Leeds Teaching Hospitals NHS Trust

4. Mrs X complains about the care and treatment provided to her mother, Miss Y, by Leeds Teaching Hospitals NHS Trust between 30 July and 18 August 2023.

5. Mrs X says: • the Trust initially failed to obtain a testable urine sample and then later did not act upon positive test results in the right way • she was not listened to when she raised concerns that her mother’s illness was caused by a urinary tract infection (UTI) following her developing confusion initially and then becoming progressively less responsive from 10 August onwards • the Trust repeatedly discounted UTI as a cause for her mother’s increasing deterioration and so did not provide appropriate treatment until much later in her care.

6. Sadly, Miss Y later died. The cause of death was recorded as UTI. Mrs X says the above failings caused avoidable delays in her mother receiving treatment for the cause of her illness. She says her mother’s death was preventable with swifter action, and that knowledge of this has caused her family further distress in addition to them grieving the loss of her mother.

7. Mrs X seeks an acceptance of failings, service improvements, and a financial remedy.

8. Late on 29 July 2023 Miss Y was admitted to A&E at the Trust following approximately two weeks of increasing confusion and a more recent shortness of breath and some falls, due to a concern that recent medication changes may have contributes to these.

9. The Trust considered a recent increase in amitriptyline medication as a possible cause, as increased drowsiness is a known side effect. Miss Y’s dose of this was adjusted and her confusion cleared. Initial investigations established signs of a chest infection, and that she had injured her head falling. Mrs X notes she was not informed about the chest infection until her mother’s second week in hospital when a junior doctor informed her. A urine sample was also obtained, but not tested, due to an error labelling the sample pot.

10. Miss Y was prescribed antibiotics for the chest infection. A precautionary CT head scan also reassuringly identified no acute injuries, such as bleeds or a stroke from banging her head. This scan did, however, confirm changes in the brain indicating moderately severe onset of vascular dementia. Mrs X was also not made aware of this at the time, but this was noted in the medical records for planning future investigations.

11. This was consistent with a known medical history of Miss Y having previously suffered a stroke and a gradually increasing decline in her cognitive abilities in recent years. A preliminary plan was made to arrange updated testing of cognitive functioning, once she was better, to test the progress of vascular dementia.

12. Miss Y was kept in hospital over the next week to continue treatment. During this time, she was tested for urinary tract infections periodically, and her antibiotic treatment was altered several times based on input from the Microbiology team to eventually cover both chest and urinary types of infections.

13. Although Miss Y’s initial confusion and drowsiness seen upon admission had improved, this returned from around 10 August onwards. By 12 August she was considered physically stable enough to be discharged to East Leeds Recovery Hub, to continue her treatment as an inpatient and to monitor her cognitive state, until she could return home.

14. Her overall condition did not improve before her transfer, but Mrs X notes she was advised by a despatch co-ordinator that her mother would be in a better environment being cared for at the Hub than an acute ward in hospital.

15. Following a period of being relatively stable although still not well, during which she was reviewed by a GP twice, Miss Y then became unresponsive on 17 August without any clear cause. She sadly did not regain consciousness and died the next day.

Overview of care and cause of death 19. Mrs X’s underlying concern is that her mother had developed a UTI, this went untreated for some time, and this eventually contributed to her dying just under three weeks later.

20. The key points she highlights relating to this are: • NHS guidance, which she says shows confusion is a symptom associated with UTI’s and that antibiotics should be given to a patient in that event • staff failing to ensure an initial urine sample was tested correctly • her mother’s doctors resisting her requests for her mother to receive antibiotic treatment specific to UTI’s until 10 August (when her confusion increased again) • her mother’s death certificate citing the cause of death to be a UTI.

21. In its responses, the Trust says that Miss Y did not show any clinical signs of having a UTI when she was admitted to hospital, and this remained the case throughout her stay. It says she did have a chest infection, and she was given antibiotics to treat this initially.

