Care and treatment in the Emergency Department
18. Mrs B says P did not see a doctor in the emergency department until over four hours after he arrived there. The Trust says in its initial response to the complaint P was thought to have suspected sepsis due to suspected aspiration pneumonia. Although sepsis does not appear to have been a factor in P’s death, we took into account guidance relating to sepsis as this was the Trust’s initial concern on his arrival.
19. NHS England’s clinical streaming guidelines says patients should be triaged in emergency departments within 15 minutes and should then be seen by a decision-making clinician (usually an emergency doctor) within one hour.
20. NICE sepsis guidance sets out the circumstances when sepsis should be suspected and specifically states: • 1.1.3 pay particular attention to concerns expressed by the person and their family or carers, for example changes from usual behaviour • 1.1.4 assess people who might have sepsis with extra care if there is difficulty in taking their history, for example…people with communication difficulties (such as learning disabilities…) • 1.3.10 carry out a thorough clinical examination to look for sources of infection.
21. This means that concerns raised by P’s family and carers should have been considered, and extra care taken as P was unable to communicate with Trust staff, including providing a full clinical examination.
22. NICE sepsis guidance also says a patient is at high risk of severe illness or death from sepsis if they have suspected or confirmed infection and a National Early Warning Score (NEWS2) of 7 or above. NEWS2 is a tool that has been used in the NHS in England since 2012 to identify the severity of acute illness in patients. A NEWS2 score of 7 or above means the patient is at high risk of acute illness and requires an emergency assessment from a doctor. Section 1.13.2 says, for patients aged 16 or over who are at high risk of severe illness or death from sepsis: • arrange for a clinician with core competencies in the care of acutely ill patients (FY2 level or above) to urgently assess the person's condition and think about alternative diagnoses to sepsis • refer to the senior clinical decision maker as soon as possible.
23. NICE sepsis guidance 1.13.3 says people aged 16 or over who are at high risk of severe illness or death from sepsis should be given intravenous antibiotics (provided through a cannula in a vein) within one hour of calculating the person’s NEWS2 score on their initial assessment in the ED. Section 1.13.4 says they should also be given intravenous fluids within one hour of identifying they are at high risk of sepsis.
24. P arrived in the emergency department on 13 September 2019 at 2.10am. P’s NEWS2 score was recorded as 8 at 2.23am and had dropped to 7 when he saw the triage nurse at 2.51am, 41 minutes after his arrival and longer than the 15 minute guideline set out by NHS England.
25. P’s symptoms on arrival in the emergency department included breathing difficulties, pain (although he was unable to state where he felt pain), vomiting and constant burping. The triage nurse recorded that P was clammy, distressed and short of breath, needed oxygen, and had abnormal respiratory and heart rates, but he did not have a high temperature. The triage nurse recorded a red flag of suspected sepsis and arranged for sepsis blood tests to be taken and a chest X-ray. They recorded they had escalated P’s care to a doctor. These actions are broadly in line with the NICE sepsis guidance, although the observations charts on which NEWS2 scores are recorded do not record any escalations made to senior clinicians in relation to the high NEWS2 scores.
26. The high NEWS2 scores mean that P should have been considered at high risk of severe illness or death from the suspected sepsis. Arrangements should have been made for him to see a doctor urgently (within one hour), and intravenous antibiotics and fluids should have been provided to him within one hour of his initial NEWS2 score, which was calculated at 2.23am.
27. Intravenous antibiotics were given at 4:15am, almost two hours after his NEWS2 score of 8 showed he was at high risk of severe illness or death from sepsis. Even taking account that antibiotics would not have been requested until P had seen the triage nurse at 2.51am, antibiotics were not given until 83 minutes after this. In addition, intravenous fluids were not provided until 7:09am, five hours after P’s arrival in the emergency department.
28. This is not in line with NICE sepsis guidance, as both intravenous antibiotics and intravenous fluids should have been provided within one hour of P’s initial NEWS2 assessment. This means antibiotics and fluids should have been started by 3.23am. Overall, the evidence we have seen shows there was over an hour’s delay of starting antibiotics and almost four hours delay in starting fluids to treat P for suspected sepsis.
29. P was first seen by an emergency doctor at 7.20am, over five hours after he arrived in the emergency department. NICE sepsis guidance says he should have seen a doctor urgently once he was identified as at risk of sepsis and been referred to the senior doctor urgently. This means once the triage nurse had identified P’s risk of sepsis, they should have arranged for a doctor to review P urgently and escalated concerns to a senior doctor. P should have been seen by a doctor within one hour of being considered to have suspected sepsis. As it was, P did not see a doctor until four and a half hours after he was assessed by the triage nurse. Again, this is not in line with NICE sepsis guidance.
30. We consider the impact of the delays in P seeing a doctor and starting treatment for suspected sepsis later in this report.
31. The emergency doctor thought it likely P had suspected sepsis, possibly due to aspiration pneumonia, an infection caused by inhalation of food or vomit into the lungs. Their plan was for P to continue with intravenous antibiotics and fluids and admit him to the respiratory ward under care of the respiratory medical team. The healthcare records, which are brief, show the doctor recorded a clinical history from P’s brother. They noted P had been unwell over the last two days, was hot, sweaty and clammy, had a productive cough and breathlessness. The recorded examinations included checking P’s respiratory rate, breathing and chest, with crackles heard across his lungs but no wheeze. The doctor noted P’s observations including his heart rate and blood pressure. No other physical examination was recorded.
32. Our emergency adviser explains when a patient cannot communicate clearly, a full physical examination of the patient should be done, and this should include an abdominal examination. P had a severe learning disability, and alongside his severe physical disabilities, he was non-verbal and unable to communicate with staff at the Trust. We could see no evidence an abdominal examination was done while P was in the emergency department. We note the Trust has acknowledged an abdominal examination should have been done in the emergency department. It is a failing that this did not happen.
33. From what was recorded in the records, a diagnosis of a respiratory infection and suspected sepsis was reasonable at that time. Because an abdominal examination was not carried out, we cannot say whether an abdominal CT scan would have been indicated at the time and we are unable to reassure Mrs B about this. This uncertainty is an injustice to her. We discuss whether a CT scan should have been done sooner, later in this report.
