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University Hospitals Sussex NHS Foundation Trust

P-004872 · Statement · Decision date: 23 February 2026 · View University Hospitals Sussex NHS Foundation Trust scorecard
Diagnosis End of life care
Complaint (AI summary)
Mrs K complained about misdiagnosis, delays in stroke treatment, placement in a general ward, inadequate repositioning leading to pressure sores, failure to act on dropping oxygen levels, constipation mismanagement, and poor end-of-life communication.
Outcome (AI summary)
The complaint was closed. Some issues were found, including scanning delays and infrequent repositioning. The Trust took sufficient action regarding constipation. There wasn't enough evidence to reach a decision on other issues.

Full decision details

The Complaint

8. Mrs K complains about the care her mother, Mrs U, received from University Hospitals Sussex NHS Foundation Trust (the Trust), in February 2024. She complains:

• of a misdiagnosis and delays in diagnosing and treating a stroke

• staff admitted Mrs U to a general ward, instead of neurology so she missed out on specialist care. It also resulted in an attack by a confused patient, without staff intervention before or after

• ward staff did not reposition her often enough, resulting in pressure sores, which staff did not treat sufficiently once detected

• ward staff did not act on her dropping oxygen levels throughout her stay despite alarms sounding

• ward staff did not recognise Mrs U had not opened her bowels since admission and so, delayed providing laxatives. Once it provided laxatives, it gave her no continence pad

• staff did not communicate that the family had a care passport, which caused confusion about who would carry out various care tasks and meant they were unaware that enhanced visiting hours were available

• of contradictory actions and confusing communication around whether Mrs U was nearing the end of her life, which resulted in her receiving no palliative care before she died and further confusion about her cause of death

• staff did not intervene to prevent a confused patient shouting and shaking the curtains during Mrs U’s final hours.

9. Mrs K says the issues of poor care significantly affected Mrs U's final weeks, leaving her in pain and discomfort. She says she had to support many of her mother's care needs, whilst the lack of information about a care passport resulted in confusion and on occasion, unnecessary confrontation which detracted from the quality of time they could spend together.

10. She says the poor communication about whether Mrs U was nearing the end of her life meant she could not go home to die, which was her wish. She says her mother's death on the ward was without peace and lacked dignity and that factor has caused her significant additional distress.

11. By making this complaint, Mrs K is seeking service improvements to prevent any identified mistakes happening to others, a written apology acknowledging specifically what went wrong and appropriate financial redress to recognise the impact caused.

Background

12. On 4 February 2024 at 4.57pm, an ambulance conveyed Mrs U to A&E with exacerbation of existing COPD and new FAST stroke symptoms. She had a CT scan which confirmed a stroke. She received interventional medications, and staff admitted her to the Emergency Floor to await ward placement.

13. Between here and her next ward transfer on 10 February, Mrs U developed an infection, and her overall condition deteriorated.

14. She was moved to a general ward, and on 12 February her infection progressed to aspiration pneumonia. The next day, she was placed on a ‘do not attempt resuscitation’ order (a DNAR).

15. On 14 February, staff warned that they had reached Mrs U’s ceiling of care. She remained an inpatient on the general ward, where she deteriorated further. Mrs U died on 21 February 2024 at 8.47am of aspiration pneumonia, complications of a stroke and breast cancer.

Findings

Stroke diagnosis

19. Mrs K complains that despite arriving via ambulance with stroke symptoms at 5pm, staff did not provide specialist assessment until around 11pm. She complains that this in turn delayed the CT scan that went on to confirm the diagnosis.

20. Because of the delays, Mrs K believes her mother missed out on vital early intervention. She says this inaction led to a poorer outcome and reduced quality of life in what proved to be her final weeks.

21. The Trust apologised that the department was very busy when Mrs U arrived. It said staff performed a CT scan at 11.23pm, with the results arriving at 5am the next day, confirming a stroke.

22. The Trust explained that patients with a suspected stroke typically follow the four-hour thrombosis pathway, which thins the blood. It said Mrs U was not eligible for this because her symptoms had begun the previous day, and because her existing blood thinners meant she would be at risk of bleeding if she received any more.