22. The Trust accepts that an initial urine sample was not tested due to an error labelling the pot. It apologises for this, reassures Mrs X that later samples were taken and tested, and her mother’s care was not impacted by this mistake. It says it did not initially give antibiotics for a UTI as guidance does not recommend this unless the patient has physical symptoms associated with a UTI. It says Miss Y did not have any symptoms of a UTI.

23. The Trust states that this situation was kept under review, and advice obtained from a microbiologist. On advice from the microbiologist, Miss Y was given a one-off dose of an antibiotic effective in treating UTI’s on 10 August. This was a precautionary measure as she was still not symptomatic of a UTI, but she still had signs of inflammation despite having been on treatment for her chest infection for several days. It adds that, in addition to this, her regular antibiotics were also changed to a type which would be effective at treating both chest and urinary infections and the course extended for another five days.

24. The Trust says these continued to be given to Miss Y after her move to the Recovery Hub. We note the Trust outlines events following this leading to her death, but it does not comment on what may have led to this.

25. These two accounts differ significantly. Mrs X cites advice from the NHS website which she says shows confusion is one of the symptoms of a UTI. She says that, as her mother was suffering from confusion, she should have received antibiotics to treat this much sooner. She says an untreated UTI caused her mother’s death and that this could have been avoided with swifter action. We can understand how discovering the initial urine sample had been mismanaged and later seeing UTI mentioned on her mother’s death certificate must have been very distressing and worrying for her.

26. To help us understand events more clearly, we asked our adviser if they could provide any additional insight based on the evidence in Miss Y’s medical records. Our adviser explained the following:

27. Miss Y’s death certificate identifies three contributory factors to her death. These are UTI, cerebrovascular disease, and left ventricular systolic dysfunction. While the way the certificate is written suggests UTI as a primary cause, our adviser explained this is not necessarily definitive.

28. A death certificate is required to list possible contributing factors to a death, which it does. It will have been based on a ‘to the best of my knowledge’ view of the doctor certifying the death at that time, based on a limited knowledge of the patient.

29. While it is understandable that Mrs X would have accepted this as proof that her mother’s death was an uncontrolled UTI, our adviser explained that a detailed examination of her mother’s medical records indicates this may not be the case. They provide the following review of the clinical evidence to explain.

30. Of these three contributing conditions, only one condition is consistent with causing events leading up to Miss Y’s death. This was notable in that she showed no significant physical deterioration, only a cognitive decline. Following her loss of consciousness, she continued for some time to be physically stable. This suggests the underlying cause of this change was not physical strain on the body (due to for example heart failure or serious life-threatening infection).

31. Left ventricular systolic dysfunction is a problem with the heart. If this was the key factor in Miss Y’s death there would have been some clinical evidence of changes associated with heart failure. There is an absence of any clinical signs to suggest anything like this happened before the cognitive deterioration. No cardiac event occurred for some time after Miss Y became unresponsive and never regained consciousness.

32. UTI’s can be associated with a patient developing confusion, but usually only as a result of extreme strain being placed on the body due to fighting a system wide infection, for example if the patient develops sepsis. There is an absence of any evidence to suggest an infection of this severity. Our adviser said that, at worst, Miss Y may have been suffering a mild lingering infection of some kind. This would not be significant enough to have an adverse effect on a patient’s cognitive functioning, or cause death directly.

33. Our adviser explained that the NHS guidance cited by Mrs X mentions confusion in this context. Confusion is not a direct symptom of a UTI but a consequence of a person having a very serious infection causing physical strain on their bodily functions. It is mentioned in this NHS advice to the public in the context of vulnerable patients, for example those with dementia who may not be able to communicate suffering other symptoms.

34. We recognise that this is a document written in lay terms. It is intended as a prompt to seek medical advice from a GP or 111 services so professional investigations can be made into the cause of any confusion. Confusion can be caused by many underlying conditions, not just UTI’s. A GP or 111 could then refer on to hospital if there is sufficient concern.

