Follow up CT scan
25. Mrs F says following her son’s shunt revision surgery on 9 May 2020, the Trust did not perform a post operative CT scan to make sure it was in the right place.
26. Mrs F feels had this CT scan been done, it would have seen his shunt was not in the correct place, and intervention could have been done sooner. She feels that this would have avoided some of the pain and suffering Mr F experienced before his next shunt revision surgery on 2 July 2020.
27. Mrs F explained that Mr F attended hospital in June 2020 as he was worried about how his shunt was healing. She described that there was blood at the sight of his shunt. Mr F was examined and discharged on this occasion.
28. Mrs F told us that in July 2020 Mr F was taken to hospital by ambulance as he was becoming increasingly unwell and was unable to walk. Mrs F told us that when he was examined at the hospital it was found that the tubes of his shunt were now “hanging out of his head”.
29. At the hospital it was identified that Mr F’s shunt was not in the correct place and Mr F was transferred to the Trust where a further shunt revision surgery was performed. We recognise that the period between May 2020 until his shunt revision surgery in July 2020 will have been distressing and painful for Mr F.
30. The GMC Guidance says that ‘if you assess, diagnose or treat patients, you must promptly provide or arrange suitable advice, investigations or treatment where necessary’. It also explains that medical professionals should record information about decisions made, actions agreed and when/ whether decisions should be reviewed.
31. Our adviser explained that there is no specific clinical guidance that outlines if a post operative CT scan should be done following shunt revision surgery. However, our adviser said that this is normally a standard post operative practice to ensure that the shunt had been placed correctly.
32. Our adviser further explained that if the standard practice of conducting a post operative CT is not followed, it would be expected that a reason for this should be offered and documented. This was not done in Mr F’s case.
33. In line with the GMC guidance, we consider the Trust should have conducted a CT scan following Mr F’s surgery as this was a necessary investigation to check whether the shunt had been placed correctly. Or, it should have recorded a rationale as to why it did not perform a post operative CT scan. The Trust did not do either of these and we consider this to be a failing.
34. Mrs F says that the impact of Mr F not having a CT scan following his May 2020 shunt revision surgery is that there was a delay in identifying that his shunt was not in the correct place.
35. Mrs F explained that due to this delay, Mr F experienced two months of pain and distress, before it was identified that a shunt revision surgery was needed in July 2020.
36. The NHS website on hydrocephalus identifies a number of symptoms that may occur if a patient is experiencing a shunt malfunction. These include headaches, blurry vision, difficulty walking, nausea, and confusion amongst other symptoms. It is noted in Mr F records that he experienced these symptoms in the period between May and July 2020.
37. We have found that had the Trust performed a post operative CT scan on Mr F, it would have identified that his shunt was not in the right place. This could have led to the incorrectly placed shunt being addressed sooner with corrective surgery.
38. This would have avoided the pain, distress, and symptoms of nausea and confusion that Mr F experienced for around two months before his further shunt revision surgery on 2 July 2020.
Communication with family
39. Mrs F says she did not feel her or her family, were consulted enough about her son’s discharge during his admission in August. She says she told Trust staff she did not want her son discharged, but they did not listen.
40. It is recorded in Mr F’s medical records that Mrs F did not agree he should be discharged. It is also recorded Mrs F was concerned about Mr F’s current condition.
41. The GMC guidance explains ‘doctors have a duty to be considerate to those close to their patient, and to be sensitive and responsive in giving them information and support, while respecting the patient’s right to confidentiality’.
42. The records indicate Mr F was happy for Mrs F to be informed about and included in his care.
43. In Mr F’s records we can see that the Trust first spoke to Mrs F on the phone on 21 August 2020. In this call Mrs F explained that she felt that Mr F was below his normal baseline however she recognised that after Mr F’s last shunt revision surgery it did take him a few weeks to return back to ‘normal’.
44. The records show that Mrs F then spoke to the Trust twice on 22 August 2020 and on both occasions she explained that she was not happy with the plan for Mr F to be discharged, and asked them to speak to his regular consultant Dr B.
45. In the second call of the day the call note outlines that Mrs F ‘wanted more details and answers to questions that I cannot explain.’ The call note then says that the call was ended as Mrs F was not satisfied with the answers that were given. Mrs F told us that the call was ended abruptly and that the Trust told her that it had made its decision, and that Mr F would be being discharged.