23. The Trust follows a local pathway for interventional stroke treatment - Acute Interventional Treatment for Stroke (Thrombectomy) (August 2022). Our neurology adviser highlighted that Mrs U had taken an anticoagulation medication earlier in the day, which meant she was not suitable for more blood thinning medication. This decision was in line with local policy.

24. Regarding diagnosis, the National Stroke Service Model (May 2021), says that if staff clinically suspect an acute stroke, they should perform a CT scan within 20 minutes. If there is uncertainty, or mild symptoms, optimal diagnosis is achieved through an MRI, within one hour.

25. Mrs U received a CT scan at 11.23pm. We can therefore see evidence there was a delay in confirming a diagnosis, because the staff exceeded the longest timescale set out in the service model by five and a half hours. However, the service model does hold the caveat that this pathway is based on full staffing and equipment availability, and we know from the Trust’s account that the latter was a problem.

26. We considered what would have happened if Mrs U had been scanned within the timeframe and whether this would have changed the outcome.

27. Mrs U’s scan confirmed an established right middle cerebral artery (MCA) territory infarct. Our neurology adviser explained this meant the stroke had happened in the past, usually by at least a few days. This was in line with the history provided by the family on admission, who advised her symptoms had begun the day before.

28. This was a significant delay, and we can appreciate the urgency and worry of knowing something more should be happening when it was not. Whilst this does not take away from the experience, our neurology adviser could see that the delay in scanning Mrs U caused no changes to the treatment she went on to receive. This is because the scan showed what staff already suspected and because she was already on appropriate anticoagulant medication for the problem.

Ward placement

29. Mrs K complains her mother was admitted onto a general ward, in place of a stroke ward, where she could receive specialist reviews and care. On the general ward, she says her mother should have been placed in a side room away from other patients because she had limited mobility. Instead, she says Mrs U was placed in a bay where on one occasion, she was unable to defend herself from a confused patient who tried to attack her. She also complains about the lack of staff response during this incident, which resulted in her having to put that patient back to bed herself three times.

30. The Trust explained that Mrs U’s breathing problems were her most urgent problem, so a general ward was the best place to care for her. It said this did not impede discussions between specialisms which still took place regularly.

31. It was profoundly sorry that Mrs U was shaken by a confused patient and explained this had occurred due to a shortfall of staff available to monitor the bays. The Trust said staff did respond swiftly and noted there had been no injuries as a result of what happened. However, the investigation into Mrs K’s complaint identified that staff had not properly recorded the incident, and the Trust confirmed it had reminded staff about the importance of formal recording.

32. The records show that in addition to a suspected stroke, Mrs K was experiencing exacerbation of her chronic obstructive pulmonary disease (COPD). A few days later, she was also diagnosed with aspiration pneumonia. Our neurology adviser considered the care and treatment she received on the general ward in terms of her stroke. She was assessed by Neurotherapy, speech and language therapists (SALT) and the intensive care unit (ICU). Our neurology adviser was satisfied that her care and treatment would have been no different if she had been allocated a bed on the stroke ward.

33. We can recognise Mrs K’s wish for her mother to be placed in a side room. It would undoubtably have been a calmer environment. Though Mrs U was clearly vulnerable, Mrs K’s account itself highlights other patients on the ward who were vulnerable too. National guidance that stipulates room placement is connected to specific goals, such as psychiatric protection, immunosuppression, and infection control. Neither pneumonia nor stroke NICE guidance stipulate a side room and when we couple this with the well-known problem of bed availability across the country, we cannot see that her bay placement was inappropriate.

34. Though we do not know the specifics of the patient strike, all parties agree that something did happen. NHS England’s policy for Recording Patient Safety Events and Levels of Harm (October 2024) sets the framework for identifying levels of harm resulting from a safety incident. This policy categorises the result of this event as ‘no harm’ and directs staff in this scenario to respond and take learning from incidents that are proportionate to the events, rather than providing specific steps.

35. When we consider the actions set out by NHS England, we do think the Trust did respond proportionately. It has apologised and whilst we can appreciate this feels insufficient to Mrs K, we do think that the apology, and the steps the Trust took as a result were sufficient to ensure similar events are formally recorded in the future.

36. It is likely the events caused Mrs U upset, particularly because she was so unwell, and the events must have been very frustrating for Mrs K. This does not take away from Mrs U or Mrs K’s experience, but it does mean we cannot see good reason to consider this further.