34. While blood tests to check for sepsis were arranged promptly, in our view P should have seen a doctor within one hour, treatment for suspected sepsis should have been started within the same timeframe, and a full physical examination should have been done in the emergency department including an abdominal examination.
35. There is no indication that sepsis was a factor in P’s death. However, other symptoms, not specific to the working diagnosis of pneumonia or suspected sepsis, were not explored or acted upon. We think there were failings in the care and treatment provided to P in the emergency department, which meant a full picture of his signs and symptoms were not considered when reaching decisions about his clinical care and treatment. This is turn led to a delay in identifying an abdominal cause for P’s illness.
36. The Trust’s response to the complaint says a delay of provision of antibiotics of 84 minutes was very reasonable as it allowed more targeted therapy to be determined and started and says P did not trigger for red sepsis (severe sepsis). We have found the NICE sepsis guidelines state patients with a NEWS2 score of 7 or higher, as P had, should be considered ‘high risk’ for sepsis and require more urgent treatment. We can also see the guidelines says antibiotics should be started promptly, with the antibiotics reviewed once blood test results are available. The Trust’s assertion that delaying provision of antibiotics to a person with suspected sepsis until test results are available is not in line with NICE sepsis guidelines.
37. The Trust told us it has undertaken work to improve its care and treatment of sepsis within its emergency department. Its review of sepsis within its emergency department showed that in March 2025, the average time for patients to receive antibiotics was almost 80 minutes. It acknowledges that for high-risk sepsis, antibiotics should be given to patients within one hour of identification of sepsis. We noted in January 2025 just over 80% of patients received antibiotics within one hour. The Trust also noted less than 50% of sepsis patients were recorded as being seen by a senior doctor within two hours and recognised this may be due to not all senior reviews being documented or timestamped. The Trust has a target for 93% of sepsis patients to have their initial medical review by a doctor within 30 minutes, although we note in January 2025 only 66% of patients had a review within 30 minutes. These show the Trust’s management of suspected or confirmed sepsis in patients is still not in line with the NICE sepsis guidance.
38. We recognise sepsis was not a factor in P’s death, but we are concerned about the wider public impact of the failings we have found linked to sepsis management. We think there is more work the Trust can do to improve its care and treatment of patients with sepsis, and so we include at the end of this report, recommendations for the Trust to involve its patient safety representatives in planning actions to improve this.
Family’s and carer’s concerns about non-respiratory symptoms
39. Mrs B says she, P’s father, and P’s carers (including his brother) raised concerns with nurses about P’s consistent burping, which was out of character for him, and other symptoms such as vomiting and sweating. These symptoms were raised with nursing staff by family and carers but were not recorded in the healthcare records or investigated.
40. Based on his NEWS2 score and presenting symptoms, we do not think it unreasonable that aspiration pneumonia and sepsis were suspected on P’s arrival at hospital. P had symptoms suggesting he may have pneumonia in line with NICE guidelines on diagnosing pneumonia in adults. We take into account P’s severe physical disabilities and that he had been vomiting prior to arriving at hospital, which make him more susceptible to aspiration pneumonia, which can be caused by the inhalation of vomit. Moreover, pneumonia can cause patients to feel unwell with symptoms of vomiting or nausea.
41. NHS Improvement published improvement standards for NHS Trusts in 2018, which provided a benchmark for all Trusts to drive improvements in their services to people with learning disabilities. These set out that Trusts must make reasonable adjustments to care pathways to ensure people with learning disabilities can access highly personalised care and must work and engage with the families and carers of patients with learning disabilities.
42. NHS England’s guide for clinical staff in managing patients with a learning disability says that diagnostic overshadowing can occur, when a person’s symptoms are misattributed to their learning disability. It says staff should listen to patients and carers and understand patients with a learning disability may not respond or show symptoms of pain in standard ways. It adds staff should ask for specialist support or advice from its hospital learning disability team or liaison nurse. We recognise this guide was published after the events, but it is relevant as it sets out the reasons why listening to family’s and carers’ concerns and taking account of how a patient with learning disability may respond differently, are important to avoid diagnostic overshadowing.
43. We think it is possible P may have had aspiration pneumonia. However, P also had other symptoms, not related to a respiratory infection, which his family and carers were concerned about. Mrs B says P was not coughing as was recorded by the doctor in his healthcare records, but gagging, and she thinks was due to reflux of some contents from his stomach, not to phlegm from his lungs. The main non-respiratory symptom raised by the family and carers was consistent burping, which was out of character for P.
44. Burping is a very non-specific symptom which may have many causes. As burping is a non-specific symptom, we consider the cause of this, and of P’s vomiting, should have been explored and an abdominal cause of P’s symptoms considered. This would have given doctors treating P a more complete picture of his condition and the opportunity to consider other causes for his illness. We note the Trust’s view that a symptom of continuous burping is not specific for any particular illness, but we do not agree this symptom was not significant. The failure to consider and explore the cause of burping and vomiting meant there was a risk of diagnostic overshadowing, which we think is likely what happened here.
45. Our nurse adviser explains if someone is unable to communicate verbally, staff should document how pain and nausea are assessed, and what person-centred signs for the person show pain or nausea is present. P had a history of constipation and urine retention, recognised by the doctor in the emergency department, and the healthcare records note P had recently had six days of constipation. Constipation and associated problems are one of the key causes of premature death in people with learning disabilities. P’s recent history of constipation alongside his symptoms of abdominal distress (continuous burping and vomiting) should have been noted by nursing staff and raised as a red flag with medical staff, who should have examined P’s abdomen and explored the reasons for his symptoms.
46. The nursing records are brief and do not include details of any concerns raised by family or carers. There are records of nursing observations related to pain, nausea and vomiting but it is unclear if those records were available to doctors. It is also unclear how pain and nausea were assessed, as P was unable to state if he felt pain or nausea. Nursing observations taken on 13 September state P had mild pain, and variably nausea or no nausea. From 10.59am to 2.06pm on 14 September the observations record P had ‘no pain’. There is one mention of vomiting in the observations, shortly after arrival on 13 September, otherwise the observations record ‘no nausea’.
47. Nursing staff continued to record P had no pain until 9.16pm on 14 September (after his stomach had perforated) when they recorded he had moderate pain. There are no notes in the healthcare records to show whether nurses asked family or carers for advice on whether P felt pain or nausea or recorded any concerns raised to them by family about pain, nausea or vomiting. We note towards the end of P’s life, nurses recorded he appeared comfortable and had little pain.
