Complaint about the County Durham Trust and the Sunderland Trust
Kidney stones
30. Mr E believes a specialist should have reviewed his mother sooner than 31 October and thinks the planned kidney stone procedures should have been done sooner. He thinks if it had been, his mother would not have needed emergency surgery.
31. We firstly considered what happened up to, and including, the review by the urologist on 1 November.
32. Following Mrs E’s admission to hospital B, a CT scan, which provides detailed images of inside the body, showed she had swelling of her left kidney. This was due to build-up of urine and abnormal dilation of the ureter (the tube which carries urine from kidney to bladder).
33. Doctors at hospital B contacted the hospital C (part of the Sunderland Trust). The urology Multi-Disciplinary Team (MDT) at hospital C discussed Mrs E on 22 October 2018.
34. They considered the CT scans and noted Mrs E was improving but was not particularly well. Hospital C planned to see Mrs E in its outpatient urology clinic when she was fit.
35. Doctors at hospital B arranged a further CT scan on 31 October and asked the consultant urologist to review Mrs E. The consultant urologist from hospital C reviewed Mrs E the following day.
36. They planned to do a ureteroscopy, a procedure to look for, and remove, kidney stones. He planned to add Mrs E to his waiting list for mid-November depending on pre-assessment, which is an assessment of general health and fitness for the operation and anaesthetic.
37. The relevant standard that applies to these events is GMC guidance, which says doctors should promptly provide, or arrange, suitable advice, investigations, or treatment where necessary.
38. We asked our urology adviser about the timing of the review by the urologists. He said there was nothing to indicate Mrs E needed more urgent investigations or review by the urologists.
39. The records show Mrs E was not experiencing symptoms of pain from the kidney stone. She was a frail patient whose clinical condition was improving. The MDT’s plan to allow Mrs E to improve before a urology review was in line with the GMC guidance.
40. At the urology review on 31 October, we can see the urologist did not place Mrs E on the standard waiting list for the extraction procedure. In planning the procedure for mid-November, the urologist gave the procedure some priority.
41. While we know Mrs E’s condition went on to deteriorate (as outlined later in this report), we have seen nothing to indicate that at this time Mrs E needed surgery more urgently.
42. Taking into account both the records, and the view of our adviser, it is our view that the timing of the review by the Sunderland Trust’s specialist, and the planned extraction procedure, was in line with GMC guidance to provide prompt treatment.
43. We then considered what took place after the review by the urologist, in relation to the timing of the pre-operative assessment.
44. We know it was the consultant’s plan to do the procedure in mid-November. There is evidence in the records that on 5 November Sunderland Trust said it planned the procedure for 15 November. However, they were considering the best way to have Mrs E pre-assessed before this.
45. The records show that in the two weeks after the urology review, there was discussion between staff at the Trusts about the planned procedure, as well as the arrangements for the pre-operative assessment.
46. Due to her frailty, it was essential Mrs E had careful pre-assessment before surgery.
47. There is some conflicting evidence about when the pre-operative assessment appointment was first scheduled. However, on 13 November, Sunderland Trust wrote to Mrs E inviting her for pre-assessment on 20 November.
48. We acknowledge Mr E’s concern and frustration that the pre-assessment did not take place sooner, and that the Trusts were ‘passing the buck’ about arranging this. We considered the timing of the pre-assessment appointment.
49. The records show that by 13 November, there had been no change in Mrs E’s clinical condition since the review by the urologist. Considering Mrs E’s clinical condition, we have seen nothing to indicate that at that stage she needed more a more urgent procedure.
50. By arranging the pre-assessment for 20 November, this meant the procedure would take place sometime after that, which was in line with the GMC guidance.
51. Mrs E did not attend the pre-assessment as planned, and we have considered the reasons for this.
52. The records show Mrs E’s temperature began to rise on 19 November, and the following day staff considered she was too unwell to travel to the pre-assessment.
53. We then considered what should have happened about the stent procedure once Mrs E developed this temperature.
54. The EAU guidelines say an obstructed kidney, with all signs of UTI, is a urological emergency. It says urgent treatment is often necessary to prevent further complications.
55. Mrs E was known to have a stone in her ureter. As outlined above, Mrs E’s temperature began to rise, and increased further, on 19 November. Mrs E also had foul smelling urine. The records show doctors diagnosed Mrs E with a UTI.
56. Mrs E had an obstructed kidney and a UTI. In line with the guidance, the doctors at the hospital should have immediately escalated Mrs E to the urology team at hospital C.
57. Instead, the records show doctors considered the UTI was caused by her catheter and started antibiotics.
58. It was not until the 22 November that doctors contacted the urology team at hospital C, who advised they should transfer Mrs E to hospital C as soon as possible.
59. This was not in line with EAU guidelines, which say this condition is a urological emergency, and is a failing by the County Durham Trust. We consider the impact of this in the next section.
60. We have not found any failing in the care provided by the Sunderland Trust.
Impact of the failing by County Durham Trust
61. If the County Durham Trust had acted in line with guidance, it would have referred Mrs E to the urology team at hospital C in the late evening of 19 November, when she showed signs of an infected obstructed kidney.
