Referral to a respiratory service
38. Mrs A told us the Trust referred Mr A to respiratory consultant too late. She said when the Trust made the referral, it initially arranged it with a specialist unfamiliar with an industrial disease. The Trust said Mr A’s respiratory problems were not of critical concern in the light of his heart failure.
39. The GMC guidance says, when treating a patient, a clinician must refer a patient to another practitioner when this serves the patient’s needs (paragraph 15c). It also says they must consult their colleagues (other clinicians) where appropriate (paragraph 16d).
40. We have seen the Trust noted Mr A had extensive lung scarring in August 2019. It did not refer him to a respiratory consultant until January 2020. We understand, in the meantime, he attended the heart failure clinic regarding his ongoing heart problems. We have considered whether the January 2020 referral was timely. We recognise Mrs A told us she insisted on this referral.
41. We understand Mr A’s heart failure was an acute problem. Acute conditions are severe and sudden in onset. In comparison, possible asbestos-related disease would have been chronic. This means a long-lasting condition or one that develops over time.
42. We understand heart and lung conditions have common symptoms, which may overlap. This includes breathlessness or that, for example, exercise can trigger symptoms. Our cardiology adviser explained it is common practice to address the acute condition first. They also explained there is no treatment for scarred lungs.
43. We consider the Trust referred Mr A to a respiratory consultant in January 2020 in line with the GMC guidance outlined in paragraph 39 of our report. This is because the Trust first addressed the acute condition. It is possible that the heart-related treatment could have resolved some of the symptoms Mr A was experiencing. As the breathlessness progressed, the Trust referred urgently him to a respiratory consultant in line with his wishes.
44. Mrs A told us the Trust referred Mr A to a lung specialist unfamiliar with the industrial disease. We recognise the Trust referred Mr A on 23 January. Mr A saw a respiratory consultant on 16 February. The MDT discussed Mr A on 19 February and referred him to occupational lung disease for further history on 21 February. Mr A sadly died before the Trust arranged an appointment.
45. We consider the Trust referred Mr A to a specialist in line with the GMC guidance outlined in paragraph 39 of our report. This is because the Trust referred him to a respiratory consultant. We understand following the appointment, and the MDT input, the Trust decided on the next steps, a referral to occupational health for further history.
46. We understand Mrs A feels Mr A should have been seen by a specialist familiar with industrial lung disease. However, at the time the lung scarring was only suggested to be due to asbestosis. The respiratory consultant arranged tests and next steps in order to establish if the lung scarring was due to asbestosis or if it was non-specific scarring.
47. We acknowledge Mrs A concerns and we understand how worried she was about this. We would like to reassure her we have seen no failings in when the Trust referred Mr A, and to whom. We recognise she may be disappointed by our decision here.
Communication
48. Mrs A said the Trust did not communicate how serious Mr A’s heart failure was. She said it gave them conflicting information about the allowed alcohol intake and provided no support for Mr A’s alcohol withdrawal symptoms.
49. The Trust said, in November 2019, it explained Mr A had stage three heart failure and that 50% of people may be able to survive five years. Mrs A disputes this happened. The Trust apologised the team was not as clear as it could have been.
50. The GMC guidance says a clinician must share relevant information with the patients and communicate effectively. The NMC guidance says the same for nurses.
51. On 12 August 2019, the notes say Mr A and his wife were ‘aware of the diagnosis and ongoing plan’, and that they ‘received heart failure education’. Mrs A disputes this happened. We recognise this record does not provide any detail of the conversation.
52. We have seen the notes referred to his condition as ‘stable’ and that his heart failure classification was II/III in November 2019. Stage II means one is comfortable at rest, but normal physical activity triggers symptoms. Stage III means even minor physical activity triggers symptoms.
53. We note the November MRI results showed some improvement in ejection fraction (EF). EF is a measurement of how much blood the left heart chamber pumps out with each contraction. We cannot see the Trust explained to Mr A his prognosis or the survival statistics as it suggested.