Pressure sores

37. Mrs K complains that staff did not reposition Mrs U often enough, in line with its policy, to account for her limited mobility, so she developed pressure sores. She says staff used an air flow mattress but should have done more because her mother was still feeling sore.

38. The Trust noted Mrs U was feeling sore on admission, and because her skin was intact but vulnerable, staff moved her to another mattress. A few weeks into her admission the Trust said staff had also agreed to roll Mrs U onto either side more frequently.

39. The records show that Mrs U had a pressure sore assessment, which deemed her at risk and directed staff to reposition her every two to three hours, documenting any changes. The charts provide eight positions to help inform staff and these show on a couple of occasions in her first week, Mrs U was not moved as frequently as she should have been. Although the periods were minimal, the records for the following week also reflect the same problem. This shows that staff did not care for Mrs U in line with her pressure sore care plan.

40. Mrs U developed a pressure sore on her sacrum on 11 February. In addition to the plan of regular repositioning, staff moved her to an air mattress and began using medical honey. This was in line with the guidance attached to its pressure sore assessment paperwork.

41. We asked our nurse adviser whether the pressure sore Mrs U developed in hospital could have been prevented if she had been repositioned more. Unfortunately, our adviser explained that the lack of repositioning on those occasions would certainly have contributed to the development of the sore. This indicates that Mrs U’s pressure sore could, potentially, have been avoided.

42. However, our nurse adviser also highlighted several factors that meant this may have been unavoidable, even if staff had followed her pressure sore plan exactly. The records document that for 12 days prior to admission Mrs U had been moving around less, because she was experiencing breathing difficulties. She had diarrhoea for three days prior, and on admission, she also reported having a very sore bottom. Our nurse adviser explained that all of these factors meant that prevention of a pressure sore developing in that area would have been challenging from the outset. These factors combined with further reduced mobility due to her deteriorating clinical condition made prevention even more difficult.

43. Mrs U’s pressure sore was graded a category two and did not worsen, but the evidence does indicate that she was not given the best chance to avoid the problem. To reach a view, we would need to understand just how much the lack of repositioning contributed to the development of the pressure sore. Our nurse adviser explained that accounting for all factors before and during admission, it simply would not be possible to quantify. Whilst the inactivity contributed, we cannot say the pressure sore would have been avoided with consistent repositioning.

Oxygen

44. Mrs H complains that due to having pneumonia, Mrs U’s oxygen levels kept dropping and she struggled to breathe. She says staff would fail to hear the oxygen alarm sounding, until a family member alerted them. She says this happened daily.

45. The Trust said it was sorry the family had to alert staff to the alarm, but confirm staff did document and escalate concerns about Mrs U’s oxygen. It said this alarm should prompt immediate review, and this had since been raised in daily meetings, along with planned oxygen management training for the ward team.

46. The records show staff were largely aiming for oxygen saturation of 88 to 92%. Mrs U’s charts show that she dropped below this several times on different days between 12 and 16 February. The records reflect Mrs U’s anxiety and on occasion, panic about her breathing, so it must have felt very drastic when this happened.

47. We asked our nurse adviser to explain the effect dropping oxygen levels had on Mrs U. They described faster breathing with shorter breaths, increased heart rate, anxiety, agitation, and confusion. The records unfortunately do reflect that Mrs U felt anxious and distressed about her ability to breathe.

48. We asked our nurse adviser what should happen when Mrs U’s oxygen levels did drop, so we can compare that to what did happen.

49. The Nursing and Midwifery Council (NMC) The Code (March 2015), says that nurses should accurately identify, observe and assess signs of normal or worsening physical and mental health in the person receiving care. Our nurse adviser explained that in other words, dropping oxygen levels should prompt an immediate review from nursing staff. The guidance also directs staff to refer or make a timely referral to another practitioner when any action, care or treatment is required.

50. The records reflect staff knew about the problem. In line with the guidance, our nurse adviser noted that nursing staff were closely monitoring her oxygen saturation levels. When she desaturated, nursing staff escalated the problem to a doctor for review. Mrs U was also referred to the speech and language therapist because nursing staff recognised that this was happening after eating and drinking.