48. The carers’ diary notes set out clearly their concerns over the weekend. These record P vomited twice during the day on 13 September (which were not noted in his healthcare records). Further carers’ notes record P vomited again at 2am the following day, with the carer noting ‘P has been retching and a little sick’. The carer notes for 14 September show omeprazole (a medication given to settle the stomach) was given at 3.30pm on 14 September, and cyclizine (anti-sickness medication to prevent vomiting) was given at 5.45pm after P was sick and recorded as ‘very uncomfortable’. This suggests that, although not recorded in the clinical records, P continued to have vomiting and abdominal discomfort throughout his admission and required medication to help with this. The carer goes on to note P continued to be unsettled that day from 5.15-6.45pm so morphine was given. He remained unsettled so further morphine and paracetamol were given at 7.15pm.
49. The observations recorded do not match with the carers’ diary notes of pain and discomfort, nausea and vomiting, or Mrs B’s account of witnessing her son in distress throughout the weekend. Additionally, videos of P provided by Mrs B, taken on the evening of 14 September between 7pm and 9.01pm, show him to be clearly distressed and uncomfortable. The fact P was given morphine and paracetamol throughout his stay suggests he was experiencing pain despite the healthcare records recording he had no pain. Similarly, P was given medication to settle nausea and vomiting which suggests these symptoms were also present. From the evidence we have seen, we do not think staff appropriately listened to family’s concerns and assessed P’s symptoms of pain, nausea or vomiting during their observations.
50. P had no spoken communication and was wholly dependent on his family and carers to speak on his behalf. Our nurse adviser says the family’s concerns about P should have been seen as an important resource to ensure as much information as possible was gathered to enable a full clinical assessment. This means the family’s and carers’ concerns about burping, history of vomiting, and any expressions of pain or discomfort should have been listened to by staff and recorded in the healthcare records.
51. An ‘About Me’ document was given to P’s family to complete following his admission to the respiratory ward, but P had had previous hospital admissions and so this information should already have been available in his healthcare records. There is a note from the acute liaison nurse dated 27 November 2014 setting out actions to take if P attended the emergency department or was admitted, which related to his history of seizures. This included advice to contact the acute liaison learning disability nurse. The Trust has an acute liaison learning disability service which, from what we could see, had previously had contact with P. NHS England’s learning disability standards recommends patients with learning disabilities have a hospital passport. We can see from the records that P’s family and carers were given the Trust’s carer’s passport (‘About Me’) to complete. This document states if the person is unable to verbalise pain, the PAINAD assessment tool (Pain Assessment in Advanced Dementia, a tool used to identify pain from physical observation in people with severe cognitive impairment) should be used. We did not see any evidence of a PAINAD assessment in the records.
52. The Trust’s standard operating procedures for its acute liaison learning disability service state its role is to provide a liaison service by visiting any patient with a learning disability to assist them, their carers, and hospital staff, to achieve better outcomes from their time in hospital. The service accepts referrals for both planned and emergency admissions to hospital. The liaison team works from 8.30am to 4.30pm on Mondays to Fridays, with no specialist cover in the evenings or overnight, at weekends or on bank holidays. The team has a three-day target for responding to in-patient referrals and there is no alternative framework set out for referrals related to the emergency department or emergency admissions. The acute liaison service employs currently 2.2 full time equivalent learning disability liaison nurses and a 0.6 full time equivalent secretary.
53. The Trust told us a referral was sent to the acute liaison team at 10.43am on Friday 13 September, when P became a logged patient at the hospital. We can see P arrived at the Trust at 2.10am that day. It is not clear who made the referral to the acute liaison service, when the decision to involve them was made, or why a referral was not made earlier, as P had been in hospital for over eight and a half hours before the referral was made.
54. We could not see any reference in the healthcare records to any consideration of involving, or making a referral to, the Trust’s acute liaison learning disability service. This would have alerted clinical staff involved in P’s care that a referral had been made. It is not clear if P’s family were informed of the referral, or if the staff involved in P’s care were aware of this referral. Both GMC’s Good Medical Practice and NMC’s Code of Practice state doctors and nurses should record decisions made about patients in the clinical records. This means whoever made the referral to the acute liaison team should have recorded in the records that this referral had been made.
55. The Trust says the referral was opened by the team’s secretary at 12.57pm on Monday 16 September. By that point P had died, and so the referral was closed, and no action was taken. The Trust did not provide any explanations why there was a delay in the team acting on the referral, other than the team does not work over weekends. We can see that the acute liaison team accepts referrals for emergency admissions, and the Trust recognises that the majority of referrals to this team will be for unplanned admissions. Despite this, the turnaround for the team to respond to emergency admission referrals is within three working days, the same timeframe for responding to referrals for planned hospital admissions.
56. A learning disability liaison nurse could have identified any family and carer concerns and liaised with nurses, doctors and other clinicians as needed to support effective interventions, information sharing and communication with the family. As P was admitted as an emergency in the early hours of a Friday morning, we think he and his family and carers should have been able to access the liaison team on the day of his admission. As this did not happen, P and his family and carers did not benefit from the support a learning disability liaison nurse could have provided to them in raising their concerns with doctors and nurses.
57. Our nurse adviser says pain assessment and treatment can be difficult for patients with poor communication due to a learning disability. This is why a person-centred approach to pain assessment is important, to ensure pain is quickly identified and effectively treated. The evidence we have seen (which we address throughout this report under the other headings) shows P appeared to be suffering from pain and distress, which was not recognised by nursing staff and so was not effectively addressed. This would have caused additional distress to P, his family and his carers.
58. We have gone on to consider the impact of not passing on information provided by family and carers to the medical team. P was experiencing symptoms of abdominal distress, but this information was not recorded. He also had a recent history of constipation and there is an increased risk of premature mortality in patients with learning disabilities and constipation. Consideration should have been given to further assessments to rule out any other potentially life-threatening conditions. We do not think the communication between the nursing and medical teams provided doctors with the full picture to enable any adjustments to be made relating to P’s learning disabilities, existing co-morbidities and the evidence base on premature mortality.