54. We think the diagnosis of heart failure on its own indicates seriousness of the disease. This is because, for most people, heart failure is a long-term condition that cannot be cured. However, treatment can help keep the symptoms under control, possibly for many years. That being said, we cannot see the Trust explained this condition does not improve and deteriorates over time. We think this is not in line with the GMC guidance outlined in paragraph 50.
55. Mrs A explained the Trust provided conflicting advice on whether Mr A was allowed to drink alcohol.
56. The NICE CG115 guidance suggests assessing the need for an intervention, and the level of alcohol dependence. It also says that all healthcare workers should be competent to assess or advise those who drink at harmful levels.
57. The NMC Code says a nurse must ‘act in partnership with those receiving care, helping them to access relevant health and social care, information and support…’ (paragraph 3.3).
58. The UCMO guidance says it is safest not to drink more than 14 units a week on a regular basis. The ESC guideline says a patient should abstain or avoid excessive alcohol and the clinician’s advice should be tailored to the aetiology, or cause (table 14.2 of the guidance).
59. Mr A had a heart failure of an unclear aetiology. The records say it was either secondary to alcoholism or calcification of a protective, fluid-filled sac that surrounds the heart and helps it function properly (pericardium).
60. Mr A admitted to drinking heavily (60-70 units per week) for around 40 years. In line with the UCMO guidance, this would be considered to be at a harmful level and hazardous to health.
61. In August 2019, the Trust’s records suggest a need to consider a referral to the local alcohol dependency team and to consider alcohol withdrawal symptoms. It is not clear from the notes whether this was considered at all or discussed with Mr A. Mrs A also told us this was not discussed with her or Mr A. We can see the notes of 14 August say the Trust ‘advised Mr A on drinking’.
62. On 1 October, Mr A’s alcohol intake was 16 units per week. On 28 October, there is no note on his alcohol intake, only ‘previous excessive alcohol consumption’. On 20 November, a registrar in cardiology advised Mr A to ‘reduce his alcohol intake today’. On 20 January, a heart failure nurse noted previous alcohol excess of 70 units a week. They noted Mr A weaned himself off and had been alcohol free for four weeks.
63. Our nursing adviser explained it is standard practice for the heart failure nurses to discuss patient’s lifestyle, including harmful alcohol use and behaviours that need to be addressed. We have seen no evidence to show this happened.
64. We have also seen no evidence in the records suggesting that the Trust communicated the recommended alcohol consumption or advised on reducing alcohol consumption. We recognise Mrs A told us Mr A received conflicting information. We think this is not in line with the NICE CG115 guidance, the NMC Code, or the UCMO and ESC guidance.
65. Mrs A also told us the Trust did not provide support for Mr A’s withdrawal symptoms.
66. The NICE CG100 guidance says ‘for people who are alcohol dependent but not admitted to hospital, offer advice to avoid a sudden reduction in alcohol intake and information about how to contact local alcohol support services. Note that a sudden reduction in alcohol intake can result in severe withdrawal in dependent drinkers (paragraph 1.1.1.4).’
67. The NMC Code says a nurse must ‘make a timely referral to another practitioner when any action, care or treatment is required’ (paragraph 13.1).
68. The Trust noted a referral to the alcohol dependence team may be beneficial, but seemingly took no action on it. It is not clear from the notes what symptoms of withdrawal Mr A was having or how this was impacting his day to day. There is no documented evidence that a conversation was had in relation to harmful drinking levels, or any help or treatment was needed by him.
69. Considering for how long Mr A drank excessive amount of alcohol, our nursing adviser said it is more likely than not that some sort of withdrawal symptoms would have been present at the time. Considering how Mr A drank 70 units per week and then went to zero units in six months (August 2019 to January 2020), in line with the NICE CG100 guidance, we would have expected to see at least some sort of advice or signposting for alcohol withdrawal symptoms.
70. We think the Trust should have spoken with Mr A and advised him how to seek help on withdrawal symptoms if needed. For these reasons, we consider the Trust has not acted in line with the NICE CG100 and NMC Code.