46. Mrs F was then contacted by the Trust again on 23 August 2020 shortly before Mr F’s discharge. It told her that it did not feel like Mr F was showing any indications of a blocked shunt and that the occupational therapy assessment was fine, as he could walk without mobility aids.
47. It then explained that the infection risk due to coronavirus was high, and therefore it felt that Mr F was better off being at home rather than as an inpatient at the Trust. Mrs F told us that she felt that she did not feel like she was listened to. We understand that this will have been extremely frustrating for Mrs F, especially as she had such a good understanding of Mr F’s conditions and the way they impact him.
48. We recognise that although Mr F was able to walk without mobility aids, the occupational therapists assessment did voice other significant concerns about Mr F’s cognitive state at this time that the Trust did not reference in its phone call with Mr F.
49. The Trust did offer Mrs F explanations as to why Mr F was being discharged. Although we recognise that she disagreed with the decision to discharge him, the Trust did make attempts to ensure that she had an understanding as to why the decision to discharge had been made. It therefore was acting in line with the GMC guidance.
50. We recognise that Mrs F raised concerns about Mr F’s condition to staff on multiple occasions on the days leading up to his discharge. We consider that the Trust did appropriately discuss its decision to discharge Mr F with Mrs F and make attempts to ensure it had explained to her why it had made that decision. This is in line with the GMC guidance. We therefore do not consider this to be a failing.
The discharge of Mr F on 23 August 2020
51. Mrs F complains that her son was incorrectly discharged on 23 August 2020. She does not feel that the Trust thoroughly considered her son’s clinical history or diagnosis and missed ‘risk factors’ with her son’s symptoms prior to discharge.
52. She complains that a junior doctor discharged him without sufficient levels of supervision and without seeking input or advice from a senior consultant. She also complains that the doctors did not listen to her son’s occupational therapist when they said he should not be discharged or investigate the results of her son’s CT scan and lumbar puncture prior to discharge.
53. Mr F was admitted to the Trust on 19 August 2020 with headaches and nausea. The records show that Mr F’s existing conditions were clearly recorded within his records. On the same day of his admission Mr F had a CT scan and lumbar puncture. This showed that he had enlarged ventricles. It is noted that his CT scan looked similar to his last CT scan taken before his previous shunt revision surgery, when his shunt was blocked.
54. On the morning of 20 August 2020 Mr F was reviewed by a nurse. His notes indicate that he was well in himself however needed some assistance with personal care. He was also seen by a physiotherapist and ophthalmologist on the same day who reported that they had no concerns about Mr F.
55. On 21 August 2020 it is recorded that Mr F had begun vomiting. It is noted that he had started refusing to eat and drink and was beginning to become drowsy. Following this, the doctors decided that Mr F was showing no signs of a blocked shunt and that he should be discharged.
56. Following the decision that Mr F should be discharged an occupational therapist came to review him. He had a functional assessment with the occupational therapist. In his records the occupational therapist noted he was ‘drowsy, difficult to engage in conversation, distracted, vague, unsteady on his feet and unaware of others around him’.
57. The occupational therapist explained Mr F was ‘off his baseline mobility, cognition and function’. They reported this to the team in charge of his care and said he should be kept on the ward.
58. The Trust spoke to Mrs F on 21 August 2020 who expressed her concerns that she felt her son was below his normal baseline.
59. The records show that on 21 August 2020 the junior doctor spoke to the neurosurgical consultant who was in charge of Mr F’s care during this admission. The records show the consultant was happy for Mr F to be discharged.
60. The records show that Mrs F spoke to the Trust twice on 22 August 2020 on both occasions she explained that she was not happy with the plan for Mr F to be discharged.
61. The records also show that a nurse reviewing Mr F on 23 August 2020 also raised a concern, as they noted that Mr F had been vomiting and hiccupping that morning. The records show that the nurse alerted the junior doctor who was in charge at that time, and asked them to review Mr F, however they did not do so and told the nurse that Mr F was safe to be discharged home.
62. The nurse also told the nurse in charge about their views that Mr F should not be discharged and that the junior doctor would not come to review Mr F.
63. Mr F was discharged following this on 23 August 2020. There is no evidence to show the Trust asked for, or received, input from his regular consultant, Dr B during this admission. There is also no evidence that a more senior doctor examined Mr F during this admission.