59. Our nurse adviser says the standardised end of life care plan in the healthcare records is not person-centred and does not provide room for staff to add person-centred notes and plans, so there was no space to include P’s specific needs as a patient with learning disabilities. We also noted many sections of the nursing records are incomplete and not signed, and we consider the nursing documentation was poor. Sections related to consent and capacity are incorrectly completed, as it is clear P was considered to lack capacity to make decisions about his care. No record was made of P’s capacity or of any best interest discussions, and in some places (a box titled ‘has a relevant decision been made in relation to the Mental Capacity Act’) has been completed as not applicable. Considerations of capacity and consent are a legal requirement, are always applicable and should always be documented.
60. We find that concerns raised by P’s family and carers about his pain and symptoms were not adequately listened to or acted upon. We also consider the referral to the acute liaison learning disability service could have been made sooner and acted upon the same day. The Trust claims the service is available to respond for emergency admissions, but we find this is not the case. We consider these failings led to the doctors treating P not having a full picture of his condition, and to P’s family feeling unheard. This led in turn to a delay in identifying an abdominal cause for P’s illness, which we go on to discuss under the heading below.
61. The Trust told us it is currently working on improvements in the care, treatment and support it provides to patients with learning disabilities. These include provision of learning disability sensory bags, which include communication aids and a health passport. The Trust acknowledges the 2022 LeDeR (Learning from Lives and Deaths, a review of deaths of patients with learning disabilities led by NHS England) national report shows while there are a similar proportion of patients with learning disabilities within the Midlands (where the Trust is based) to other regions of England, the Midlands has the highest mortality and avoidable mortality rates of patients with learning disabilities in England (20% of all deaths of patients with learning disabilities in England).
62. The Trust acknowledged it only has 2.2WTE (full time equivalent) learning disability liaison nurses covering the entire Trust, which does not cover the children’s hospital, and it needs to invest in its learning disability liaison service to address contributing factors to avoidable mortality.
63. The Trust adds it is working to bring its services to patients with learning disabilities in line with the Royal College of Emergency Medicine’s Learning Disabilities Toolkit, published in September 2024. It says this will include all patients with learning disabilities who present with abdominal pain need a senior review, and all patients with learning disabilities require discussion with a senior clinician. The Trust acknowledges there is currently poor compliance within its staff with flagging patients with learning disabilities and a lack of education and awareness within its staff. It says work is ongoing to address issues relating to care for patients with learning disabilities.
64. At the end of this report, we include a recommendation the Trust continues and builds on the work it is currently doing to improve its services to patients with learning disabilities, with the involvement of its patient safety specialists.
Investigating signs of an abdominal problem
65. Mrs B says there were delays in investigating signs of a potential abdominal cause for P’s illness, including a delay of over 40 hours to do an abdominal CT scan, which she thinks should have been done in the emergency department. The CT scan showed P’s stomach had perforated, by which time it was too late to treat him. Mrs B says she now knows P had a twisted stomach (volvulus) and if this had been recognised earlier, it could have been treated before his stomach perforated.
66. P’s symptoms on arrival in the emergency department included shortness of breath, pain (although he was unable to state where he felt pain), regular episodes of vomiting and constant burping. Some of P’s symptoms on his admission were consistent with a working diagnosis of a respiratory infection, and we do not think the initial suspicion of pneumonia was unreasonable. However, P had other symptoms which pointed to problems that were not related to respiratory conditions, and we think these should have been investigated.
67. We note Mrs B’s concerns about how long it can take pneumonia to develop. Our physician adviser explains there is no set time on how long pneumonia takes to develop. With aspiration pneumonia, lung inflammation starts immediately after vomit is inhaled into the lungs, and this can develop into pneumonia within hours.
68. The Trust said in its response to the complaint, the chest X-ray done in the emergency department did not show any evidence of abdominal issues and an abdominal CT scan was not done in the emergency department as there was a strong suggestion P had pneumonia.
69. A chest X-ray was taken at 3.45am on 13 September and reported at 11.09am the same day. The X-ray report notes ‘bilateral perihilar atelectasis’ (collapse of small air sacs in the lungs), which the Trust says could be caused by infection. The respiratory consultant reviewed P at 12.00pm. They noted the X-ray report, and alongside P’s symptoms of fever, productive cough, shortness of breath and poor swallowing, and lung crackles heard on his chest, recorded right sided lung changes. Our physician adviser says those signs and symptoms align with a working diagnosis of aspiration pneumonia as set out by the BMJ’s Best Practice guidance on aspiration pneumonia. However, this does not account for the other symptoms P had such as continual burping, or Mrs B’s statement that P was not coughing but gagging, suggesting these symptoms related to an abdominal issue.
70. Our surgical adviser says the chest X-ray also shows a large hiatus hernia in P’s chest behind his heart, which was not mentioned on the X-ray report. There was no evidence of perforation of the pneumomediastinum (a tear in the space between the lungs and chest wall) or pneumothorax (air in the space between the lungs and chest wall) at that time, which means his stomach had not perforated at the time this X-ray was done.
71. Our radiology adviser says the chest X-ray image is of poor quality, as P was rotated (not straight) and this was made worse by his spinal deformity. The film has been placed in the anteroposterior position (front to back of the body, opposite to that which is ideal) as P was unwell and lying flat. The best images for a chest X-ray are taken when the patient is upright. As a result of these technical issues, the images of the lungs and around the heart are not clear. Our radiology adviser says the hiatus hernia is not clearly visible on the chest X-ray and they would not expect most radiologists to report this. They add there is no gas within the hiatus hernia and it is not dilated, both features they would expect with a gastric volvulus. They say there was no indication to recommend a CT scan based solely on what the X-ray shows.
72. The healthcare records show the assessment done at 11am on 13 September by a nurse practitioner, when P moved to the ward, shows an abdominal examination was done with a note ‘SNT’ (soft non-tender). Our physician adviser says this, along with P recorded by staff as being more comfortable on 14 September with improvements in vomiting, suggests he did not have gastric perforation on 13 September or during the day on 14 September. However, taking into account what we have previously said, that P could not express to staff when and where he felt pain, and as his family’s concerns of pain and discomfort were not considered, we do not know whether any aspect of this examination was painful to P. This means we cannot be certain whether the volvulus had developed at this point.