71. We consider the Trust failed to communicate regarding the nature of Mr A’s prognosis, and his alcohol consumption and withdrawal symptoms. We will consider the impact of this in the ‘impact’ section outlined in paragraphs 111 to 119.
A&E attendance on 2 March 2020
72. Mrs A told us Mr A had to wait for a long time to be seen in A&E. She said the Trust turned his oxygen off without telling them and later questioned whether it was the family who had done that. She said the Trust did not communicate how serious Mr A’s condition was on the day.
73. The Trust explained sometimes people deteriorate and that it explained Mr A was nearing the end of his life. It said it does not know why the oxygen was turned off as there are no notes about this. It also apologised for the miscommunication between the staff.
74. We firstly looked at whether Mr A was seen in a timely manner in the Emergency Department.
75. The RCEM guidance states that an assessment of patient’s presenting complaint and measured physiological parameters should be undertaken. The guidance says this should be conducted within 15 minutes of Emergency Department attendance or from registration which should take approximately 5 minutes.
76. This is a standardised process of prioritisation (usually conducted by a nurse) which determines how soon a patient should be seen by a clinician. Priority is dependent on the urgency of the patient’s condition (triage category).
77. Mr A arrived at the ED at 3.17pm on 2 March. A nurse took his further observations at 3.30pm and a doctor assessed him at 3.45pm.
78. Our A&E adviser explained that because the ambulance service pre-alerted the ED, Mr A should have been seen by a doctor 10 minutes after he was seen by the nurse. We recognise it happened 15 minutes after, but we do not think this is sufficiently below the standard to constitute a failing. We also note how comprehensive the doctor’s assessment was and that it outlined the next steps for Mr A’s care.
79. We have also reviewed the timeliness of the following actions and we have seen no evidence Mr A had to wait for a disproportionate amount of time. We can see Mr A had timely initial assessment investigations and treatment. This was followed by a period where the Trust observed him, and waited for the results, before a further review took place.
80. We have next looked at the Trust turning off Mr A’s oxygen and the communication around it.
81. The BTS guidance says oxygen should be prescribed to achieve a target saturation of 94-98% for most acutely ill patients or 88-92% or patient-specific target range for those at risk of hypercapnic respiratory failure. This is where oxygen and carbon dioxide cannot be kept at a normal level, resulting in an increase of the carbon dioxide in the blood. This means the blood cells are unable to carry oxygen.
82. It says that the best practice is to prescribe a target range for all hospital patients at the time of admission. This is so oxygen therapy can be started when needed, and for monitoring. It says the target saturation should be written (or ringed) on the drug chart, or entered in an electronic prescribing system.
83. The GMC guidance says a clinician must prescribe treatment if they are satisfied the treatment is serving the patient’s needs (paragraph 16a). It also says, as outlined in paragraph 50 of our report, a clinician must share relevant information with the patients and communicate effectively.
84. We know, both from the Trust and Mrs A that Mr A was on oxygen. Having reviewed the records, we cannot see the Trust noted a prescription of the oxygen, how it was to be administered, or Mr A’s target saturations.
85. At 10.27pm, the nursing record states that ‘doctor had taken off oxygen (…), patient desaturated and now we are struggling to get oxygen saturations up’. At 10.30pm, a junior doctor noted Mr A was ‘agonal breathing’. Agonal breathing is an abnormal breathing pattern, where the person takes sudden and irregular gasps of breath.
86. We note there are no guidelines that would advocate turning off oxygen in a manner described by Mrs A and the nursing entry. This is particularly so because Mr A was on 15L/min of oxygen (the maximum amount of L/min) delivered via a face mask.
87. Overall, we have seen no records outlining the decision-making process behind stopping the oxygen. Our A&E adviser explained, with no notes, and in the circumstances outlined, there was more likely than not no good reason to turn off the oxygen in such a manner. We think this is not in line with the GMC guidance, set out at paragraph 83.
