Oxygen assessment
19. Mrs H says the Trust did not complete an oxygen assessment to diagnose her husband or give oxygen treatment.
20. The records show the Trust’s did two at home oxygen assessments. The first was on 6 January 2022. During this assessment his oxygen levels on room air were 7.4kPa (this is a measurement of the amount of oxygen in the blood). At the second, on 21 January, his oxygen levels on room air were 8.5kPa. The Trust decided Mr H was not eligible for at home oxygen therapy.
21. BTS guidelines says doctors should start home oxygen therapy for patients with oxygen levels below 7.3kPa on room air. Our adviser confirmed Mr H was not eligible under the BTS guidelines for at home oxygen.
22. The Trust did two oxygen assessment for Mr H. On each occasion his oxygen levels were above 7.3kPa on room air. Therefore, we find the Trust acted in line with BTS guidelines when not prescribing Mr H at home oxygen.
23. We can understand why Mrs H has queried if her husband should have had an oxygen assessment. We hope our report helps explains that he did have two assessments in January 2022 at which he was above the threshold for at home oxygen therapy. We do not uphold this part of Mrs H’s complaint.
Lung function
24. Mrs H says the Trust delayed doing lung function tests which meant her husband was not eligible for antifibrotic treatments which could have prolonged his life.
25. For context, these events were towards the end of the COVID-19 pandemic, when Trusts were still experiencing pressures and backlogs on tests and services due to the increasing and unexpected demand caused by the pandemic.
26. GMC guidelines say doctors must ‘promptly provide (or arrange) suitable advice, investigation or treatment where necessary’.
27. The Trust’s respiratory consultant reviewed Mr H on 1 November 2021 and referred him for lung function tests. This was in line with GMC guidance as it was referring him for investigations to assess his condition. The Trust did these tests on 11 January 2022. There is no specific guidance to say what ‘prompt’ means in this specific scenario. Our adviser said the two-month wait was not unusual given the backlog caused by COVID-19. They did not find anything that meant the Trust should have seen Mr H sooner.
28. The tests showed Mr H’s lung function was 41% when measured against predicted values of someone who does not have lung disease. The Trust decided Mr H was not eligible for antifibrotic treatment.
29. NICE guidance (CG163) says antifibrotic treatments can be given ‘for treating idiopathic pulmonary fibrosis in people with FVC [forced vital capacity – a measure of the amount of air a person can forcefully exhale] between 50% and 80% of predicted’. Mr H’s lung function was 41% in January. The Trust’s decision to not prescribe antifibrotic treatment was in line with NICE guidance.
30. Mrs H says she thinks the Trust should have referred her husband for lung function tests in August 2021 after his original CT scan. She queried whether he would have been eligible for treatment had that happened.
31. The Trust saw Mr H in its emergency department in July 2021 and, following a CT scan in August, it referred him to the respiratory team. GMC guidance says to ‘refer a patient to another suitably qualified practitioner when this serves their needs’. In the emergency department clinicians are specifically treating patients with life threatening and emergency conditions. Although Mr H was poorly, he was not in a position where his condition was immediately life threatening. Referring him to the respiratory team was in line with GMC guidance.
32. NICE guidance on diagnosing lung disease says ‘assess everyone with suspected idiopathic pulmonary fibrosis by:
• taking a detailed history, carrying out a clinical examination […] and performing blood tests to help exclude alternative diagnoses, including lung diseases associated with environmental and occupational exposure, with connective tissue diseases and with drugs and • performing lung function testing (spirometry and gas transfer) and • reviewing results of chest X‑ray and • performing CT of the thorax (including high-resolution images)’.
33. The Trust had performed a CT scan, which was needed to refer him to a respiratory specialist in order to rule out other diagnoses and perform other tests such as lung function as per the NICE guidance. The CT scan report itself also recommended that course of action.
34. It may be helpful for Mrs H to know our adviser said that, based on research on how quickly someone’s lung function declines with pulmonary fibrosis, it is unlikely Mr H would have been eligible for anti-fibrotic treatment even if he had lung function tests in August 2021. This is because he would have likely still scored under 50% on his lung function tests.
35. Overall, the Trust did not delay referring Mr H for lung function tests. When he did have these tests, its decision that he was not eligible for antifibrotic treatments was in line with NICE guidance. We therefore do not uphold this part of Mrs H’s complaint.
Sharing diagnosis
36. Mrs H says the Trust did not tell her husband that he had pulmonary fibrosis during his respiratory appointment on 1 November 2021. She says he only found out about this when speaking to his GP in December 2021.
37. GMC guidelines say that when sharing information with patients’ doctors must communicate effectively. They ‘must give patients the information they want or need to know in a way they can understand’.