35. As it happened Miss Y ended up in hospital due to suffering falls and injuring her head, and so received much more thorough clinical assessment and investigations than a GP or 111 could provide. Our adviser explained that, following those investigations, there is an absence of any clinical signs associated with such serious infections at any point in Miss Y’s care.

36. There is evidence to support Miss Y having had a mild chest infection, which appeared to clear with antibiotic treatment and then return later. She had developed shortness of breath prior to her admission. Initial examinations revealed noises associated with congestion in the lungs which improved but then returned later in her admission. This was sufficient to make a diagnosis of a chest infection. While there is enough evidence to be reasonably confident there was a chest infection, she was treated with antibiotics for this, and at no point did her clinical presentation indicate a serious infection took hold.

37. There is little evidence to support Miss Y having a UTI. She presented with none of the primary symptoms associated with UTI’s, which stem from the body fighting infection and bacteria irritating the urinary tract and bladder. These would include changes in appearance of urine, and the frequency in urge to urinate, as well as more general symptoms of the body fighting infection such as a high temperature.

38. There are two other blood test details which may provide some useful information on Miss Y’s general condition. Her C-Reactive Protein (CRP) level was noted to be raised. This is a blood marker which indicates some inflammation in the body. However, there are many things which can cause inflammation and a raised CRP level. This is not specific enough to link to the presence of an infection in the urinary tract.

39. Miss Y did have one clinical sign specific to the presence of some form of infection. Her white blood cell count was initially well within normal range upon admission, but by 10 August this had raised to just above the normal range. This indicates an immune response consistent with the presence of a minor infection of some form. This could have been a reaction to the established chest infection so, again, this is not specific enough to have been definitively a reaction to a UTI.

40. Our adviser said that the evidence allows them to conclude, with a reasonable degree of confidence, that the underlying cause of Miss Y’s confusion was unrelated to an infection. While they could not rule out the presence of any lingering infection entirely, they noted that she had been receiving antibiotic treatment for both chest and UTIs for some time before her final deterioration happened. This would have been ample time for antibiotic treatment to have an effect. Her level of confusion appears to have continued to have got worse, despite her physical condition improving enough for discharge to the Recovery Hub and remaining stable for some time after that move.

41. This leaves the third factor noted on the death certificate, of cerebrovascular disease, as a possible cause of confusion and later death. Our adviser also noted some relevant risk factors which made Miss Y more at risk of developing confusion and delirium.

42. NICE CG103 guidance is relevant here. In patients presenting with confusion, it requires consideration of any risk factors. Our adviser confirmed all the relevant risk factors were considered and documented on the medical records in line with CG103, which is what we would expect to happen.

43. The Trust followed this guidance correctly. We are able to see that Miss Y had an established chest infection, pain, she was on nine medications, and she had some metabolic factors associated with her frail health (such sodium/potassium levels etc.) which could also have made her more at risk of developing confusion.

44. She was also relatively young for admission to hospital due to having multiple comorbidities including a history of stroke, heart disease, a Rockwood frailty score of 6-7 (moderate to severe frailty). A CT head scan upon admission to check for head injuries also shows changes consistent with the onset of vascular dementia. Most of these factors indicate a higher risk of Mrs S suffering confusion due to causes other than infection.

45. Of the three factors listed on the death certificate, our adviser felt cerebrovascular disease is the most likely cause to account for a patient becoming unresponsive while their physical observations remain stable. They said it seems unlikely that an infection was the primary cause of death as there is no physiological evidence indicating Miss Y suffered an infection serious enough to cause that level of physical strain.

46. Similarly, there is no indication of a cardiac event until sometime after Miss Y became unresponsive. When her consciousness levels deteriorated sharply several days after her move to rehab, her physical condition remained unchanged and stable for a time.

