University Hospitals Sussex NHS Foundation Trust

5. Ms X complains about aspects of the care and treatment provided to her late sister, Dr B, by University Hospitals Sussex NHS Foundation Trust (the Trust) in the period immediately before her death in November 2024. She says that: • the Trust did not recognise that Dr B, a known palliative cancer patient, was approaching end of life when she attended the Emergency Department on 30 October 2024 • the Trust inappropriately discharged her home on 30 October 2024 despite her frailty, living alone, her expressed reluctance to be discharged, and without appropriate community care in place, resulting in an unsafe discharge • the Trust did not adequately coordinate end-of-life care following this attendance • the Trust’s records inaccurately stated that she was happy with the discharge plan • communication about discharge by senior clinical staff lacked appropriate sensitivity.

6. Ms X says that as a result, Dr B was distressed and unsupported in her final days. She was re-admitted as an emergency on 1 November 2024 and later transferred to hospice care, where she died on 15 November 2024.

7. Ms X seeks an apology and assurance that the Trust has appropriate discharge and end-of-life care arrangements in place, including reflection on communication standards.

8. Dr B had advanced metastatic bowel cancer. In September 2024, clinicians confirmed her cancer had progressed and discussed that further chemotherapy was unlikely to provide significant benefit. A referral to community palliative care was made, but support was not yet in place.

9. On 30 October 2024, Dr B attended the Emergency Department after collapsing at home. She was assessed and discharged the same day.

10. On 1 November 2024, she was re-admitted following further deterioration. At that stage, clinicians recognised she was approaching the end of life. She was transferred to hospice care and died on 15 November 2024.

Issue 1 - Recognition of deterioration and end-of-life status

14. Ms X said the Trust did not properly take account of her late sisters advanced cancer, recent deterioration, and palliative status when she attended on 30 October 2024. She feels these factors were not reflected in the discharge decision.

15. The GMC guidance says clinicians should consider a patient’s overall condition, including frailty and underlying illness, when making decisions about care towards the end of life.

16. The NICE guidance on neutropenic sepsis says clinicians should urgently assess patients at risk, such as those receiving chemotherapy, if they become unwell. It says symptoms may be non-specific, including feeling generally unwell, tired or weak, so clinicians should have a low threshold for suspicion. It also says clinicians should carry out prompt observations, examination and blood tests to assess for infection. It also says that if neutropenic sepsis is suspected, treatment should be started without delay.

17. The records show staff carried out a detailed clinical assessment on 30 October 2024. Ms X’s sister reported increasing weakness, recent falls, reduced appetite and nausea. Her observations were stable, with no fever or signs of infection. Blood tests were within normal limits, and neutropenic sepsis was considered but ruled out in line with the NICE neutropenic sepsis guidance.

18. The records also show that all staff involved in the multidisciplinary team that assessed Dr B were aware of her background i.e. metastatic cancer diagnosis and that a referral to the palliative team was awaited.

19. The frailty guidance, RCEM guidance and the Silver Book, all recommend assessing frailty to help inform clinical decision-making. In line with this, staff completed a Clinical Frailty Scale assessment. This recorded a score of 5, indicating moderate frailty. The records also show she remained independently mobile at that time, although beginning to struggle.

20. Our adviser said the emergency departments assessment on 30 October was thorough and in line with the GMC guidance and NICE end of life guidance. They explained that while Ms X’s sister had advanced cancer and was likely approaching the end of life in a general sense, there were no clinical indicators on 30 October that she was in the last days or weeks of life, or that she needed an admission to hospital.

21. We consider the Trust acted in line with the above guidance and have not seen any indications that the Trust failed to recognise Dr B’s deterioration or palliative status on 30 October.

Issue 2: Discharge decision on 30 October 2024

22. Ms X said the Trust discharged her sister inappropriately despite her frailty, living alone, and reluctance to go home.

23. The RCEM guidance and the Silver Book say admission should be based on clinical need, such as acute illness or the need for treatment or monitoring. The discharge guidance says patients can be discharged where there is no clinical need for admission, provided appropriate follow-up is arranged.

24. The records show staff carried out a full clinical assessment and found no acute medical condition requiring admission. Dr B’s observations and blood tests were stable, with no evidence of infection or physiological instability.

25. She was reviewed by physiotherapy, who observed her mobilising independently within the department. They offered a walking aid and a pendant alarm, which she declined. They also offered additional support, which she also declined.

26. The physiotherapy notes record that she was reluctant to go home due to fatigue. In response to this, and in line with the discharge guidance, staff arranged follow-up through community services, including a referral for a home assessment.

27. Our adviser said there was no clinical indication for admission. They explained that admission to an acute medical bed would only be appropriate where there is an acute medical need, such as infection, significant instability, or the need for symptom control.

