Investigations to diagnose Mr H’s condition from November 2015 to July 2021
26. The Law says a person needs to make their complaint to us within one year of becoming aware of the problem. We cannot investigate complaints brought to us after one year, unless we consider there is a good reason to do so.
27. On this part of her complaint, we discussed this with Mrs H to understand the reasons why she could not do so. We also considered how long St Peter’s Trust took to respond to Mrs H. Having done so, we saw Mrs H raised this matter outside of our time limit and we did not see reasons to set aside our time limit. For this reason, we decided not to consider this matter further.
28. First, in paragraphs 28 to 46, we explain Mrs H’s date of awareness on this matter and when she complained to us. In paragraphs 47 to 51, we explain why we did not see reasons to set aside our time limit.
29. Mr H was under the care of the respiratory or cardiology team at St Peter’s Trust in at least some capacity from November 2015 through to staff diagnosing his PA malformation, and when he died in March 2023. We recognise Mrs H links the timing of Mr H’s diagnosis to his death.
30. That said, we saw there are other problems she links to his delayed diagnosis she was aware of earlier. This means we saw she was aware there was a problem she could have complained about earlier.
31. This began with Mr H’s breathlessness which, as Mrs H told us, got progressively worse from 2015. This was despite different consultants from St Peter’s Trust seeing him but not finding a cause. She explained his worsening breathlessness meant he was unable to play golf by 2019, and he was unable to do activities with his family on a holiday that summer.
32. Despite further changes in the staff reviewing him in 2021, including a cardiologist ending their input in his care in April, Mrs H told us all these staff still found nothing to explain Mr H’s worsening breathlessness.
33. Given the lack of results at this point, and the cardiologist referring Mr H back to the respiratory team, who planned a telephone consultation in November, Mrs H told us she and Mr H did not consider this was good enough. They wanted a consultant who would take more action and see Mr H in person. It was on this basis, and because Mr H’s breathing was getting worse, they decided to seek private treatment.
34. While Mrs H may not have been aware at this point Mr H might die, she was aware he had health problems which had impacted on his daily living activities. She felt staff had not acted as she expected to find a cause and address this.
35. So, by the end of April 2021, we consider she was aware she had cause to complain about the care Mr H had under the teams at St Peter’s Trust to that point. Mr and Mrs H’s decision to seek private care supports that they were dissatisfied with the care Mr H received from St Peter’s Trust at this stage.
36. We consider their awareness staff missed making a potential diagnosis was confirmed in July 2021. This is when Mrs H told us Mr H saw a private consultant and they did tests.
37. Mrs H explained the private consultant considered and made other diagnoses. This included ILD and hypersensitivity pneumonitis. They then prescribed Mr H medicines for these conditions and planned that NHS colleagues at Guy’s Trust and St Peter’s Trust should oversee his ongoing management jointly.
38. From his care records, we saw the private consultant discussed their views on Mr H’s diagnosis based on the tests they did in a clinic appointment he and Mrs H attended on 29 July 2021.
39. These were not diagnoses staff at St Peter’s Trust made and treated while Mr H was under their care. So, on 29 July 2021, we saw Mrs H became aware staff at St Peter’s Trust had not considered these diagnoses and the medicines to manage the breathlessness Mr H experienced.
40. We have separated Mr H’s care to this point from the joint care he received from August 2021 with teams at Guy’s Trust and St Peter’s Trust. We consider this is a distinct and separate period of care, and Mrs H became aware of a delay in staff reaching the correct diagnosis during this care later. We explain why below.
41. With new diagnoses and a treatment plan in place under the joint care of St Peter’s Trust and Guy’s Trust in August 2021, Mrs H hoped this would help improve Mr H’s condition. We can see how she reasonably had this expectation given the changes.
42. However, Mrs H explained to us, over time, she saw this was not helping. By November 2022, Mr H’s breathlessness meant he was dependent on supplemental oxygen, and he needed a mobility scooter to move around. She said it was at this time, another consultant at St Peter’s Trust called to say staff needed to consider other causes to explain his breathlessness.
43. We saw this resulted in staff doing tests first to assess for chronic venous thromboembolism and then for PA malformation. On 18 January 2023, staff found Mr H’s PA malformation, and they started planning further tests to investigate how they might treat it. This is the condition Mrs H complains staff delayed finding.
44. At this point, we consider she would have become aware, despite the change in diagnosis and management of it from August 2021, staff still did not find the condition causing Mr H’s worsening breathlessness. She would have become aware the symptoms he continued to have may have been explained by this previously undiagnosed and untreated condition.