47. Based on the above consideration of the available clinical evidence, our adviser felt they could conclude, on balance of probability, it is more likely that her final deterioration and death was due to progression of her Cerebrovascular Disease than any UTI. In simple terms this means Miss Y may have suffered some form of neurological changes in her brain which led to her becoming increasingly confused and eventually led to some form of stroke related event around the time of her becoming unresponsive on 17 August.

48. We took this into consideration when looking at the specific concerns Mrs X has raised in relation to UTIs and the potential impact of these.

Failure to obtain and test a urine sample upon admission or respond to positive test results correctly 49. As detailed in the Trust responses to this complaint, it accepted that there was a failing on this point. A staff member had not labelled the urine sample obtained from Miss Y on 30 July and the lab rejected this for testing. This was noted when her medical notes were reviewed on the evening of 4 August and another sample sent off for testing and initial results were made available to the ward the next day.

50. We therefore can see there was a five-day delay in getting a UTI test result due to this failing. We see Mrs X’s concerns were justified and we understand why she would want this looking into independently. Reassuringly, the analysis set out elsewhere in this report outlines a lack of any clinical consequences from this delay as, another sample was tested within a few days, and there is no evidence of Miss Y suffering from a UTI of any significance. The impact is therefore restricted to the concern this error caused to Mrs X from discovering the error.

51. The Trust has apologised and provided explanations and reassurances to Mrs X that there was no harm caused to her mother from this error. Our view is that the Trust has done enough to put this failing right already.

Not being listened to when raising concerns about the cause of confusion being a UTI initially and this returning and worsening from 10 August 52. While it was not tested due to an error, the obtaining of a urine sample on 30 July does show evidence that the Trust considered the possibility of a UTI at an early point in Miss Y’s admission. Another two samples were obtained for testing on 4 and 6 August. The medical records provide ample evidence of doctors looking for evidence to confirm or rule out her suffering from a UTI.

53. These did not provide evidence of Miss Y suffering a UTI. Consideration of possible causes for her confusion did, however, reveal a number of factors unrelated to UTI’s which made her more at risk of developing confusion.

54. We did not see evidence of Mrs X’s concerns not being listened to as the records show thorough investigations into both the possibility of a UTI, and the source of Miss Y’s confusion prior to 10 August. Reassuringly, these investigations indicate little likelihood of a UTI and other more likely underlying factors to account for her confusion.

Wrongly discounting UTI as a cause for deterioration and not providing treatment until it was too late to prevent serious harm 55. As explained above Mrs X says the Trust wrongly discounted UTI as a factor in her mother’s deterioration. We have established that investigations to identify if there was a UTI were completed and there was little to suggest this was the case by 10 August when her levels of confusion began to increase again.

56. The initial urine test taken on 4 August result isolated Escherichia Coli, a common bacteria found in the bowel. Our adviser explained that this was present at such a low level that it could have been simple contamination from the bottom area when obtaining a sample, due to people’s anatomy. This, and the complete absence of any symptoms associated with irritation of the urinary tract due to bacterial growth, indicates that there was, at worst, a possibility of a very mild presence of bacteria in Miss Y’s urinary tract.

57. An additional urine sample obtained on 6 August isolated another common bacteria found in the bowel, Enterococcus Faecalis. No trace of the earlier Escherichia Coli was found. Our adviser confirmed that this also was a low level for detection, which would not prompt antibiotic use in the absence of specific symptoms in the urinary tract. The Trust did not prescribe antibiotics in response to either of these results.