38. The records from the appointment on 1 November give little detail about what was discussed. The only information documented was Mr H’s clinical observations and a plan for treatment and further tests
39. In advance of that consultation the Trust had sent Mr H a pre-appointment questionnaire. It asked Mr H if there were any specific questions he wanted the consultant to answer. Mr H said he wanted to know ‘will my condition get better, do I need meds if so for how long, should I keep going to work’.
40. The Trust’s clinic letter from that appointment, sent to Mr H’s GP, included a diagnosis of ‘interstitial lung disease’ (an overall term covering a number of conditions including pulmonary fibrosis). The consultant also said in their letter ‘I think there is coexisting obstructive airways disease due to likely smoking in an addition to a UIP pattern ILD [a pattern of scarring]’. The Trust did not send a copy of that letter to Mr H.
41. Mr H’s GP records also shed light on when he found out about his diagnosis. When his GP reviewed him on 8 December, they told him he had lung disease ‘as per [clinic] letter 1/11/21’.
42. The Trust told us it had not given Mr H a diagnosis as it was unclear at that time. However, the Trust’s clinician was confident enough to write it as a diagnosis in the clinic letter. Our adviser said there was no reason for the Trust not to explain the diagnosis to Mr H in November 2021 based on the evidence it had.
43. On the balance of probabilities, the Trust did not share Mr H’s diagnosis with him during its appointment in November 2021. We think it more likely Mr H first became aware during his appointment with his GP on 8 December. We find the Trust did not act in line with GMC guidance to give Mr H the information he wanted or needed.
False reassurances
44. Mrs H says that in September 2021 a junior doctor falsely reassured her husband he ‘had nothing to be worried about’ and that ‘he was going to live’.
45. The Trust said in its complaint response that it ‘noted there was some false reassurance given to you by a junior doctor’. The Trust was unable to identify who had made the telephone call and said that ‘it is with regret that you were given false reassurance as the ultimate diagnosis was that of a progressive disease. The diagnosis at this time was unclear’. It said saying ‘there is nothing serious to worry about’ would not have been a reasonable reassurance to give at the time, but it would have been reasonable to communicate that it did not have a clear diagnosis.
46. In addition to the GMC guidance cited above, it also says ‘You must work in partnership with patients, sharing with them the information they will need to make decisions about their care, including: their condition, [and] its likely progression […]’.
47. There is nothing in the records to suggest an appointment took place in September, or a note of any telephone call.
48. Given the lack of information in the records we asked the Trust to shed some light on what happened. The Trust said ‘We regret that false assurances were given by a junior doctor and recognise the negative impact that this had on both the patient and their family’.
49. On the balance of probabilities, we are persuaded by Mrs H’s account of what the Trust told Mr H. We note the Trust does not dispute what Mrs H said and appears to acknowledge a junior doctor gave Mr H false reassurances. We understand that at times junior doctors will make mistakes. But if they were unsure about Mr H’s diagnosis or prognosis they should have said as much rather than providing reassurances. We find that giving those reassurances, which were unfounded, was a failure to give accurate information in line with GMC guidance.
Complaint handling
50. Mrs H says the Trust delayed responding to her complaint and took a significant amount of time.
51. Our NHS Complaint Standards say that organisations should ‘respond to complaints at the earliest opportunity and consistently meet expected timescales for acknowledging a complaint’. They should ‘give clear timeframes for how long it will take to look into the issues, taking into account the complexity of the matter’.
52. Mrs H complained to the Trust through her MP in February 2022. She also complained directly via its complaint team on 8 March 2022. The Trust responded to Mrs H’s MP in May 2022 with a brief explanation of events from January 2022. It does not appear to have responded to Mrs H directly at that time, but noted in the email to her MP that she had shared her outstanding concerns and asked the Trust to investigate them.
53. Having received no response Mrs H contacted us in July 2022 and we asked the Trust to respond to her. Mrs H also sent further concerns to the Trust in September 2022. The Trust provided its response to Mrs H on 6 April 2023. This was one year and one month after she first raised a complaint.
54. The Trust explained that as there were concurrent enquires from Mrs H and her MP it caused confusion in providing a response. We can understand that the complaint coming from two sources may have made dealing with it slightly more complicated. But when the Trust responded to her MP it was aware it needed to investigate Mrs H’s complaint. It knew there was more to do.
55. Investigating a complaint will take some time. But we have seen very little evidence of the Trust taking action to investigate Mrs H’s complaint from May 2022 until early 2023. Neither did the Trust keep Mrs H up to date during that time with any reasons for the delay. It was able to respond to Mrs H’s MP quickly, but there does not appear to be any explanation as why it also could not respond to her. It also knew Mrs H still needed a response when we contacted it in July 2022 and when she returned to them in September 2022. There does not appear to be any evidence the Trust told her about any delays during these times.