45. Therefore, she had a cause to complain about the later joint care he received under Guy’s Trust and St Peter’s Trust at this time. This is a later date of knowledge regarding a delayed diagnosis during this period of care.
46. As we go on to explain, unlike Mr H’s care up to July 2021, Mrs H raised these concerns with St Peter’s Trust and Guy’s Trust more promptly after she became aware of them. The length of time the two organisations took to reply to her mainly explains the passage in time between her date of knowledge on this matter and her complaint to us. This also applies to her complaint about Mr H’s discharge from hospital in February 2023.
47. Mrs H raised her complaint with us on 27 March 2024. This means she raised her concerns about Mr H’s care up to July 2021, and the delay in diagnosis during this period, around one year and eight months outside of our time limit.
48. From when she was aware of these issues on 29 July 2021, Mrs H did not complain to St Peter’s Trust about them within the 12-month time limit set out in regulation 12 of the NHS Complaint Regulations. She did so almost one year and ten months later, on 21 May 2023. This is a significant proportion of the approximate two year and eight-month passage in time between her date of knowledge and raising this matter with us.
49. We appreciate, after raising her complaint, there was a seven-and-a-half-month period local resolution was actively ongoing at St Peter’s Trust, and there was little Mrs H could do to progress her complaint. That said, this was much shorter than the period it took Mrs H to first raise these issues with St Peter’s Trust.
50. We asked Mrs H why she did not complain to St Peter’s Trust sooner. Mrs H told us she and Mr H felt desperate and confused about why, despite seeing consultants at St Peter’s Trust around the time, Mr H was getting sicker. She said maybe she or Mr H should have complained. She could not explain why they did not and put this down to exasperation about Mr H’s situation.
51. We did not see these factors explain Mrs H not being able to make a complaint at the time. We recognise Mr H was getting sicker and this would have been difficult. That said, we saw Mr and Mrs H were arranging private healthcare to try and resolve things. Therefore, we consider they would have had the ability to raise a complaint to try and resolve things through these means.
52. Having considered the above, the long period it took Mrs H to raise this matter with St Peter’s Trust mainly explains why she complained to us outside of our time limit. As we cannot see good reasons to explain this passage in time, we decided not to set aside our time limit and consider this matter further.
53. We recognise Mrs H is likely to find our decision disappointing.
54. We hope we clearly explained the reasons for our decision. We hope this helps assure Mrs H we only reached our decision after carefully considering the circumstances and what she told us.
Investigations to diagnose Mr H’s condition from August 2021
55. In her complaints to St Peter’s Trust and Guy’s Trust, Mrs H said the medicines Mr H’s private consultant prescribed, and NHS staff continued, did not improve Mr H’s condition. She said the amount of supplemental oxygen he needed to support his breathing increased. She complained staff did little to address this other than advise Mr H to exercise.
56. She complained it was not until November 2022 when a consultant at St Peter’s Trust started to consider his breathlessness was not associated with a lung condition. Among the investigations the consultant planned to assess this was Mr H’s bubble echocardiogram.
57. Mrs H said this scan showed his PA malformation and the cause of his breathlessness. She complained it took staff too long to do this scan and reach this diagnosis.
58. In its complaint process, St Peter’s Trust said Mr H’s private consultant diagnosed him with ILD and hypersensitivity pneumonitis. After that, he started treatment for these conditions at hospitals ran by Guy’s Trust.
59. St Peter’s Trust said its consultant who contacted Mr H in November 2022 had reviewed a CT scan he had (at Guy’s Trust in February 2022). They considered his breathlessness was not consistent with the minimal indications of ILD they saw in the scan. Therefore, they considered other causes that might explain his breathlessness.
60. It was on this basis its consultant arranged a CT pulmonary angiogram (CTPA), which Mr H had on 30 November. This scan ruled out chronic venous thromboembolism. Therefore, the consultant followed up to arrange a bubble echocardiogram. It added the average waiting time for this kind of complex scan is eight weeks. This meant St Peter’s Trust saw no delay in Mr H having it (at Guy’s Trust) on 18 January 2023.
61. St Peter’s Trust said PA malformation is a rare condition. It added there was no evidence of this condition in the various scans Mr H had before his bubble echocardiogram.