51. Mrs U’s oxygen levels dropped a handful of times during her stay, so we can appreciate Mrs K’s need to be reassured that staff were vigilant. We have seen evidence that shows staff worked within NMC guidance when assessing and responding to Mrs U’s fluctuating oxygen levels, but we can appreciate any perceived lack of attentiveness will only have contributed to that panic.

52. The records do not show whether Mrs K alerted staff to each sounding alarm, but the Trust do accept that this happened.

53. Our Principles for Remedy say that if an organisation identifies it got something wrong, it should apologise and take steps to ensure it learns from the mistake.

54. The Trust has recognised that at least once, Mrs K did have to alert staff when her mother’s oxygen alarm sounded and apologised for her poor experience.

55. The records show staff took prompt action in line with NMC guidance. The Trust has recognised and apologised for the poor experience and has taken action to eliminate any potential response delays going forward through extra training. Thankfully, there is nothing to suggest that any delays caused any clinical detriment.

56. When we consider what happened, we are satisfied that Mrs U’s clinical care was within national guidance, and the Trust has appropriately remedied Mrs K and Mrs U’s poor experience in line with our Principles for Remedy.

Constipation

57. She complains that staff did not recognise Mrs U had not opened her bowels since admission and so, delayed providing laxatives. Once it provided laxatives, staff did not fit a continence pad and failed to check on her. She says she had to apply the pad to her mother.

58. The Trust said staff had initially been reluctant to give Mrs U a laxative because she had experienced three days of diarrhoea prior to admission. However, it did accept staff should have been more proactive in monitoring her bowel movements, particularly when she began to experience abdominal pain. It recognised it could not now change Mrs U’s experience and apologised unreservedly for the missed opportunity.

59. Going forward, the Trust said it had created a prompt at the top of each clinical handover to check the last recorded bowel movement of each patient.

60. The Trust also recognised that Mrs U was bed bound, and accepted staff should have considered her care needs fully when they did administer laxatives.

61. It said the importance of care planning when giving this kind of medication had been raised in staff meetings as a learning point for all staff, who had also been reminded not to rely on the family to mitigate these sorts of issues.

62. The NMC Code sets out the fundamentals of care, including bladder and bowel care. It says patients should be kept in hygienic conditions.

63. The British Geriatric Society (BGS) Improving Healthcare in Older People states that the use of this chart prevents older patients from becoming constipated and suffering further complications as a result.

64. Our nurse adviser explained that nursing staff monitor a patient’s bowel movements through a daily stool chart. These charts are inconsistent. Staff note on occasion in Mrs U’s daily rounding that she has not opened her bowels, but there is no evidence of the matter being responded to or escalated. The records show a doctor recognised this as part of a medical review on 9 February, five days after admission.

65. We approached our nurse adviser to assess whether the lack of recognition led to any clinical detriment for Mrs U. The records do not show Mrs U in any discomfort, but we know from Mrs K’s account and from the Trust’s, that she experienced abdominal pain.

66. When we compare what happened to what should have happened, we can see the Trust did miss an opportunity to provide laxative treatment to Mrs U, perhaps a few days sooner than it did. This is because staff did not work within NMC and BGS guidance.

67. We approached our nurse adviser to assess whether the lack of action led to any clinical consequences or further complications, as warned by the BGS. Our nurse adviser could not identify any significant detriment as a result, outside of that discomfort.

68. This admission proved sadly to be at the end of Mrs U’s life, so we can agree that the Trust cannot change this experience now. Although the delays in action should not have happened, we do think it was correct to apologise to Mrs K, and that the new clinical handover prompt will reduce the chance of this happening to another patient.

69. The records do not reflect any incontinence once Mrs U received laxatives on 9 February. It seems that Mrs K effectively mitigated this when she applied the pad, and the Trust accept there would have been no need for this, had staff planned appropriately at the time.

70. In line with our Principles for Remedy, we are satisfied the Trust has taken the steps it needed, to ensure service improvements for other patients.

Care passport

71. Mrs K complains that Trust staff left her to tend to her mother’s needs without making it clear that was the expectation. She says the Trust told her after the fact that familial tasks formed part of Mrs U’s Care Passport – a document she had no knowledge existed. Had she known, she says that she would have stayed all night.