73. The consultant physician planned to continue antibiotics and prescribed anti-sickness medication for nausea and vomiting. P was reviewed again at 7.50am on 14 September due to an increase in his NEWS2 score to 5 (medium risk requiring urgent medical response). At that point P’s vomiting was noted to have improved and his carers said he had been more settled overnight. P’s NEWS2 score reduced over the course of the day, reaching 3 (low risk) at 2.06pm. P had an epileptic seizure at 2.30pm, so a plan was made to seek neurology advice. It was noted P had epilepsy and normally had three seizures each day.
74. At 6pm on 14 September P vomited again, with ‘coffee ground’ vomit (black vomit caused by the presence of blood in the stomach). He was noted to have severe pain and a rigid abdomen. P was reviewed promptly at 6.15pm by a surgeon, who ordered a CT scan which was done at 8.29pm. The written report of the scan was completed at 9.31pm.
75. GMC’s Good Medical Practice states doctors must provide a good standard of practice and care. To do this, doctors must adequately assess the patient’s conditions, where necessary examine the patient, and promptly arrange investigations where necessary.
76. With the symptoms P had, and the poor quality of the chest X-ray, further assessments should have been done to identify causes of his non-respiratory symptoms. The poor quality of the X-ray means this would not have given clinicians an optimum picture of what was happening in P’s body. Other non-respiratory symptoms, such as burping and vomiting, not typical for P, should have been explored, actions which would have been in line with Good Medical Practice.
77. The suspicion was P had aspiration pneumonia. While this may not have been an unreasonable suspicion on his arrival at hospital, he had been vomiting before arrival and during his admission, and the reason for vomiting was not investigated. We recognise vomiting can be a symptom of pneumonia, but excessive burping and a history of recent constipation are not. While our radiology adviser says the hiatus hernia, identified by our surgical adviser as large, was not clearly visible from a radiologist’s perspective, they acknowledge the X-ray image is poor. In taking account of our physician advisers’ view there was no indication to do a CT scan, this view is based on limited information recorded in P’s clinical records. As we have discussed previously, the healthcare records do not present a full picture of P’s symptoms, which included non-respiratory symptoms. Our emergency adviser agrees from what was recorded in the records, there is no indication to do a CT scan, but concedes as an abdominal examination was not done, it is difficult to know whether a CT scan would have been indicated earlier.
78. We agree that, without doctors having the full information about P’s symptoms and without the appropriate physical examinations, especially an abdominal examination, we cannot know whether a CT scan should have been done earlier. A CT scan done earlier would have confirmed a large hiatus hernia, and likely signs of a volvulus developing. These would have provided an answer to why P had symptoms of vomiting and excessive burping. If it was needed at this point, consideration could have been given to non-surgical treatment to decompress the hernia (reduce pressure in it), such as through endoscopy or insertion of a nasogastric tube. This may have reduced the risk of the stomach perforating and leading to P’s death.
79. The written report of the CT scan does not mention volvulus, although this is written by a surgeon in the healthcare records. Our surgical adviser confirmed they could see evidence of volvulus on the CT scan images alongside gastric perforation. They think it is unlikely the volvulus developed after admission as they say P’s symptoms of vomiting and belching pointed to him having an incarcerated hiatus hernia or gastric volvulus on admission.
80. Our surgical adviser explains P did not have signs or symptoms of gastric perforation on admission, and it is likely this occurred later and led to the acute deterioration seen during the afternoon of 14 September.
81. Taking the evidence we have seen into account, we think it is likely P had the volvulus, or that it was developing, on his admission to hospital and that this caused him to become unwell in the early hours of 13 September 2019. We think P showed signs and symptoms of an abdominal cause of his illness on admission, which were not recorded by nursing staff or shared with doctors. This meant an abdominal cause for his symptoms was not explored, leading to a delay in diagnosis of a serious abdominal condition. By the time action was taken after P’s condition deteriorated, the gastric perforation had already occurred.
82. Gastric perforation is a life-threatening condition that can only be treated by emergency surgery, which carries a high risk of complications. Sadly, we agree it was very unlikely P would have survived surgery, which meant the decision to move P to end of life care was the only option available.
83. We have seen evidence of failings in relation to investigating signs and symptoms of an abdominal cause for P’s illness. We go on to consider the impact of these collective failings below.
Impact of failings identified in abdominal care and treatment
84. Mrs B feels strongly if the abdominal cause of P’s illness had been identified earlier, there would have been the chance to provide some treatment for him, but as this was not identified until it was too late, P was given no chance of recovery at all.
85. The Trust acknowledged there is no record of an abdominal examination done in the emergency department and conceded this should have been done. However, the Trust does not think this would have made a difference as it says P’s abdomen was examined when he was admitted to the ward and recorded as normal. In the Trust’s view, the volvulus and gastric perforation more likely happened after P’s admission, and it does not think doing a CT scan sooner, or diagnosing the abdominal issues earlier, would have made any difference to the outcome. It says P was not felt to be a suitable candidate for surgery (the only treatment for gastric perforation) as a result of his co-morbidities.
86. Gastric volvulus is a rare condition which involves abnormal twisting of the stomach. It is most commonly associated with para-oesophageal hiatus hernia, a condition in which part of the stomach protrudes through the diaphragm (the muscle that separates the chest from the abdomen) into the chest cavity and wraps around the outside of the oesophagus. Volvulus can lead to ischaemia (loss of blood supply) of the stomach which in turn can lead to perforation of the stomach. Large hiatus hernias or volvulus are usually successfully treated with surgery, and this can prevent the development of gastric perforation. In cases where patients may not be suitable for surgery, there are non-surgical treatment options which may temporarily resolve the condition.
87. The most common symptoms of volvulus are progressive chest pain, vomiting and upper abdominal distension (swelling of the upper part of the abdomen where the stomach is). Other symptoms may include epigastric pain (pain in the upper abdomen) and unproductive retching. P had symptoms of vomiting and unproductive, continuous retching/burping on admission, and he appeared from his family and carer’s accounts to be in pain, although he was unable to state where his pain was. In addition, where he was recorded as having a productive cough, we take into account Mrs B’s view he was not coughing but gagging, and producing contents from his stomach, not his lungs.