64. On 24 August 2020, the occupational therapist called Mrs F to follow up on Mr F’s condition. In their notes they outlined he was discharged on 23 August 2020 despite their concerns. They explain that when they contacted Mrs F, she reiterated her concerns about Mr F’s condition to them.
65. The GMC guidance says when providing clinical care doctors must adequately assess a patient’s condition, taking account of their history.
66. The records show that Mr F’s existing conditions were appropriately and clearly recorded within his records in line with the GMC guidance. The evidence in the records suggests the medical team were aware of Mr F’s existing conditions and medical history when they made the decision to discharge him.
67. It is documented in the records that this decision was made on the basis that it did not feel that he was presenting with a shunt malfunction at that time.
68. GMC guidance explain clinicians should ‘promptly provide or arrange suitable advice, investigations or treatment where necessary’. Additionally, it says clinicians must ‘work collaboratively with colleagues, respecting their skills and contributions’.
69. Our adviser explained that when a CT scan shows the patient has enlarged ventricles, you should arrange a lumbar puncture. This is a ‘suitable investigation’ to explore this abnormality.
70. The records show that in line with the GMC guidance, Trust staff correctly arranged a lumbar puncture. This showed Mr F had ‘moderately high opening pressure’. Our adviser explained this can be a sign of a shunt malfunction, but it does not definitely mean the shunt is malfunctioning or blocked. In Mr F’s case, the results of his CT scan and lumbar puncture were noted to be similar to his pre operative results previously, when he did have a blocked shunt.
71. Our adviser explained that as Mr F’s test results were inconclusive, Trust staff should have arranged further intracranial pressure monitoring. This is the ‘suitable investigation’ to determine whether the patient has a blocked shunt. There is no indication in the records to show Trust staff arranged this.
72. It is clear from the notes that the occupational therapist did not agree with the decision to discharge. In line with GMC guidance, we would expect the team in charge of his care to ‘respect their skills and contribution’ and consider this feedback as part of the discharge assessment. We have seen no evidence to show this happened.
73. The NHS webpage for hydrocephalus outlines its symptoms. These include sleepiness, changes in your mental state such as confusion, difficulty walking, vomiting and headaches.
74. Our adviser explained that the team in charge of Mr F’s care at that time should have given more weight to the view of the occupational therapist and the nurse. There was a lack of consideration given to the occupational therapist’s report, which showed Mr F was suffering from multiple symptoms that indicated hydrocephalus that needed further review.
75. We have also seen that the doctors dismissed the view of the nurse that Mr F’s condition needed reviewing and refused to review him again before discharge. This is not in line with the GMC guidance.
76. The GMC guidance also says clinicians should ‘consult with colleagues where appropriate’ to provide good clinical care. In this case, our adviser confirmed Dr B had significant knowledge of Mr F’s clinical history, symptoms and treatment plan. They were his named consultant. Given the complexity of his case, it would have been clinically appropriate to involve them in discussions about his discharge.
77. The records show the junior doctor did discuss the case with a consultant before deciding to discharge Mr F on 23 August. However, as Mr F’s case was complex, to provide ‘good clinical care’ we consider the doctors should have discussed Mr F’s symptoms with Dr B before making the decision to discharge him.
78. Dr B had extensive knowledge about his clinical history and in line with the GMC guidance was the most ‘appropriate’ colleague to be involved in the decision to discharge him.
79. In its complaint response, the Trust confirmed that after reviewing the records of this admission, Dr B said Mr F should not have been discharged. This suggests that if the doctors had contacted Dr B during this admission it seems likely they would have advised against the discharge.
80. We conclude that taking into account the results of Mr F’s CT scan, lumbar puncture, and the view of the occupational therapist and nurse, Mr F was showing multiple warning signs for hydrocephalus. Hydrocephalus is a common sign of a blocked or malfunctioning shunt. Therefore, we consider it is likely that Mr F had a blocked shunt during this admission.
81. We have found that in line with the GMC guidance, the Trust should have arranged further intracranial pressure monitoring to determine whether Mr F had a blocked shunt. It did not do this, and we consider this to be a failing.
82. Therefore, we have found that the Trust should not have discharged Mr F on 23 August 2020.
Impact
83. Mrs F says if the Trust had not discharged Mr F on 23 August 2020, he would not have died.
84. Mr F’s autopsy report lists his cause of death as hydrocephalus. Our adviser explained the hydrocephalus was caused by a blocked shunt.