72. The Trust said that Mrs U’s family had a carers passport, which allowed them to attend outside of visiting hours to help with her care needs. It was sorry that communication around care tasks had not been sufficient, and said staff had been asked to ensure they did not make assumptions of this nature in the future.

73. The Trust’s website explains a carers passport is a small card, issued by nursing staff to a patient’s family member, which allows that named person to visit the patient outside of visiting hours. The Trust says it issued this card, and Mrs K says she had no knowledge of its existence. The only record of the carers passport is a single hand written comment in the nursing notes at 1.45pm on 17 February, which notes the family have one.

74. The Trust’s website says that overnight visiting only applied to the people named on the card and instructs families to return these cards to nursing staff at the end of the patient’s care. Neither the Trust nor Mrs K hold a copy of this card. One possibility is that nursing staff issued a carers passport to a different family member and they neither used it, nor returned it. This would explain why the card is not on file if it was issued. It is equally possible that staff never gave it to the family or, that the staff member who once documented its existence in the notes was mistaken. In summary, we do not know who staff issued the card to, or if they even issued it at all.

75. The Trust’s website also explains a carers passport is primarily for patients with dementia, which Mrs U did not have. When we consider what should have happened, we cannot even say that Mrs U should have had this card.

76. Mrs K says that she would have stayed overnight if she had known that the option was available. The records do show Mrs K at her mother’s bedside outside of visiting hours on a couple of occasions beyond the date the carers passport is documented. This indicates that even if Mrs K did not know about the card, she was still able to take advantage of the extended visiting hours that the card afforded, which limits the impact caused by any confusion that may have arisen.

77. There was clearly a breakdown in communication between Mrs U’s family and nursing staff regarding Mrs U’s hygiene and general care. A neuropathy assessment documented that before admittance, Mrs U received assistance washing, dressing and toileting, from her daughter. It is possible the assumption has arisen from this document.

78. Mrs K has provided specific examples, such as finding her mother in a bloody sheet, as well as describing events in which she was admonished by staff, due to that lack of clarity in who was doing what. However, these examples do not feature in the notes. All things considered, there is not enough available evidence to enable us to investigate those incidents individually.

79. The Trust has apologised for making assumptions about how much the family wanted to be involved in Mrs U’s care. Mrs U did not miss out on any care because of that extra help, which is reassuring to see.

80. The Trust has also raised awareness of the issue with the staff concerned. With the apology, and the limited impact, we do think those actions are sufficient to address the frustration caused and ensure staff take care to check with a patient’s family members in the future.

End of life

81. Mrs K says staff regularly gave contradictory information about whether Mrs U was at the end of her life. She says staff administered morphine because she was approaching the end of her life, but the following day had her resume normal tasks such as lifting objects. She says this was confusing and left the family unable to prepare for what was to come.

82. She complains that because Mrs U was only properly deemed at the end of her life when she was close to death, her sister was unable to be present. She says her mother also missed out on palliative care, and she was unable to die at home.

83. Mrs K complains that she had no knowledge her mother had breast cancer, until she saw it on the death certificate.

84. The Trust said that staff had warned close to admission that Mrs U’s symptoms were likely to be life limiting, and she had agreed around two weeks later that she did not want to be resuscitated should the need arise.

85. It said that Mrs U was showing minimal response to a combination of oxygen and antibiotics, so staff decided to watch and wait. However, on 16 February staff held a meeting which deemed Mrs U too unstable to send home, and on 19 February, staff instigated end of life care.

86. The records show Mrs U was receiving oral morphine from 5 to 14 February to alleviate the distress and anxiety she was experiencing due to breathlessness. After 14 February she received the same dose by injection, but the documented purpose was the same. Mrs U was not formally deemed end of life until 19 February and we cannot see that there is a connection between the administration of morphine and the preparation for Mrs U’s death.

87. The records show that Mrs U had deteriorated first with high infection markers and then aspiration pneumonia. Written notes show different medical professionals with the same concern - that treatment may not work. We can therefore recognise that Mrs K likely heard this concern from staff multiple times.