62. As Mrs E fit the criteria for a urological emergency, it is our view she would have been transferred to hospital C as soon as transport could be arranged. We think it is likely she would have had emergency surgery to put a stent in her ureter within a few hours of arrival, considering the timeframe that did occur once Mrs E was transferred.
63. Doctors at hospital B did not refer Mrs E to hospital C until the 22 November. Once that referral was made, Mrs E was transferred to hospital C within 90 minutes and had the emergency stent procedure.
64. If hospital B had transferred Mrs E when it should have done, she would have had surgery around three days earlier. We have considered the impact this delay had on Mrs E’s condition.
65. During those three days, Mrs E’s condition deteriorated, and she developed Acute Kidney Injury (AKI), which is where the kidneys suddenly stop working properly.
66. We know Mrs E’s condition was not as good as it had been on 19 November. Infection and organ failure, such as the AKI, places a major strain on the body. This meant Mrs E was less likely to recover from the surgery itself as she had fewer reserves.
67. Research shows that when a patient has an infected obstructed kidney, a delay of three days in treating this leads to a 29% increase in the risk of death. For the average patient, this is an increase from 4% to 5.4% risk.
68. However, our adviser said that factoring in Mrs E’s age and frailty, her individual risk of dying, in either situation, is likely to have been higher. Unfortunately, we cannot accurately calculate Mrs E’s individual risk.
69. Although we do not know Mrs E’s individual risk of dying before or after the delay, we do know that the delay increased the chance of her dying. The failing meant Mrs E was denied the best possible chance of survival.
70. This has understandably had an emotional impact on Mr E. Believing from the outset that his mother did not receive the correct care when her condition deteriorated caused distress to Mr E when he was already grieving for her.
71. Now knowing that the Trust’s failing reduced Mrs E’s chances of survival will cause Mr E and his family further distress. We do not underestimate the impact that will have on them.
72. The Trust has not acknowledged the failing or impact in its response to Mr E’s complaint. We have made recommendation later in the report for it to do so, and to take action to prevent a repeat of these events.
73. We have upheld the complaint that County Durham Trust delayed the kidney stone procedure.
Discharge arrangements
74. Mr E says the family wanted his mother to be discharged to a hospice. He says staff told them a referral would be made, but later found out it had not. He says by the time staff did refer her, there was no bed available for her. He says because of that, they had to care for his mother at home, which was distressing.
75. In its complaint response, the Trust said it received referral documentation from the family. It said the ward manager spoke to the hospice, who felt Mrs E did not meet the criteria for admission. It said the hospice had told the family a referral could be made but placement could not be confirmed until an assessment of needs was done.
76. We have first considered what should have happened in these circumstances.
77. There are no specific guidelines about referrals to a hospice. There are more general standards for nursing staff which are relevant.
78. The NMC Code says nurses should:
· listen to people and respond to their preferences · make sure that any treatment, assistance or care for which they are responsible is delivered without undue delay
79. The NICE Quality Standard says:
· people approaching the end of life and their families should be communicated with and offered information in an accessible and sensitive way in response to their needs and preferences.
80. We are aware there is no set process for how hospice referrals are made. This would depend on the individual hospice.
81. The hospice website says it accepts referrals by phone, followed by a completed referral form. It says it discusses referrals each day and prioritises them on the basis of need.
82. We then looked at what happened, taking account of what Mr E and the Trust told us, and the records.
83. On 7 December, there was a discussion between staff and Mrs E’s family. The family knew she was deteriorating and initially wanted her to go to a nursing home to be comfortable and receive palliative care. This is care that controls any pain and symptoms, making patients comfortable when their condition cannot be treated.
84. However, the records show the next day Mrs E’s daughter said she would prefer her mother to go to a hospice rather than a nursing home. Staff explained it may not be possible, saying she did not meet the criteria, as yet.
85. Mrs E’s daughter contacted the hospice on 9 December. They said it would need a referral from the ward staff. At some point between 9 and 11 December, Mrs E’s daughter forwarded the relevant forms to the Trust.
86. On 11 December, Mr E also said he preferred his mother to go to a hospice. The same day the ward manager spoke to the hospice, who said Mrs E did not meet the criteria for admission.
87. There is some evidence from Mr E that the ward manager said they would send the referral forms to the hospice immediately. It is clear from the records that the family believed staff had made a referral. It was only on 17 December, when speaking to the consultant, they discovered it had not been made.
88. At that point, the Trust completed the relevant forms and sent them to the hospice (and one other hospice). At that stage, Mrs E was placed on the waiting list, but unfortunately a place did not become available before she was discharged home on 22 December.
89. Taking all that into account, we think to act in line with the NMC guidance, the Trust should have completed the paperwork for the referral to the hospice on or around 11 December.
90. We appreciate the hospice had told the Trust it did not think Mrs E fitted its criteria. However, given the family’s strong preference for that hospice, staff should have made the referral so the hospice could consider it. Not doing so, was not in line with guidance and is a failing.