28. The notes show that Dr B remained independently mobile, had no evidence of acute illness, and declined support that was offered. Our adviser said, in these circumstances, the decision to discharge was appropriate.

29. Our adviser said it appears that Dr B’s condition deteriorated after discharge, and that when she re-attended on 1 November, she was clinically different and required admission at that stage (her frailty score had changed to 9). This does not mean the earlier decision to discharge was inappropriate.

30. We therefore consider it was appropriate, and in line with the RCEM guidance, the Silver Book and the discharge guidance, for the Trust to discharge Ms X’s sister on 30 October 2024. We have not seen any indications that the discharge decision fell below acceptable standards.

Issue 3: Coordination of care

31. Ms X said the Trust did not adequately coordinate her sister’s care following discharge.

32. The discharge guidance says patients can be discharged where there is no clinical need for admission, provided appropriate follow-up is arranged. It also says services should ensure patients are referred for support after discharge, particularly where they have ongoing or increasing care needs.

33. The records show the Trust arranged follow-up through the ECHO service (ECHO is a service that helps organise care for people after they leave hospital) with a plan for a home assessment shortly after discharge. This is a pathway designed to assess patients in their home environment and put appropriate support in place.

34. As above, at the time of discharge, Dr B had no acute medical condition requiring admission, and in line with the above guidance, community-based follow-up was considered appropriate. However, she was re-admitted before this assessment could take place.

35. Our adviser explained the referral to ECHO is part of a pathway designed to support patients in the community following discharge and was an appropriate referral to make in the circumstances.

36. Unfortunately, Dr B deteriorated quickly, and she was readmitted two days later, so this assessment could not take place. However, we have seen that the Trust arranged follow-up through an appropriate community pathway, in line with the discharge guidance, as such we have not seen any indications of failings in the Trust’s coordination of Dr B’s care.

Issues 4 and 5: Communication and documentation

37. Ms X said staff did not communicate sensitively with her sister about the discharge and incorrectly recorded that her sister was happy to be discharged.

38. The GMC good medical practice guidance says clinicians must keep clear, accurate, contemporaneous and legible records. These records should include relevant clinical findings, the information shared with patients, concerns or preferences expressed by the patient and whether these were addressed, as well as decisions made and actions agreed about their care and treatment.

39. The medical records show the discharge plan was discussed with Dr B and that, at the time of the initial medical assessment, she was recorded as being informed and happy with the management plan. The records note that the working diagnosis and management plan were explained to her.

40. The physiotherapy assessment later that day records that Dr B was independently mobile and was observed mobilising in ambulatory care. She was offered a walking aid for fatigue, a pendant alarm, and support with washing and dressing, but declined these. The records note she was reluctant to go home due to fatigue and was not accepting of therapy recommendations to help with energy conservation and reduce the risk of falls. She also declined community therapy support but accepted an urgent referral through the ECHO service for follow-up support and possible equipment needs at home.

41. We cannot determine from the available evidence exactly how conversations were conducted or whether staff communicated with empathy, as we were not present and there is no independent record of this. Therefore, we are unable to reach a decision on this part of the complaint.

42. However, the medical records show that staff discussed the discharge plan, recorded that Dr B was informed and happy with the management plan, and later recorded that she was reluctant to go home due to fatigue. We do not consider these records show that her views were recorded incorrectly. They show both her agreement with the discharge plan and her later reluctance to go home were documented. This is in line with the GMC good medical practice guidance.

43. Our adviser said despite Dr B’s reluctance to go home, the decision to discharge remained appropriate because there was no clinical indication for admission. Dr B’s observations were stable, she was independently mobile, and as above, staff offered appropriate support and follow-up, including community referral through the ECHO service.

44. We recognise this was a difficult time for Dr B and for Ms X and understand why Ms X has concerns about her sister’s discharge given that she was readmitted two days later. We have not seen any indications that the Trust failed to record Dr B’s views appropriately or that the decision to discharge was clinically inappropriate. As such, we will take no further action on this complaint.

1. We have carefully considered Ms X’s complaint about the care and treatment provided to her late sister by University Hospitals Sussex NHS Foundation Trust (the Trust). We are very sorry for her loss and recognise how distressing and important these concerns are.

2. We thank Ms X for taking the time to bring her concerns to us. We understand how important it is to know that her sister was listened to, treated with compassion, and received appropriate care.

3. After reviewing all the evidence, including independent clinical advice, we have not seen any indications of failings in the Trust’s clinical assessment, discharge decision, coordination of care, or communication about discharge. The records show the discharge plan was discussed with Dr B, she was informed of the management plan, and later concerns about going home due to fatigue were also recorded.

4. We have therefore decided not to take any further action on this complaint. We appreciate this may be a disappointing outcome and are sorry if this adds further distress to an already difficult time.