88. Mrs A told us the Trust turned the oxygen off without telling her. We think, considering how poor the notes on the oxygen are, this likely happened. We think it is also likely the staff asked Mrs A whether the family had switched the oxygen off. We consider this is not in line with the GMC guidance, outlined in paragraph 50 of our report.
89. Mrs A told us the Trust did not communicate how serious Mr A’s condition was on 2 March. We have seen some communication around this noted in the records.
90. For example, we can see at 9pm, a medical consultant physician explained Mr A was very unwell and that he may die. They explained Mr A was not a candidate for the intensive care because of his frailty and co-morbidities. At 10.30pm a junior doctor advised the family Mr A was likely to pass away very soon. This is in line with the GMC guidance. This is because we can see the Trust communicated the seriousness of Mr A’s condition.
91. We have seen no evidence to suggest the Trust did not explain how serious Mr A’s condition was. We acknowledge how distressing Mr A’s death was for Mrs A, and her concerns about the events leading up to this.
92. We will consider the impact of turning off the oxygen and the communication around it in the ‘impact’ section, outlined in paragraphs 111 to 119.
Complaint handling
93. Mrs A told us the Trust’s complaint handling took too long. She said its response was inadequate and dishonest. She also said the Trust cancelled two face-to-face meetings on the day due to COVID-19.
94. The Regulations 2009 say the NHS organisation must respond within six months from when it received the complaint. The Trust’s Patient Relations Policy says the timescales for completion will be agreed between the Trust and the complainant. Both guidelines say, where the timescales cannot be achieved, the NHS body needs to update the complainant accordingly.
95. Mr A died on 2 March 2020. Mrs A made a verbal complaint on 5 March. We understand the Trust does not have a record of it. Mrs A put her complaint in writing on 29 June. The Trust acknowledged the complaint on 9 July. It said it would provide a response ‘shortly after’ 40 days. The Trust responded on 5 November.
96. Mrs A raised further concerns on 24 November. In early 2022, she requested our help to expedite the planned meeting. The Trust arranged a meeting on 22 March and 5 April however, it cancelled both. The meeting took place on 14 June. We recognise we were involved in late 2022 and 2023 again. The Trust provided its final response on 18 July 2023.
97. We do not doubt Mrs A spoke with the Trust’s Patient Advice and Liaison Service (PALS). However, we will look at the timescales from June 2020. This is because with the onset of COVID-19 pandemic, there was a national pause on the NHS complaint handling between mid-March and late June. As such, it was highly unlikely the Trust would have been able to act on the complaint before July. We also recognise the Trust apologised the call had not been recorded and acknowledged it was below the expected standard.
98. We note the Trust’s first response (November 2020) was later than what the Trust agreed with Mrs A but within the Regulations 2009. We have not seen any evidence the Trust told Mrs A there would be a delay. As the Trust responded after four months instead of the indicated month and a half, we think the delay was significant enough to require an update.
99. Regarding the meeting of June 2022, we can see it took the Trust 19 months for it to take place. We recognise the initial scheduling was for March but even if this had gone ahead, that was still 16 months after Mrs A raised further concerns. We note the Trust took another 12 months to provide its final response. We have seen the Trust provide some updates about the delays.
100. We consider the Trust did not update Mrs A about the delay to the response dated November 2020 in line with its Patient Relations Policy and the Regulations 2009. We consider the meeting of June 2022 and the following response dated July 2023 took over a year and a half to two and a half years, which is not in line with the Regulations 2009.
101. Our Principles of Good Complaint Handling says NHS bodies must ensure that complaints are investigated thoroughly and fairly to establish the facts of the case. It also says they must provide prompt, appropriate, and proportionate remedies. Lastly, it says senior managers are responsible and accountable for complaint handling.
102. Mrs A told us the Trust cancelled two face-to-face meetings at a short notice. The Trust said it cancelled both meetings on the day because of staff illness. It said in March, the Patient Relations Divisional Manager tested positive for COVID-19. It said in April, the consultant colorectal surgeon tested positive for COVID-19.