62. In its complaint process, Guy’s Trust also noted the diagnosis Mr H received privately and the steroids and immunosuppressants his private consultant prescribed. As part of his treatment plan at Guy’s Trust afterwards, its staff advised him to reduce his steroids in November 2021. They also requested the most recent echocardiogram he had at St Peter’s Trust.
63. Staff also arranged for him to have a CT scan and lung function test in the day review clinic in February 2022.
64. Guy’s Trust said the tests Mr H had in the day review clinic showed improvement relative to the baseline scan he had in 2021. Therefore, staff concluded he was responding to the medications he was taking. Staff decided to continue with them. Guy’s Trust also noted a further echocardiogram he had at St Peter’s Trust in April 2022 was ‘normal’.
65. Following the considerations of the consultant at St Peter’s Trust (which we explained in paragraph 58 and 59), Guy’s Trust agreed Mr H should have his CTPA. Guy’s Trust agreed his CTPA ruled out chronic venous thromboembolism.
66. Guy’s Trust added further staff consultations afterwards, in which staff noted Mr H was becoming more breathless, led to his referral for a bubble echocardiogram. The member of staff who performed this test saw his PA malformation.
67. Guy’s Trust did not consider staff delayed diagnosing Mr H’s PA malformation. It said his scans in 2021 suggested hypersensitivity pneumonitis. Later scans indicated improvement in his condition when he received treatment for it. It added the PA malformation by itself would not have caused the deterioration Mr H experienced in his condition.
68. We saw staff acted in line with guidelines in diagnosing Mr H and we found no avoidable delay in reaching the diagnosis Mrs H complains about.
69. Sections 15 and 16 in Good Medical Practice say doctors should do the following in assessing, diagnosing, and treating patients:
• adequately assess the patient’s conditions, taking account of things like the patient’s history, symptoms, and their views • promptly provide suitable investigations or treatment • provide treatment based on the best available evidence.
70. When NHS staff took over Mr H’s care again, from review of his records, we recognise he had a treatment plan in place following his private consultations in June to August 2021. That is, his steroids and immunosuppressants for ILD and hypersensitivity pneumonitis.
71. We saw Mr H’s private consultant had planned for him to start initially on pulsed methylprednisolone (a synthetic glucocorticoid steroid). They planned to step this treatment down later to prednisolone supplemented by mycophenolate (an immunosuppressant). This was alongside his ongoing supplemental oxygen.
72. Staff at Guy’s Trust reviewed his progress in a telephone clinic appointment on 8 November 2021. His clinic letters show staff noted the history we set out above and the treatment plan his private consultant arranged. In the appointment staff noted Mr H reported improvement in his breathlessness since starting his steroid medications.
73. On this basis, staff planned for him to reduce his daily dose of prednisolone (30mg). They advised him to lower his dose by 5mg every two weeks until eventually getting down to 10mg, which would become his daily maintenance dose. Staff planned to review him in Guy’s Trust’s day review unit in March 2022.
74. Our physician said, based on Mr H reporting improvement, there were reasons to support this management plan.
75. We saw this plan was in line with the criteria we explained in paragraph 68 from Good Medical Practice. Having taken account of Mr H’s history and the progress concerning his symptoms which he reported, staff provided further treatment our physician said was suitable based on the evidence available to them.
76. Mr H’s care records show he attended the day unit for review in February 2022. He reported his breathing had been stable while managing to wean down his daily prednisolone to 10mg. Our physician said the results of the CT scan he had relative to previous ones showed improvement too.
77. Based on his progress, we saw staff asked Mr H to reduce his steroid dosage further. They noted he should reduce it by 1mg each month until reaching a daily maintenance dose of 7mg. Staff planned to review him in six months. Our physician said the evidence from this review about Mr H’s condition and the changes since his last review supported the plan staff made.
78. Like the review staff did in November 2021, we saw they devised this treatment plan in line with Good Medical Practice. It was based on the evidence about Mr H’s condition at the time including what he said about it, and our physician said the evidence available supported their plan.
79. On 17 May 2022, one of St Peter’s Trust’s consultants spoke to Mr H in a telephone consultation. Mr H reported he had reduced his prednisolone as advised, and he was taking 7mg daily. However, he said his breathlessness was now worsening. He could now only tolerate walking up to 15 yards.
80. In response to this, the consultant asked him to increase his dose of prednisolone back to 10mg. Referring to his history of previous breathlessness and his treatment, they saw this dose had improved his symptoms before.
81. The consultant also arranged for him have urgent further lung function tests within two weeks, which we saw he had on 30 May. Our physician said these tests showed Mr H’s oxygen saturation levels were 91% to 94% at rest. They dropped to 79% when he began walking.