85. The NHS guidelines for hydrocephalus outlines ‘a shunt blockage… can lead to a build-up of excess fluid in the brain, which can cause brain damage. This will cause the symptoms of hydrocephalus.’ It further states that ‘emergency surgery will be needed to replace the malfunctioning shunt.’
86. Our adviser explained that deterioration in patients with hydrocephalus can occur either quickly or slowly depending on the severity of the blockage in the shunt. As Mr F did not have a sudden onset of symptoms, it is likely that he had a slow deterioration. As he was discharged with a blocked shunt, Mr F most likely experienced a continued slow decline due to increasing hydrocephalus due to a shunt malfunction from his discharge in August until his death in September.
87. We discussed with our adviser what would have happened had Mr F not been discharged. Our adviser explained to us that he would have been kept as an inpatient at the Trust for a period of either formal intracranial pressure monitoring or at least further observation to look for any further cognitive decline.
88. Our adviser continued that had Mr F been monitored at the Trust, a further physical and cognitive decline, and, or an increase of intercranial pressure would have been noted prior to his death. In a hospital setting, this would have been noted and addressed urgently, and in line with the NHS guidelines above, Mr F would have had shunt revision surgery.
89. The shunt surgery study researched the post-surgical complications of 227 adults who had shunt revision surgery. The findings of the study outline that fatal complications only occurred in 8.2% of cases.
90. Based on this, we consider, if Mr F had undergone shunt revision surgery in August, it is more likely than not that he would have survived the surgery.
91. Our adviser explained that shunt blockages are relatively common. Mr F last had shunt revision surgery on 2 July, and it had become blocked again by 19 August. We cannot conclude that Mr F’s shunt would not have become blocked again even after surgery. Consequently, we cannot conclude that Mr F would not have suffered further complications if the Trust had not discharged him on 23 August.
92. After Mr F was inappropriately discharged, he had a period of time at home when he was deteriorating further. Mrs F has told us that she was concerned about her son during this period and asked him if he felt he needed to go back to hospital as she knew something was not right.
93. Mr F was reluctant to go back as he felt that the Trust has dismissed his symptoms. We appreciate why Mr F was reluctant to seek any further medical help, as he felt there was no point due to his previous poor experience. We appreciate that the Trust’s poor care during his previous admission caused him to feel this way.
94. As there was over three weeks from the inappropriate discharge to Mr F’s sad death, and as he continued to decline at home, it does appear there was a missed opportunity for Mr F to have sought a second opinion, via his GP, this Trust, or a different Trust during this time. As such, we cannot say that the decision to discharge him on 23 August solely caused Mr F’s death.
95. However, this does not in any way detract from the fact that we conclude that the Trust has made significant failings in its decision to discharge Mr F when all evidence available to it indicated that he had a blocked shunt at that time. As a result of this failing, Mr F lost the opportunity for a better clinical outcome which may have prevented his death. Mrs F has also been left not knowing whether her son could have survived if better care and treatment had been provided which is a significant injustice in itself.
Complaint handling
96. Mrs F explained that the Trust’s complaints procedure has been heavily protracted and that its lack of effort to provide her with a timely response has caused further and ongoing grief and distress to her and her family.
97. Mrs F told us that Mr F’s Stepdad and grandad sadly died before there had been any response provided by the Trust. Mrs F told us that Mr F’s Stepdad told her to ‘keep fighting’ for Mr F. She explained that the Trust’s failure to provide any prompt response meant they were left without any answers or closure on the circumstances surrounding Mr F’s death.
98. Mrs F also complains that when the Trust initially responded to her complaint on 9 August 2023 it explained that it was raising Mr F’s death as a ‘serious incident’. Mrs F feels that this should have been raised at the time of Mr F’s death rather than 35 months after.
99. Mrs F made her initial complaint to the Trust on 18 February 2022. On the 13 April 2022 it acknowledged receipt of her complaint.
100. In September 2022 Mrs F’s advocate contacted us on her behalf as she still had not heard from the Trust. Mrs F’s initial complaint with us was closed as she had not completed the resolution process with the Trust.
101. In October 2022 Mrs F had a virtual meeting with the complaints manager at the Trust. In it she discussed her complaint and the length of time that the complaints process had taken so far.
102. In February 2023 Mrs F’s advocate contacted us again as Mrs F still had not had a response from the Trust. We contacted the Trust and chased it for a response. In March 2023 we had still not heard from the Trust and so chased it for a response again.