88. We know from the X-ray that P had a large incarcerated oesophageal hiatus hernia (the herniated part of the stomach becomes trapped in the opening between the stomach and the oesophagus) on his admission to hospital. This led to volvulus, which left untreated led to ischaemia in the stomach, causing the gastric perforation. Taking into account what can be seen on the chest X-ray, we cannot be certain whether the volvulus was present on admission or developed after his admission. Our surgical adviser thinks it is more likely than not, from the signs and symptoms P had, that he did have volvulus on his admission to hospital and this was the likely cause of him becoming unwell prior to being taken to hospital. We cannot be certain of this, as a CT scan was not done until after the stomach had perforated.
89. Mrs B told us she thinks P was physically stronger than doctors gave him credit for and may have been able to survive surgery. She says P surprised his consultant paediatrician for the way he coped with the challenges of his epilepsy throughout childhood and had an operation as a child without any complications. She says the consultant surgeon had told her at the time of events if they had identified the abdominal issues earlier, something could have been done. She says the Trust denied this in its responses to her complaint.
90. Whilst we understand and appreciate Mrs B’s views about how P had coped with many challenges throughout his childhood, we have to consider his condition at the time of these events. We think it unlikely P would have been able to survive surgery once his stomach had perforated, and unfortunately we agree the gastric perforation was fatal. Due to P’s co-morbidities and how unwell he was at the time, he would not have been fit for surgery to treat the hiatus hernia or the volvulus, had they been identified before the gastric perforation occurred.
91. However, there are non-surgical treatment options available for patients with hiatus hernias or volvulus who are not able to have surgery. These include endoscopy (insertion of a tube with a camera into the stomach) or insertion of a nasogastric tube (a thin tube which is inserted into the stomach through the nostrils). If endoscopy is used, the camera can show any ischaemia in the stomach and show the extent of damage from loss of blood supply caused by volvulus. Once the endoscopic or nasogastric tube is in the stomach, decompression can be done (relieving the pressure within the stomach) which can reduce the hiatus hernia, moving it back into the abdominal space. This can help the stomach to untwist if volvulus is present, restoring the blood supply before death of stomach tissue occurs. This can then prevent the stomach from perforating. This method has limited success rates and often is only temporarily successful, requiring further treatment later on. These non-surgical treatment options for gastric volvulus are reportedly successful in only one third of cases.
92. Without surgical treatment, the mortality rate from volvulus is around 80%, according to an article published in Medscape about gastric volvulus. This article explains most cases of volvulus can be successfully treated with surgery. However, there are times when surgery is not possible or suitable, such as in patients with multiple co-morbid conditions who are poor candidates for surgery. Often the use of endoscopy may be used to temporarily stabilise the stomach, to enable surgery to be done in a non-emergency setting. Unfortunately, it does not seem like proceeding to surgery would have been an option for P. However, non-surgical treatment options as outlined above could have been considered.
93. We think there was a missed opportunity to diagnose the hiatus hernia and developing volvulus much earlier in P’s admission. We know the hiatus hernia was present on his admission, and on balance we think the volvulus may have been present or developing then too. Had these conditions been identified, this would have allowed the treating clinicians to consider non-surgical treatment of the hiatus hernia and volvulus through the use of endoscopy or insertion of a naso-gastric tube.
94. We do not know if P would have been fit enough to have those treatments, and we need to consider as well that there would only have been a one in three chance of the treatment being successful and preventing gastric perforation. However, there was a missed opportunity to consider and discuss treatment options with P’s family. Had this taken place, there is a chance treatment may have been provided which may have prevented the gastric perforation which caused P’s death at that time, and in those circumstances. And if it was felt non-surgical treatment was not an option for P, this would have given the clinicians the chance to speak to P’s family and carers and prepare them for what would happen next.
95. As it was, P’s family did not have the opportunity to prepare themselves for the likelihood that P’s stomach would perforate and that this would be fatal. This meant the diagnosis of gastric perforation and the move to end of life care came as a sudden shock to his family. We go on to make recommendations to address this later in our report.
Inadequate pain relief for 20 hours before P died
96. Mrs B says when they were given the news of the gastric perforation on 14 September, they were told P only had 4-6 hours to live and would die peacefully. Instead, they watched P suffer in pain and discomfort for a further 20 hours before he died at 8.18pm on 15 September. They felt P had pain and distress at the end of his life and were concerned at the time taken for the Trust to provide him with sufficient morphine (a strong opiate painkiller) to relieve his suffering.
97. When Mrs B complained to the Trust on 19 September, she said she felt morphine could have been drawn up ready to give to P rather than waiting for two nurses each time. The Trust responded this was not possible as morphine is a controlled drug. The consultant who treated P wrote to Mrs B on 30 September 2019, explaining what had happened. It said they were sorry it took so long for them to get on top of P’s pain control. It acknowledged there was a delay in giving top up drugs, due to two nurses being required to check the morphine as it is a controlled drug.
98. Morphine is listed as a controlled drug under the Misuse of Drugs Regulations 2001. NICE guidelines on the use of controlled drugs add that witnesses to administration need to record observation of the administration of those drugs in the records.
99. The BNF recommends a starting dose of 20-30mg oral morphine over 24 hours to treat pain in end of life care, which translates to 10-15mg morphine given subcutaneously through a syringe driver. Top up doses can be prescribed and given as needed and the rate of the syringe driver can be adjusted accordingly. It does say when using morphine in palliative care, specialist advice should be sought if pain control is proving difficult to achieve. The use of top up doses twice or more a day should prompt a pain management review. The records show P was prescribed morphine for pain control in line with BNF guidelines, but there were delays in recognising his increasing need for pain relief, from his family’s statements he was in pain, and administering the increases in the dose of morphine once this was prescribed.
100. The Trust’s intravenous drug policy states two registered health care practitioners, usually registered nurses, need to check intravenous medicines when providing them to patients. This includes checking the drug selection and dose, preparing the administration, and providing the drug to the patient. This means any patient given a syringe driver providing fluids or medication, including morphine, must have two qualified health care practitioners check all stages of this process, from preparation of the liquid to giving them to the patient, with one of them acting as a witness observing the drug being given to the patient.
