, appropriate investigation, psychological and emotional support for the patient and carer, treatment options and decision making, ambulatory (outpatient) investigation pathway and discharge planning.

47. We have seen evidence of an AOS within the Trust. We can see an AOS report dated the end of October 2024. The Service saw Mrs A, alongside her husband and daughter. They discussed with her the next steps of the cancer pathway, treatments, risks, benefits and side effects versus supportive care.

48. Good Medical Practice point 24 says, ‘all patients have the right to be involved in decisions about their treatment and care, and be supported to make informed decisions if they are able to. You must start from the presumption that all adult patients have capacity to make decisions about their treatment and care’.

49. In line with Good Medical Practice, the AOS informed and consulted with Mrs A about her care. Mrs A told them she wanted to be considered for further investigations and treatments.

50. As detailed above we can see evidence of MDT meetings during her admission.

51. The AOS recommended referrals were made to the gynaecology MDT, occupational therapy/physiotherapy and to palliative care.

52. We have seen evidence in the records the Trust referred Mrs A to the district nurses and community palliative care team.

53. We are sorry Mrs O feels her mother was poorly supported during her time under the Trust. We understand how distressing this time must have been for Mrs A and the family. We cannot comment on the care provided by the palliative care team because the Trust is not responsible for this service. We have seen the AOS carried out its role in line with GMC Good Medical Practice guidance.

Appointments and communication

54. Mrs O complains about the management of outpatient appointments. She said her mother’s health was deteriorating and it was a struggle for her to attend appointments. She cancelled one because she was unsure what it was for and she was too exhausted to attend.

55. Mrs O said this meant the Service then cancelled the appointment for the start of chemotherapy.

56. She said her mother then attended the new appointment but by this time she had lost her mobility and the family really struggled to get her there. She complains that they were then informed the consultant was absent from work. Mrs O said a registrar informed them that Mrs A was too sick for chemotherapy and made an appointment for her to return the following week.

57. Mrs O told us they attended the appointment the following week. By this point, they needed an ambulance and stretcher to get Mrs A to the appointment. The appointment was at 11.30am. Mrs O says it was pointless and the family felt very much dismissed with the consultant seeing them for about 10 minutes. Her mother was then left on a trolley until 4.30pm.

58. Mrs O said the appointments were extremely difficult for her mother. She feels they were useless, communication was poor and she questions why the Trust could not have offered alternative forms of appointments, such as video consultations.

59. Mrs O complains about the communication of treatment and options to both Mrs A and the family. She said the information was unclear and delivered poorly.

60. In its response the Trust talks through the appointments. It said when Mrs A cancelled her appointment at the beginning of December 2024, the nurse tried to call her (without success) and made a referral to palliative care, as directed by the consultant.

61. It acknowledged the consultant was not in the clinic for the next appointment, but that a registrar saw Mrs A. It said the Service referred Mrs A to the district nurses and made an appointment for her to return the following week for a face-to-face appointment with the consultant to assess Mrs A’s fitness for chemotherapy.

62. The Trust talked about the following appointment. It said had the consultant known Mrs A required an ambulance and stretcher to get her to the appointment, they would have advised her not to attend and would have assessed the situation over the phone.

63. The Trust also explained chemotherapy clinics are busy with patients allocated just 15 minutes for appointments. The Trust said the consultant apologised if the family felt they lacked empathy. The Trust added, delivering and hearing the news that no treatment options are available is difficult.

64. Good Medical Practice point 28 says, ‘the exchange of information between medical professional 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 diagnoses and prognosis • the options for treating or managing the condition(s), including the option to take no action’.

65. We can see from Mrs A’s clinical records the appointments as set out by Mrs O and the Trust.

66. We know the registrar informed the family that Mrs A was too unwell for chemotherapy. We understand they wanted to offer Mrs A an appointment to discuss this further with the consultant the following week.

67. We understand Mrs A’s health was deteriorating rapidly. This was evident in the cancelled appointment, and the appointment she attended by wheelchair. We cannot see any evidence of the family informing the Trust ahead of the last appointment about the further decline in Mrs A’s health.

68. We asked our adviser whether the Trust managed the appointments appropriately. Their view was that it was appropriate for the registrar to see Mrs A in the absence of the consultant. It was unfortunate for Mrs A that they were away from work that day but this is not a failing by the Trust.

69. They said clinics are busy and staff cannot contact families before appointments to check on their health status. Our adviser felt this is an extremely sad case of a person’s health declining extremely rapidly. They recognised how difficult this must have been for Mrs A and the family.