82. Like his previous review, we saw staff based these actions on the evidence about Mr H’s condition at the time including what he said about it. Our physician said there were reasons supporting continuation of steroids, with the amendments staff made to his regime. We saw how increasing them to a dose which previously improved his condition might help, and why staff should allow time to see if the increased dose achieved this.
83. Therefore, we saw staff decided on the next steps in Mr H’s care here in line with the criteria we explained in paragraph 68.
84. When staff next reviewed him on 30 August, Mr H reported his breathlessness was not improving. This was in a telephone consultation with staff from Guy’s Trust.
85. In response, while continuing to take his steroids, they arranged for him to have a review with his local ambulatory oxygen team and another CT scan to investigate the cause. These appointments and investigations took place in September. The staff who did the scan said it did not show changes relative to previous scans and it did not show any explanation for his breathlessness.
86. A consultant at St Peter’s Trust followed up on this in a clinic appointment on 21 September. Noting the above results, they felt they needed to arrange different investigations for Mr H to look for other causes of his breathlessness. This included the possibility of thromboembolic issues. Therefore, they planned a doppler ultrasound. If that did not provide any answers, they considered doing a CTPA.
87. The consultant arranging these scans noted, because Mr H also had chronic kidney disease and may need dialysis, a CTPA may not be appropriate. Our physician said the use of contrast solutions in these scans risk making this disease worse and this was a valid concern.
88. However, because a CTPA might be necessary to establish the cause of his breathlessness, we saw the consultant wrote to Mr H’s nephrologist, based at a different NHS trust, for advice. This was about whether a CTPA was possible. In the meantime, they explained they would arrange the doppler ultrasound.
89. Our physician said these were important scans to arrange, in particular, Mr H’s CTPA. This scan had the potential to diagnose other causes of his breathlessness.
90. We saw Mr H had his CTPA on 30 November. Our physician said the need to seek advice from Mr H’s nephrologist about the risks of the scan explained this elapse in time. From his records, we saw his nephrologist replied and advised Mr H also needed to pause medications for his kidney condition prior to having his CTPA.
91. So, we saw no avoidable delay in Mr H having his CTPA given the extra steps staff needed to take in arranging it.
92. The consultant at St Peter’s Trust reviewed Mr H again through a telephone consultation on 13 December. Within that consultation, they explained his lung function tests on 1 December showed little change to the lung function tests he had earlier in the year.
93. They had also reviewed his CTPA. They noted this showed no evidence of pulmonary emboli and his lungs looked the same when compared to other previous CT scans. Therefore, they still saw no explanation for his breathlessness.
94. Given this lack of explanation, the consultant arranged for him to have a bubble echocardiogram to investigate other causes. As Mrs H explained in her complaint, Mr H had this scan on 18 January 2023. This is when the echocardiographer saw PA malformation and they shared this result with the consultants overseeing his care.
95. Based on the lack of explanations for Mr H’s breathlessness following his CTPA, our physician said the bubble echocardiogram was a further relevant scan to do. They did not see the period Mr H waited for this kind of scan was longer than they would expect.
96. So, from August 2022, we saw staff acted on the evidence Mr H reported about his breathlessness getting worse. They arranged further investigations which our physician said were suitable in the circumstances to try and establish the cause. After reviewing the results of each investigation, our physician saw no avoidable delays in arranging the next one until the bubble echocardiogram where staff identified PA malformation.
97. We saw all this is in line with Good Medical Practice, and therefore no avoidable delay in staff diagnosing Mr H’s PA malformation.
98. We can only imagine how distressing it must have been for Mrs H when Mr H had so many tests and changes to his treatment, but this did not improve his breathlessness.
99. We hope we have clearly explained why we saw staff acted in line with guidelines. We hope these explanations provide Mrs H some assurance about the standard of care staff gave her husband and the investigations they did into his condition.
Mr H’s discharge from hospital at St Peter’s Trust on 15 February 2023
100. In her complaint to St Peter’s Trust, Mrs H said staff decided to discharge Mr H from hospital even though he had low oxygen levels. She said he should have remained there. Alternatively, staff should have transferred him to one of Guy’s Trust’s hospitals while he awaited the CT scan staff had planned for 3 March to further investigate his PA malformation.
101. Mrs H said Mr H did not have the facilities at home to support him in an emergency. The oxygen equipment he had did not deliver highflow oxygen. She said going home was not the best option for him because he was likely to die if he went home.