101. The records show one of the surgeons wrote a prescription for intravenous paracetamol and sub-cutaneous morphine (given through a syringe driver) when they saw P at 6.15pm on 14 September, before he went for his CT scan. P was given 5mg morphine at 6.45pm with further top up doses of 2.5mg morphine at 7.20pm and 10.30pm. The consultant surgeon reviewed P at 10.55pm. With the CT scan results showing gastric perforation, the consultant recorded P’s condition was not treatable, and he was sadly reaching the end of his life. The decision was made at that point to move P to end of life care. The consultant explained this to P’s family at that time.
102. A nursing end of life care plan was started at 00.30am on 15 September, with the syringe driver remaining in place. Midazolam, a sedative used to relieve agitation in end of life care, and to prevent seizures, was also prescribed. P received top up doses of 5mg morphine four times on 15 September between 3.30am and 1pm, with additional top up doses of 5mg midazolam during this time.
103. The end of life care assessments for 15 September show a nurse recorded P was agitated and in pain at 2am. The nurse’s note written retrospectively at 2am adds family had voiced their concerns that P was very agitated and in a lot of pain. The nurse wrote they had given additional morphine doses and made the doctors aware of this, and that P appeared more settled. P was then checked by nursing staff, according to the records, every two hours. Each time P was checked after 2am nurses recorded he had no pain or agitation.
104. Nevertheless, we can see P’s family continued to raise concerns about P’s pain levels and told staff he was in agony. Mrs B told us in their experience nurses did not come to check on P every two hours. She says P would sleep and then wake suddenly and make movements and noises indicating he was in pain and distressed, and her husband would then go looking for the nurses to come and see him. She says when nurses did see P, it would then take another hour or so before any medication was changed.
105. A nurse’s note written retrospectively at 6am stated that P appeared settled to the nurses, but the nurse acknowledged his family had continued to raise concerns and they knew him best. The nurse added they had contacted the on-call doctor.
106. The on-call doctor saw P at 5am and noted P had a syringe driver containing 5mg of both morphine and midazolam. The doctor recorded P’s family felt he was in pain and appeared distressed and needed more morphine. The doctor increased P’s syringe driver prescription of morphine to 20mg, and increased the midazolam to 30mg. The new doses were started at 6.09am, over an hour after the prescription was changed.
107. Later that day, a nurse spoke to doctors at 2pm about P have needed multiple top up doses of pain relief. A doctor then increased the morphine prescription to 40mg morphine, with the new dose of morphine started at 2.40pm. He continued to receive 30mg of midazolam through the syringe driver.
108. During the morning ward round, at 9.20am, the medical team planned to ask the palliative care team to review P. The palliative care team visited P at 3.15pm and noted he appeared more settled after the increased dose of morphine. They reviewed P’s medication and advised the team caring for him to continue providing him with 40mg of morphine, with additional top ups of midazolam if required. The records show from this point on P appeared to be more settled until he died at 8.18pm.
109. We understand Mrs B’s concerns that there were delays in providing P with higher doses of morphine to make him more comfortable. As we have explained, morphine is a controlled drug and, in line with the law and NICE guidelines on controlled drugs, and the Trust’s policy, two nurses were required each time to set up, administer and change the drugs in the syringe driver. We can see there were delays in starting the new prescription doses when they were increased twice on 15 September, of one hour and subsequently forty minutes. However, these did require two nurses to change the syringe driver on each occasion, and the administration of those prescriptions were in line with guidance and the Trust’s policy.
110. What is less clear is why there were delays in responding to the family’s concerns in the early morning of 15 September, that P continued to be agitated and in severe pain, despite having been started on morphine. This was recorded at 2am, and it was three hours before a doctor reviewed P’s medication, with the result that his medication was not increased for over four hours after it was recorded his family had raised these concerns. It is not clear at what point the on-call doctor was contacted to review P’s medications, as the only record of this was written retrospectively at 6am that day.
111. NICE guidelines on care of dying adults says: • 1.5.8 Regularly reassess, at least daily, the dying person’s symptoms during treatment to inform appropriate titration of medicine • 1.5.9 Seek specialist palliative care advice if the dying person’s symptoms do not improve promptly with treatment • 1.5.14 For a person who is unable to effectively explain that they are in pain, for example someone with learning disabilities, use a validated behavioural pain assessment to inform their pain management.
112. As our nursing adviser has previously advised, a person-centred approach to assessing P’s pain as a person with a learning disability should have been taken, but the end of life care documentation did not provide scope for this. This is another aspect of P’s care which a learning disability liaison nurse could have supported P, his family and clinical staff with, to ensure his family’s concerns were acted on promptly. Again, there is a mismatch between what the records show, with nurses largely recording no pain and that P was comfortable, and what his family were saying, that he was showing signs to them that he was in pain and distress. This is not in line with NICE guidelines on care of dying adults, as the nursing assessment of P’s pain was not adequate.
113. With notes suggesting the family had been raising concerns of P’s distress and pain by 2am on 15 September, we cannot see any reasons why he was not reviewed by a doctor before 5am. We think he could have been seen more quickly, with an earlier increase in medication to make him more comfortable.
114. In addition, the NICE guidelines say palliative care advice should be sought if the person’s symptoms are not improving with treatment. There is evidence that P continued to experience pain and distress, with his morphine dose increased again at 2pm on 15 September. A decision was made at 9.10am on 15 September to seek advice from the palliative care team. This was an appropriate decision in line with the guidance, but the palliative care team did not visit P until over six and a half hours later, during which time his medication had had to be increased again. It seems from the records that once the palliative care team visited, with advice to provide additional midazolam on top of what was given in the syringe driver, P did become more settled until he died.
115. Taking into account the family’s details of witnessing P in pain, our view is morphine was appropriately prescribed by doctors when P was assessed and appropriately administered in line with relevant guidance. However, there were delays in medication reviews in response to family’s concerns that the pain relief provided was not sufficient to make P comfortable, and a delay in a review from the palliative care team. Earlier involvement of the palliative care team could have resulted in earlier specialist review of P’s medication to make the end of his life less distressing and painful, and subsequently lessened the distress caused to his family.
116. We find there were failings with recognising P was in pain, and delays in pain management reviews from doctors and the palliative care team, which meant P suffered more than he needed to at the end of his life. We set out at the end of this report recommendations to the Trust to put this right.