56. The Trust dealt with Mrs H’s MP as a priority but neglected to give the same attention to the issues she had raised on her own behalf. In not dealing with Mrs H’s complaint promptly, nor setting clear timescales, it has not followed the NHS Complaint Standards. We find this was a failing.
57. We note The Trust’s complaint manager called Mrs H in February 2023, one year after she raised her complaint, and responded to her complaint one month later.
Record keeping
58. Mrs H did not complain specifically about record keeping. However, through our investigation we have seen instances where the Trust’s lack of good record keeping has made it harder to give clear explanations to Mrs H about what happened. GMC guidance says doctors ‘must keep clear, accurate and legible records.’. The Trust did not record at all the conversation a junior doctor had with Mr H about his prognosis, nor did the consultant record what they discussed with Mr H in November 2021. That was not in line with GMC guidance.
Impact
59. In this section of the report, we consider the impact the failings had on Mrs H and her husband.
60. We found the Trust gave Mr H false reassurance about his condition. Clear communication with patients is important so that they are fully aware of their condition, likely progression, uncertainties and options for treatment. Mr H was understandably reassured when the Trust told him he had nothing to be worried about.
61. In December 2021 Mr H found out about his diagnosis and poor prognosis. While that would always have been distressing news to know about, we find the Trust’s failing made that distress worse. Bad news can be unexpected. But the bad news for Mr H must have come as a complete shock to him and his family given the Trust had said he had nothing to worry about, and he was being told about this by his GP and not the Trust where he would have had the chance to ask the consultant important questions. He had no reason to believe anything was seriously wrong with his lungs. We find this likely caused Mr H and his wife significant distress.
62. We also think the Trust’s failure to share the diagnosis with Mr H in November 2021 had a negative impact on him.
63. Mrs H told us that her husband would have stopped work sooner if he had known what his diagnosis was. She said that although he was feeling unwell, because he did not know he was seriously ill he decided to push through regardless of his breathing and tiredness problems.
64. Mr H wanted to know during his appointment on 1 November if he was still able to work. Knowing his diagnosis at that time would have helped him think about that. He would have been able to ask his consultant follow-up questions. In December 2021, when he did find out about his diagnosis, his GP signed him off work as he was breathless and tired.
65. The combination of the Trust telling Mr H in September that he had nothing to be worried about, and not sharing his diagnosis during his November appointment, meant Mr H was unable to make informed decisions about how fit he was to work. We find that if the failings had not happened Mr H would have been in a better position to make informed life decisions and, on the balance of probabilities, he would likely have chosen to stop work in November 2021.
66. The Trust’s complaint handling also had an impact on Mrs H.
67. Mrs H came to the Trust for answers, and it appears to have taken the Trust a long time to respond. Once the Trust’s complaint manager spoke to Mrs H in February 2023, they gave a response one month later. While it may not have been able to give a comprehensive response quite that quickly from the start, particularly as Mrs H raised some further issues later, we find the Trust avoidably caused a roughly nine-month delay in responding to her complaint.
68. This delayed Mrs H getting closure on these matters and prolonged her distress when she was grieving following the loss of her husband. We are sorry to see how difficult these events have been for her.
69. We are pleased to see the Trust has apologised to Mrs H for the false reassurances it gave her husband. Apologising for what happened is part of putting things right.
70. But there is more it should do. It has not yet apologised for the impact of not sharing the diagnosis in November 2021, nor for its delayed complaint handling. We find an apology is not sufficient to put right the additional distress the Trust’s failings caused Mrs H.
71. In relation to service improvements for the false reassurances, the Trust told us it is confident that ‘through support, coaching, and their increasing levels of experience, should they [the junior doctor] be faced with a situation such as this again, they would react more appropriately.’ We do not think this goes far enough to stop such a situation happening again. The Trust needs to do more to learn from this and make improvements.
72. Since Mrs H’s complaint the Trust has taken steps to improve its complaint handling such as making improvements in its system to make sure both MPs and complainants receive a response suitable to their needs. The Trust has also made improvements to its communication where complainants now receive confirmation of next steps, and updates where there are delays, giving clear timescales. We think this shows the Trust has learnt from these failings. We think the Trust needs to share these improvements with Mrs H.
73. The Trust needs to address what we saw in respect of its record keeping. The fact that its poor record keeping made it harder for it, and us, to establish exactly what had happened only serves to highlight the importance of making complete and accurate notes. The Trust needs to learn from this and make improvements.
74. Throughout this case we saw serious poor communication failings, which either caused or prolonged distress for Mr H, Mrs H and their family. These failings were all avoidable.
75. In summary, we find the Trust has taken some steps to put right some of the impact of its failings, but we think there is more it should do to complete this. We therefore partly uphold Mrs H’s complaint and make recommendations below.