88. A doctor notes on 14 February that Mrs U had reported feeling the same as the day before, with no deterioration. This is in line with the Trust’s account that staff had decided to watch and wait. However, that evening Mrs U deteriorated significantly and staff sadly documented that they felt she had reached her ceiling of effective treatment. A doctor advised Mrs U and a family member that she had a very poor prognosis, and although that morning’s improvement may have been a false flag, staff wanted to continue active treatment just in case they were wrong. Although ultimately treatment was unsuccessful, we could not criticize staff for these efforts.

89. The records show Mrs U was deemed end of life on the morning of 19 February, two days before she died. The notes reflect detailed input from Mrs U and the wider family, which must have been a difficult and upsetting discussion. Prior to this her records reflect that she was on active treatment, which is the opposite of palliative care.

90. Mrs U’s active treatments were stopped at 1pm on 19 February, following the discussion and with her documented consent. The notes document that she was to receive medications as required to make her comfortable, and in the event, she experienced concerning symptoms, the palliative care team should provide input.

91. The Trust’s palliative care information on its website tells patients that the palliative care team attends the ward that the patient is on to provide personalised support through Comfort Care measures. The records show staff began Mrs U’s Comfort Care document at 2pm on 19 February and updated it daily from that point.

92. When we consider the timeline of events, we can see clear evidence that Mrs U gave informed consent for palliative treatment, which staff instigated in line with what the Trust advises that patients can expect to happen. We hope Mrs K finds it reassuring to know that all actions took place promptly.

93. The records do reflect that Mrs U had a diagnosis of breast cancer, but this had been confirmed on an earlier occasion than the admission in February. It must have been confusing and distressing for the family to learn of this after Mrs U had died. There is nothing in the records to show that it was Mrs U’s wish for doctors to inform her family of the diagnosis. Therefore, staff were correct to maintain Mrs U’s doctor-patient confidentiality.

Mrs U’s final hours

94. She complains Mrs U was in her final hours and remained on a ward, in a bay, accessible to other patients. As a result, a confused patient kept approaching Mrs U’s bed and violently shaking the curtains that provided the only privacy.

95. The Trust said it was profoundly sorry that the family felt there was no dignity the night Mrs U died.

96. The Trust has apologised, but we can recognise that any apology is unlikely to be sufficient on its own, for how the events left Mrs K feeling.

97. We very much want to provide Mrs K with the answers she seeks, but we must also investigate a complaint impartially to reach a balanced view. In doing so, we face the same challenge as before, in that there is nothing in the notes to reflect these events. Whilst we do not doubt Mrs K’s account, through an impartial investigation, we are unable to corroborate it either. With no other viable way to corroborate what happened, we do not have sufficient evidence available that would allow us to reach a view. If we are unable to reach a view, we cannot consider this complaint further. The outcome is regrettable, and we acknowledge it is not what Mrs K was hoping for, but this does mean we are unable to investigate this issue further.

98. In summary, we have considered Mrs K’s complaint in line with national standards and guidance, and with independent input from two expert specialists. Having done so, we have decided not to take any further action.

99. We cannot imagine how upsetting and distressing the period complained about must have been for Mrs K, and the rest of Mrs U’s family, and we recognise the outcome of our investigation may not be the outcome Mrs K was hoping for. However, we sincerely hope that this statement provides a better understanding of what was happening at each juncture and clearly explains how we reached our decision.

Our Decision

1. We have carefully considered Mrs K’s complaint about University Hospitals Sussex NHS Foundation Trust (the Trust).

2. We are truly sorry to hear of Mrs U’s death, and we do not underestimate how overwhelming Mrs K’s grief must have been at the time, and to this day.

3. We found indications that staff did not work within national standards and guidance when scanning Mrs U but thankfully, a prompter scan would not have changed her prognosis, or the treatment she went on to receive.

4. Staff did not reposition Mrs U as often as they should, but with so many contributing factors, we could not confidently say this would have avoided the development of a pressure sore.

5. Staff did not work within national guidance when recognising Mrs U was constipated, but we do think the Trust has taken sufficient action to remedy what happened and prevent similar mistakes happening in the future.

6. Regarding Mrs U’s care passport and her experience at the end of her life, unfortunately, there is not enough evidence to reach a decision.

7. Finally, we have seen evidence to show that Mrs U’s ward placement was appropriate, and her oxygen management was within national guidance.

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