103. In April 2023 both us and Mrs F’s advocate chased the Trust for its response. It did not respond. Again, in May 2023 both us and Mrs F’s advocate chased the Trust for its response. In May 2023 the Trust responded and explained that the response was not yet finished.
104. In June 2023 Mrs F’s advocate chased the Trust again. Again, the Trust responded and said that the response was not yet finished.
105. On 5 July 2023 Mrs F contacted the Trust to tell it of her dissatisfaction with the complaints process so far. On 17 July 2023 the Trust responded to her email and offered her a financial remedy of £500 in recognition of the failings in its complaint’s procedure. Mrs F declined this offer of financial remedy.
106. On 9 August 2023 the Trust provided its initial response to Mrs F’s complaint. This was 18 months after Mrs F submitted her complaint.
107. Mrs F sent a follow up complaint to the Trust on 11 September 2023. In October 2023 we chased the Trust for a response. It did not respond, and we therefore chased it again in November 2023. Mrs F’s advocate also chased the Trust for a further response on 25 October 2023.
108. On 8 November 2023 we attempted to call the complaints manager at the Trust twice to ask when Mrs F can expect a further complaint response. Despite leaving two voicemail messages asking for a call back, we did not hear back from the Trust.
109. On 20 November 2023 Mrs F had still not heard from the Trust and we therefore sent an escalation letter asking for a response by 7 December 2023. On 21 November 2023 Mrs F’s advocate also emailed the Trust asking for a response.
110. On 12 December 2023 Mrs F had still not heard back from the Trust. We therefore made the decision to proceed with the investigation without any further response from the Trust.
111. The Trust have still not replied to Mrs F’s follow up complaint, despite intervention from us. This is currently 26 months after Mrs F sent her second complaint letter.
112. The Regulations state that organisations should provide a complaint response within six months commencing on the day on which the complaint was received. If it is unable to do this then it should notify the complainant and provide a response as reasonably practical thereafter.
113. Our NHS complaint standards say that organisations should ‘give open and honest answers as quickly as possible’.
114. The Trust’s complaints process has taken 46 months so far. This is despite PHSO interventions on multiple occasions. This is not in line with the NHS complaint standards or the Regulations.
115. The NHS complaint standards also say to ‘make sure service users who make complaints, and colleagues directly involved in the issues, have their say and are kept updated when they carry out this work’.
116. Both us and Mrs F’s advocate chased the Trust for a response on multiple occasions and did not receive responses.
117. We have found that the Trust did not act in line with the NHS complaint standards or the Regulations and there were unreasonable delays in it providing its responses. We are also of the view that it did not appropriately keep Mrs F, her advocate, or us updated on the status of her complaint. This amounts to a failing.
118. In the complaint response on 6 August 2023, the Trust explained it had raised a serious incident (SI) report into Mr F’s death. It has not told either us or Mrs F of any outcomes of it raising this.
119. Mrs F feels the Trust should have raised a serious incident (SI) report at the time of her son’s death. She explained the Trust’s failure to do this has caused further distress and confusion to herself and her family.
120. The NHS Serious Incident Framework says, ‘serious incidents must be declared internally as soon as possible, and immediate action must be taken to establish the facts, (and) ensure the safety of the patient’.
121. In Mr F’s case the SI was not raised until 35 months after his death. This is not in line with the framework.
122. We consider the Trust should have raised Mr F’s death as a SI shortly after his death. We recognise that the Trust’s failure to do this will have contributed to Mrs F and her family’s distress and added confusion when they found out about the Trusts failure to raise Mr F’s death as a SI in August 2023.
123. The impact of this is ongoing, as Mrs F and her family are still without an explanation as to why the SI was not raised sooner.
124. Mrs F explained that the protracted complaints procedure at the Trust and the Trust’s failure to declare Mr F’s death a SI until 35 months after, has caused further grief and distress to herself and her wider family, who have been left without an adequate explanation and closure into the circumstances surrounding Mr F’s death.
125. We consider that the Trust’s failings in its complaint handling will have led to further distress and grief to Mrs F and her family at an already difficult time when they were already grieving the death of Mr F. The family were left without any answers for 35 months which is a significant amount of time to be left wondering about the circumstances surrounding Mr F’s death, and why he received the treatment that he did.