103. We understand on both occasions the Trust tried to find a substitute but was unable to find staff who was better placed to have this meeting. For this reason, it cancelled the meeting, notified Mrs A, and apologised for it. We recognise how frustrating and inconvenient it must have been for Mrs A.
104. Having reviewed the Trust’s rationale for the cancellation, we consider this was in line with our Principles of Good Complaint Handling. This is because the meeting required senior staff to be present and because there was no better placed doctor to advise on the clinical matters at the time. We are also reassured that the Trust apologised when it happened.
105. We recognise Mrs A told us the Trust’s responses were inadequate and dishonest. She said this was because the Trust had not addressed all her complaint and because it denied that the nurse came in to check Mrs A’s observations after he died.
106. The Trust and Mrs A have conflicting views of what happened after Mr A died. Mrs A said a nurse came in wanting to take observations and apologised for her mistake after realising Mr A had died. The Trust said a doctor certified Mr A’s death which is why it may have come across as taking observations. It apologised for the distress.
107. We recognise Mrs A is upset the Trust recalls these events differently. She said the Trust should have investigated more thoroughly. We note what she told us, but we do not think a different recollection means poor investigation.
108. We note, despite the disparity in the recollection, the Trust apologised which is what we would have expected to happen in this case. For this reason, we think the Trust appropriately remedied Mrs A’s frustration and grief which was caused by these events. This is in line with our Principles of Good Complaint Handling outlined in paragraph 101 of our report.
109. We have reviewed Mrs A’s written complaint and the Trust’s responses. We agree the Trust had not addressed all of the issues Mrs A raised. For example, Mrs A complained the Trust provided conflicting information on whether Mr A could have had alcohol. She also said the Trust had not provided support for his withdrawal symptoms. We cannot see the Trust responded to these concerns. As such, we consider this is not in line with our Principles of Good Complaint Handling.
110. We will consider the impact of the delays in the complaint handling and the inadequate response in the ‘impact’ section below.
Impact
111. We consider the Trust did not do the following in line with the relevant guidelines:
• did not communicate to Mr A or his family how serious his heart failure was • did not provide advice around alcohol consumption and withdrawal symptoms • turned off Mr A’s oxygen and did not communicate the reasoning behind it to the family • took too long to investigate Mrs A’s complaint and did not respond to all of her concerns
112. We appreciate how the poor communication around Mr A’s heart failure contributed to Mr A and his family not being aware of his prognosis, or the deteriorating nature of his condition. We also recognise that, as Mrs A suggested, they lost an opportunity to make Mr A more comfortable.
113. We are very sorry to hear how difficult it was for Mr A to stop drinking with no advice and support. We do not underestimate the distress he and Mrs A would have experienced as a result.
114. Mrs A told us she felt the poor care provided to Mr A was caused by his drinking problem. We recognise her concerns. However, we do not think that was the case because we can see the Trust did not consider Mr A’s drinking problem adequately. This suggests that Mr A’s alcoholism was not the driver behind the care he received. That being said, we do not doubt how these events caused her to lose faith in NHS.
115. Mrs A also told us the issues around turning off oxygen caused Mr A a lot of discomfort and distress. She says he died with no dignity.
116. We recognise that despite active treatment on arrival in hospital, Mr A was extremely frail, remained acutely unwell and was approaching the end of his life prior to the oxygen being stopped. The Trust’s ITU had quoted a likely mortality of 85% - sadly, this indicates that it was more likely than not that Mr A was going to die.
117. Our A&E adviser explained that the hypoxia and agonal breathing Mr A experienced were mainly due to his deterioration, which was not due to by a failing by the Trust. They said however, that stopping the oxygen would have had a minor contribution towards these symptoms. We do not doubt this would have cause Mr A and his family additional distress at what was a naturally distressing time for them.
118. We also do not doubt the frustration the complaint handling caused Mrs A. We can understand how this frustration would have impacted her ability to grieve for Mr A, and hoe it prolonged this process.
119. We are very sorry to hear Mrs A experienced the above failings we identified. We make recommendations below to address these.