102. Responding to her complaint, St Peter’s Trust said one of its cardiologists decided Mr H should go home while he waited for his planned CT scan. St Peter’s Trust said he had extensive investigations during his hospital admission. None of them showed a treatable condition to improve his symptoms or prognosis.
103. St Peter’s Trust said, in patients with known lung disease, staff aim to keep their oxygen saturation levels above 85% and ideally around 88%. It said Mr H’s oxygen saturation levels were at this target before his discharge.
104. We saw staff decided to discharge Mr H in line with guidelines.
105. Our cardiologist said, from their review of Mr H’s records, he came to hospital on 7 February with acute conditions. This included an infection and fluid retention. Mr H also had increased breathlessness, which was chronic in nature and by this stage staff suspected was associated with his PA malformation.
106. Our cardiologist explained staff treated Mr H’s acute conditions with antibiotics and diuretic medicines. They said, and we saw staff at St Peter’s Trust noted this too, his suspected PA malformation was the main underlying cause of his breathlessness and lowered oxygen saturation levels. However, our cardiologist said his acute conditions also contributed to this.
107. With the treatment staff provided for his acute conditions following his arrival in hospital, alongside supplemental oxygen, our cardiologist said Mr H’s oxygen saturation levels improved. After initial treatments, these levels increased from as low as 64% to 92%. Between 11 and 15 February, they said his oxygen saturation levels remained above 96% (when not mobilising).
108. Our cardiologist added, at this time, Mr H’s records show he met the criteria in Annex D of the Hospital Discharge Guidance when staff should consider discharging a patient.
109. We saw annex D lists questions staff should answer about whether they can discharge a patient. If the answer to each question is no, they should consider discharging the patient. The questions staff should consider about patients are:
• do they require intensive treatment unit or high dependency unit care • do they require oxygen therapy or non-invasive ventilation • do they have national early warning scores (NEWS) greater than three (clinical judgment required in patients with chronic respiratory diseases) • do they have diminished level of consciousness where recovery is realistic • do they have acute functional impairment in excess of home or community care provision • are they in the last hours of their life • do they require intravenous medication • do they require intravenous fluids • have they had lower limb surgery in the last 48 hours • have they had thorax-abdominal/pelvic surgery in the last 72 hours • have they had an invasive procedure in the last 24 hours.
110. NEWS, which we refer to above, assess a patient’s breathing rate, oxygen saturation level, blood pressure, heart rate, level of consciousness, and temperature. Staff give each parameter a score between zero and three. A score of zero means the parameter is normal. Higher scores indicate the patient is more unwell.
111. Staff add up scores for each parameter to give a total score. They should add two to this score if they need to give a patient supplemental oxygen. A higher overall score means the patient is more unwell and at higher risk of deterioration.
112. We appreciate, as a patient with chronic breathlessness routinely needing supplemental oxygen, this would mean Mr H was likely to have higher NEWS.
113. Specifically on oxygen therapy, our cardiologist said Mr H had oxygen equipment at home. Therefore, as a patient with a chronic condition affecting his breathing who staff saw had this provision at home, and with no other factors which applied from the list in paragraph 108, this supported their decision to send him home.
114. Our cardiologist added supplemental oxygen in hospital was unlikely to improve Mr H’s oxygen saturation levels further at the time of his discharge. The appointment he had scheduled at Guy’s Trust for 3 March planned to take further steps to address the chronic and main underlying cause of his breathlessness.
115. In the context of his oxygen saturation levels improving during his admission, and Mr H having these outpatient investigations planned, our cardiologist said this supported the decision staff made to discharge him.
116. Having considered the evidence and advice, we saw Mr H met the factors described in the Hospital Discharge Guidance which meant staff could discharge him home. Staff considered these factors in Mr H’s case.
117. Of particular importance, staff noted he had oxygen equipment at home, they could not address the chronic cause of his breathlessness, but he had outpatient appointments planned soon to do so. Our cardiologist also said these were factors supporting their decision.
118. Therefore, we saw staff acted in line with the Hospital Discharge Guidance and we found no failing in them discharging Mr H.
119. We recognise Mrs H considers Mr H should have remained in hospital. We can only imagine how difficult the events at home on 2 March were for her.
120. We hope we have clearly explained why we saw staff acted in line with guidelines. We hope these explanations provide Mrs H some assurance about the decision staff made to discharge Mr H from hospital.