Impact of this failing
91. Mr E says that because the Trust did not make a hospice referral sooner, there was no hospice place for his mother. He says the family felt they had no option but to care for her at home.
92. It is clear from conversations with Mr E how difficult he and the family found this period. We also acknowledge how challenging and upsetting it was to care for Mrs E at home during her final days.
93. As set out above, staff sent the referral to the hospice on 17 December. This was a delay of approximately six days.
94. If staff had sent the referral on 11 December, we do not know if a suitable bed would have been available for Mrs E. We do not know what the result of the hospice’s assessment would have been.
95. When the hospice said, on 18 December, they would place Mrs E on the waiting list, the family could have looked at alternative options, such as a nursing home.
96. However, the records show that when the hospice did not have space for Mrs E, her daughter told staff their priority was still finding a hospice. She said, in the meantime, they preferred her to go home. Mrs E also said she wanted to go home.
97. For this reason, we do not think the Trust’s delay in referring Mrs E to the hospice meant the family had to care for Mrs E at home – other options could have been explored.
98. We acknowledge the decision to care at home for a dying relative is a difficult one to make and we do not seek to minimise how difficult this period was for the family.
99. In summary, we have found the Trust delayed referring Mrs E to a hospice. We do not know if this meant she missed out on a hospice placement. However, the delay caused Mrs E’s family frustration and distress at what was already a difficult time for them.
100. As such, we have partly upheld this part of the complaint.
Parkinsons’ clinic discharge
101. Mr E says the County Durham Trust should not have discharged his mother from the Parkinson’s Disease service in September 2017. He believes she should have had specialist care and reviews.
102. GMC guidance says doctors should refer a patient to another practitioner when this serves the patient’s needs.
103. The NICE Parkinson’s Disease guidance says:
· review a patient’s Parkinson’s Disease regularly, every six to 12 months · offer people with Parkinson’s Disease an accessible point of contact with specialist services, which could be provided by a Parkinson’s Disease nurse specialist.
104. As outlined at paragraph 27, the neurologist considered Mrs E’s problems were simply those of aging and they expressed some doubt about her Parkinson’s Disease diagnosis.
105. Our neurology adviser told us that the options available to the neurologist to ensure they met the NICE guidelines would be:
· remove the diagnosis of Parkinson’s Disease and say Mrs E had a combination of ageing and tremor which did not need further specialist review · accept she had elements of Parkinson’s Disease but did not need follow up and offer to field any queries via telephone/secretary · refer to the local Parkinson’s Disease service.
106. The neurologist did not do any of these things. They did not refer Mrs E to the Trust’s Parkinson’s Disease nursing service and did not offer to accept any queries from the family.
107. While the neurologist had doubts about Mrs E’s diagnosis, they did not remove the diagnosis. This means Mrs E had an ongoing diagnosis of Parkinson’s Disease. Therefore, in line with the NICE Parkinson’s Disease guidance, Mrs E should have had regular reviews and an accessible point of contact.
108. The referral to the neurologist was from the GP. Mrs E was not involved with any other Parkinson Disease specialists. It was the responsibility of the neurologist to make necessary arrangements for further review of her condition, and to arrange an accessible point of contact.
109. We do not suggest the neurologist should have reviewed Mrs E or been the point of contact. The guidance does not say who should do this.
110. The County Durham Trust told us the Movement Disorder Team (its Parkinson’s Disease service) relies on neurologists referring patients into the nursing team. It said patients have face to face reviews or are reviewed in their home by telephone.
111. The County Durham Trust clearly has a system for providing reviews and specialist contact for patients with Parkinson’s Disease. However, we have seen no evidence the Trust referred Mrs E to this service following her neurology review.
112. Not arranging further review of Mrs E’s Parkinson’s Disease or providing her with a contact in specialist services was contrary to NICE Parkinson’s Disease guidance, and the GMC guidance. This is a failing.
Impact of this failing
113. If the Trust had acted in line with guidance, it would have reviewed Mrs E’s Parkinson’s Disease by the middle of September 2018 (12 months after her previous appointment). Also, the family would have had a point of contact for any queries they had.
114. We can see a Parkinson’s Disease Nurse Specialist reviewed Mrs E on 10 October 2018, the day after her admission to hospital B. This means there was, fortunately, less than a one-month delay in the review of Parkinson’s Disease taking place.
115. When the Parkinson’s Disease nurse specialist reviewed Mrs E, there was little intervention needed and no changes to her medication.
116. In our view, this means a review a month earlier would likely not have reduced any symptoms or deteriorating mobility Mrs E was experiencing.
117. The failure to provide an accessible point of contact for Mrs E’s Parkinson’s Disease did not have an impact upon her condition. We hope that reassures Mr E and the family in terms of Mrs E’s condition.
118. Having said that, it is also our view that if Mrs E had an accessible point of contact for her Parkinson’s Disease, Mr E and the family would have felt more supported when Mrs E’s overall condition deteriorated. That they didn’t get this support was an impact of the Trust’s failing.
119. We have partly upheld this part of the complaint.