58. Our adviser confirmed this was in line with established professional guidance. NICE NG109 says: ‘Managing asymptomatic bacteriuria 1.2.1 .. Be aware that asymptomatic bacteriuria: • is significant levels of bacteria (greater than 105 colony forming units/ml) in the urine with no symptoms of UTI • is not routinely screened for, or treated, in women who are not pregnant, men, young people and children’

59. In lay terms this means when trace levels of bacteria are detected in urine, but there are no symptoms specific to a UTI, it is not recommended to treat with antibiotics unless the patient is a pregnant woman. As explained earlier in this report, Miss Y did not have symptoms specific to a UTI (confusion is not specific to a UTI as it can be due to many causes and usually only associated with very severe infections). The Trust did what the guidance recommends, which is not to respond to the results of the urine sample tests by prescribing antibiotics for treating UTI’s.

60. Our adviser explained that this guidance is drawn from a broad consensus approach across a variety of sources and research. This is based on findings showing such low levels of bacteria can often resolve through the body’s natural ability to clear them without any medical intervention (for example through flushing out via urination, or the actions of the immune system or beneficial bacteria).

61. The use of antibiotics in such cases can carry more risk than benefit. Antibiotics can clear bacteria in the short term but also cause side effects such as diarrhoea and hinder the action of body’s natural defences. These unwanted side effects can lead to higher risks of repeat and chronic infections.

62. The Trust did start to prescribe antibiotics to treat UTI’s from 10 August based on CRP markers in Miss Y’s blood remaining elevated. This was not required by guidance and there was no new clinical information which would require antibiotics under guidance. Our adviser said that, while antibiotics for a UTI were started from this point, her presentation was not that of a person suffering from a UTI of clinical significance and this did not change over time.

63. There was still little evidence to indicate a significant infection when this decision was made as inflammation markers in the blood are not evidence specific to an infection. As such, when antibiotics were given on 10 August our adviser said this could be considered for borderline preventative use, to reduce the risk of a symptomatic UTI developing, rather than a late intervention. Mrs X’s concerns about the risk of UTI’s may have also contributed to this decision being made, since there was not a strong clinical case for needing antibiotics.

64. The evidence shows a symptomatic UTI did not arise at any point after 10 August, so this appears to have been a not unreasonable precautionary measure to take. As Miss Y did not show any clinical signs of being significantly affected by a UTI at any point our view is it was not unreasonable to discount this as a cause of her deterioration.

65. There is little to suggest antibiotic treatment was not effective from the point of it being started on 10 August either, as Miss Y’s physical state improved enough to be discharged to the Recovery Hub and remained relatively stable after, even past the point she became unresponsive nearly a week later.

66. Overall, we cannot completely rule out the possibility that Miss Y may have had a mild UTI at some point. On balance of probability, we can say with a reasonable degree of confidence that, if she did have one, it was not serious enough to have been the cause of her confusion, or later deterioration.

67. It is understandable how Mrs X came to that conclusion based on the information she had available. Following careful consideration of the clinical information available to us, our view is that Miss Y’s confusion was more likely than not to be linked to the onset of dementia, and her later loss of consciousness and death potentially due to suffering some form of stroke.

68. Earlier provision of UTI antibiotics would not have prevented a stroke, or have allowed the Trust to anticipate it happening. We must conclude that there was no way of changing the outcome for Miss Y, even if the approach to UTI risks had been different. We hope Mrs X may take some comfort from this.

1. We found a minor failing in that a urine sample was not tested initially. This does not appear to have led to any clinical harm as the evidence does not indicate any serious infection, either from the urinary tract or other source, happened at any point. We have not found evidence of any other failing and care appears to have been provided in line with all the relevant guidance and established good medical practice.

2. In light of the lack of impact from the error with the initial urine sample, beyond the concern caused to Mrs X, we consider the explanations and apologies provided by the Trust to have been enough to have put this right already. We therefore decided to not uphold the complaint.

3. We can appreciate why Mrs X remained concerned that not acting sooner to treat a urinary tract infection contributed to her mother’s death. This is understandable, particularly in light of this being mentioned on her death certificate. We hope that our careful examination of the clinical evidence provides some reassurance that this was not likely to have been the case and the Trust did provide care of the appropriate standard.