Complaint handling
117. Mrs B complains about how the Trust handled her complaint. She says the Trust’s responses to her concerns were significantly delayed and she had to chase up updates on the progress of its investigation. She also says a resolution meeting she attended was not handled professionally, with the family not given sufficient opportunity to raise their outstanding questions at the meeting. She says the way the Trust handled her complaint meant the family had unanswered questions about what had happened to P, and they did not have closure.
118. Mrs B complained to the Trust on 22 October 2019, just over one month after P’s death. In her complaint letter, she requested to see a copy of P’s healthcare records relating to the events.
119. The Trust emailed Mrs B on 19 February 2020, saying its investigation was now complete and it would soon share its response with her. Mrs B responded to the Trust, the same day, saying she was still waiting for her son’s healthcare records.
120. The Trust responded to the complaint on 16 April 2020. Following this, Mrs B chased the Trust to query when she would receive the healthcare records, and the complaints officer told her the complaints team did not handle requests for records, and they had chased this with the relevant team. The Trust sent Mrs B a copy of P’s healthcare records on 22 April 2020.
121. Mrs B wrote to the Trust setting out further concerns on 2 July 2020. After chasing the Trust twice for an update, she contacted the Ombudsman on 18 November, telling us she’d had no contact from the Trust for over six weeks. We wrote to the Trust on 11 January 2021 asking it to respond to Mrs B’s complaint, with no response, so we wrote again on 21 February 2021.The Trust responded to Mrs B’s second complaint on 24 March 2021, over eight months after she had complained to them.
122. On 30 April 2021 Mrs B wrote to the Trust again, raising her outstanding concerns. The Trust wrote to Mrs B in June 2021 to suggest a meeting to discuss her complaint. The Trust wrote again to Mrs B in May 2022, confirming a meeting would be held on 16 June 2022, one year after it had initially offered the meeting. The Trust cancelled this meeting with no explanations and rearranged it for 10 August 2022.
123. Mrs B attended the Trust on 10 August 2022 to discuss her outstanding concerns. Mrs B says the meeting was poorly handled and disorganised. She told us there was limited time for the meeting, which was led by the doctor attending talking about different procedures which she felt had no relevance to her outstanding questions. She says there was limited opportunity at the meeting to ask questions, which meant most of her outstanding questions remained unanswered.
124. The NHS complaints regulations 2009 is a law which sets out how complaints about NHS services in England must be dealt with. This says organisations must investigate the complaint in a manner appropriate to resolve it speedily and efficiently, and keep the complainant informed about the progress of the investigation.
125. The NHS complaints standards say NHS organisations are thorough and fair when looking into complaints and makes sure service users who make complaints have their say and are kept updated during the complaints process. NHS organisations should discuss timescales with complainants and agree how they will be kept informed and involved, and provide regular updates as agreed throughout the complaint process. NHS organisations should give everyone involved in a complaint the opportunity to give their views.
126. The Trust told us there were delays in completing its investigation into Mrs B’s complaint as a result of the Covid pandemic. While this may appear to be reasonable, as the Covid pandemic started to affect NHS services including complaints departments in the spring of 2020, this does not appear to have affected the Trust’s investigation into Mrs B’s complaint.
127. While the Trust initially kept Mrs B updated regularly during its first investigation into her complaint, it is not clear why it took so long to respond to her request to see her son’s medical records. Data protection laws state people have the right to make a request to access their personal data held. Access requests must be processed by organisations within one month of receiving the request. It took the Trust six months to provide Mrs B with a copy of her son’s healthcare records after she requested this.
128. Overall, it took the Trust took three years to complete its investigation into Mrs B’s complaints, including 14 months to arrange a meeting when this was first offered. We can see Mrs B was not kept regularly updated aside from when she made her initial complaint, and had to continuously chase the Trust for updates and ask us to intervene to help her get a response to her second complaint. We received no response to our first intervention letter and so had to write to the Trust again. We can also see a lack of updates after Mrs B raised her third complaint and was offered a meeting, with very little evidence of communication with her over the 14 months it took to hold the meeting. In our view taking almost a year to arrange a date to meet with a complainant is not a reasonable timeframe and this is not in line with the NHS complaints standards.
129. Mrs B also has concerns about the explanations provided by the Trust and a lack of opportunity to raise her outstanding questions at the meeting.
130. The Trust acknowledges in its response that P was suspected to have sepsis on his arrival, and there was a longer wait for him to see a clinician than it would have liked. It said the doctor looking after P was not able to physically examine him, although it did not explain why. There is no acknowledgement of any delays in starting treatment of suspected sepsis for a high risk patient or of any actions it had taken to ensure patients with suspected sepsis had a shorter wait to see a clinician. We have addressed this in more detail earlier in this report.
131. The Trust’s responses do not acknowledge the presence of signs and symptoms not linked to a respiratory condition. It also implies the gastric perforation could not have been predicted or prevented and that what happened was inevitable. We do not agree.
132. Local resolution meetings offer the opportunity for complainants to ask questions to understand what happened. Mrs B says the meeting was led by the doctors providing explanations about things she felt were not relevant, and that there was limited opportunity in the meeting to ask questions. She had a list of 12 questions, most of which she says she was unable to ask at the meeting due to a lack of time provided for her to ask questions. The failure to offer Mrs B the opportunity to ask her questions was not within the spirit of the NHS complaints standards and meant her concerns remained unresolved.
133. We think there are failings in the explanations the Trust provided to Mrs B in response to her complaint, leading to her and her family having unanswered questions about what happened to her son.
134. In summary, we have found failings in the way the Trust handled Mrs B’s complaint, with a failure to keep Mrs B updated, delays in providing its second response and arranging a meeting, and a failure to ensure Mrs B felt involved in the meeting. We think these failings compounded Mrs B’s and her family’s distress and grief during a very difficult time.
135. The Trust told us that since 2022 it has undertaken work to improve its approach to handling complaints. It says it has improved its investigation report templates, introduced complaints investigation training for its matrons, and produced new local resolution meeting guidance which is shared with all Trust staff attending a complaints meeting. The Trust provided evidence it is continuing to drive improvements within its complaint processes.
136. Had these improvements in complaint handling already been in place at the time Mrs B made her complaint, it is our view that the failings we identified in this area could have been avoided. We make recommendations to the Trust to share with Mrs B what it had done so far to improve its complaint handling processes, and of further improvements it has planned.