70. We can see both the registrar and the consultant explained the prognosis and lack of treatment options to Mrs A. We understand Mrs O felt professionals did not share this information sensitively or respectfully. The Trust said the consultant was sorry if the family did not feel they had shown empathy.

71. It is important for us to acknowledge that we were not present at the time to independently know what, and how, things were said. We realise this was a highly distressing time, and the news that there were no further treatment options for Mrs A must have been very difficult to hear. We also recognise that people involved in the same conversation can sometimes have different impressions of its content and what happened. One person’s perception of what was said does not invalidate another person’s opposing perception of the same comment.

72. We are sorry Mrs A found these last appointments of her life so challenging. We cannot see indications of failings by the Service in its management of these appointments.

73. We can see from clinical records information was shared and discussed with Mrs A and the family. We appreciate how distressing it must have been for Mrs O to feel uncertain about the information the Service shared. While we cannot confirm exactly what was said and how, we understand the emotional impact that effective communication, or lack of it, can have during difficult times.

End-of-life care

74. Mrs O complains about how the Trust managed Mrs A’s end-of-life care. This includes the aforementioned appointments and communication issues. She also refers to the lack of support provided to her mother and father by the Service.

75. She particularly complains about the role of the palliative care team and lack of support it provided to her mother at home.

76. We cannot consider the role of the palliative care team because as indicated in the Trust response, it is not responsible for this service. We have considered the Trust’s involvement as Mrs A moved towards end-of-life care.

77. The Trust expressed regret about the final appointment Mrs A attended by ambulance. It said it was clear at this point Mrs A was not fit for chemotherapy and there was no further anti-cancer treatment it could offer. The Trust said the consultant recognised Mrs A needed symptom control, community nursing input, and comfort. It said Mrs A was keen to return home and the priority was to get her home with palliative care and nursing support.

78. The service had previously made referrals to the district and nurses and palliative care. It followed these up when the family indicated no one had visited Mrs A in the past week. It was advised these referral had been acted on and both services had visited Mrs A in the past week.

79. NICE guidance NG142 highlights the importance of identifying adults who may be approaching the end of their life. Point 1.1.1 says, ‘people managing and delivering services should develop systems to identify adults who are likely to be approaching the end of their life … this will enable health and social care practitioners to start discussions about advance care planning, provide the care needed, and to support people’s preferences for whether they would like to be care for and die’.

80. We can see from the discharge letter to the GP, Mrs A attended her last appointment with the service by ambulance and stretcher. Her performance status was now identified as four. A performance status is how oncologists describe how much a patient’s cancer is affecting their day to day function. Status four means, ‘totally disabled. Cannot carry on any self-care. Totally confined to bed or chair’. A week prior her performance status was documented as three. This indicates how quickly Mrs A was sadly declining.

81. The discharge letter notes Mrs A was suffering a pressure sore and leaky oedematous (swollen) legs. It identified she was not fit for systemic treatment and the letter indicates the Service explained this to her.

82. We can see from records the Service chased up the previous referrals made to the district nurses and community palliative care team. The Service advised the GP the priority was for symptom control and Mrs A’s preference was to be at home.

83. Our adviser considered the Service provided appropriate end-of-life care to Mrs A. They reiterated the rapid decline Mrs A sadly experienced. In line with guidance, the Trust recognised Mrs A was approaching the end of her life, discussed this with her, informed the GP, and followed up referrals for support at home.

84. We do not underestimate how greatly the death of Mrs A has affected Mrs O and her father. We can see how brief the time-frame was from diagnosis to the time of Mrs A’s death. We realise how upsetting and shocking this must have been.

85. We will not be investigating Mrs A’s complaint further. It is important to acknowledge that where we have not identified any indications that something went wrong, it does not detract from the family’s experience, nor the impact this has had on them.

1. We have carefully considered Mrs O’s complaint about the care and treatment University Hospitals of Leicester NHS Trust (the Trust) provided to her mother, Mrs A. We are very sorry to hear about Mrs A’s rapid deterioration due to cancer. We offer our sincere condolences to the family and recognise the great loss they feel.

2. We appreciate Mrs O’s concerns. From the evidence we have seen, we consider the Trust acted appropriately and in line with guidance with regards to the treatment it provided, the collaboration between departments, communication and end-of-life care.

3. We acknowledge the pain and distress Mrs O and her family have experienced during this time of loss. We understand this report cannot change what happened. We hope it provides some clarity and reassurance as they navigate their grief.