Medical treatment between 28 November 2023 and 30 January 2024
16. Ms R says clinicians did not respond to her concerns when she alerted them on 28 November 2023. She says after doctors admitted her mother to the Hospital they failed to identify the cause of her problems.
17. The Chest Pain Guideline explains how clinicians should assess and diagnose recent chest pain. It also provides guidance for healthcare professionals about how to manage symptoms. The PE Guideline explains how doctors should diagnose and treat PE.
18. Good Medical Practice says doctors must provide a good standard of care. This includes carrying out adequate assessments, taking account of the patient’s history and examining them if necessary. Doctors should also arrange timely treatment and appropriate investigations or referrals if needed. They must consult colleagues where appropriate.
19. The Endocarditis Guideline explains how clinicians should diagnose and treat endocarditis. This is the inflammation of the inner lining of the heart’s chambers and valves. It is usually caused by infection. Mrs R had a less common condition, NBTE, which is caused by blood clots forming in the heart. The Endocarditis Guideline explains how challenging NBTE is to diagnose. It stresses the importance of treating the underlying cause and to consider using anticoagulants.
20. Mrs R’s GP referred her to the Hospital’s cardiology team because of her symptoms of chest pain and breathlessness. On 28 November 2023 the nurse discussed Mrs R’s symptoms with a consultant cardiologist. Their advice was to arrange a myocardial perfusion scan which the nurse arranged. The nurse also advised Mrs R to seek emergency assistance if she had significant pain when resting or if her breathlessness continued despite resting.
21. The Rheumatology Adviser told us Mrs R’s symptoms suggested that her problems were related to her heart. They said it is important to note Mrs R’s history of heart disease and cancer. Clinicians were clearly aware of her history. In these circumstances it was right for the nurse to discuss a management plan with a consultant and then to arrange a cardiac scan. There is nothing to suggest any further investigations were needed at that point. The Cardiology Adviser agreed. This management was in line with the Chest Pain Guideline.
22. There is no evidence in the clinical records that Mrs R had any further contact with clinicians at the Hospital until her admission on 15 January 2024. Ms R recalled contacting the Hospital to ask about the planned scan and we have no reason to doubt what she said in this respect. But, we have seen no evidence to suggest that clinicians needed to change the management plan from November 2023.
23. Mrs R then attended hospital and was admitted on 15 January 2024, before the cardiac scan took place. Cardiology investigations focussed on breathlessness and a CT scan showed PE. This was a concern because she was already taking anticoagulants. Cardiology arranged echocardiograms and these revealed a mass in the right atrium (part of the heart).
24. The Cardiology Adviser said doctors identified from scans of the coronary arteries that Mrs R had PE. The doctors treated the PE in line with the PE Guidelines.
25. The Rheumatology Adviser told us that doctors would first consider infection (endocarditis) as the possible cause of Mrs R’s problems. This was even more likely because she had a pacemaker. Doctors were right to consider this first. They arranged the right tests and started her on antibiotics. This was also appropriate. When these failed to identify an infection the next thing to consider was a possible cancer.
26. The Rheumatology Adviser said, in hindsight we know the issue was an NBTE lesion, which was presumed to be lupus related, but this could not have been known at the time. It is generally only found at post-mortem and is extremely rare. The more common cause of such echocardiogram findings would be infection or malignancy (cancer). The Rheumatology Adviser said the team could have considered whether this was linked to lupus, but it was not a failing that it was not considered particularly as there was no obvious reference to any signs of lupus in the clinical records at the time. There was no requirement at this point to involve rheumatology.
27. Ms R also referred in her complaint to concerns about her mother’s kidney function. The Rheumatology Adviser said Mrs R’s kidney function worsened slightly during the first admission. The eGFR (estimated glomerular filtration rate) is a test that measures how well someone’s kidneys are working. An eGFR of 60 or more is considered normal. In February 2019 Mrs R had an eGFR of 67. In January 2024 her eGFR was between 40 and 50. This was slightly low. The Rheumatology Adviser said they would not expect any specific actions to be taken based on these results. By comparison her eGFR had dropped to 12 by the time she returned to the Hospital in March, which was a significant drop.
28. The discharge summary explains the focus was on excluding cancer and plans to repeat a CT scan and also organising several other investigations, one of which included looking for APLS (antiphospholipid syndrome) associated with Lupus and other haematological conditions. The scan only revealed clots and a lesion in the lungs, and it was recommended to repeat this in a few weeks (interval scanning). Mrs R’ postmortem concluded this was an infarction (dead tissue) of the lungs linked to a clot.
29. The Rheumatology Adviser said Mrs R’s platelet count was low (thrombocytopenia). The Cardiology Adviser explained that a variety of conditions can cause a low platelet count. Doctors should seek advice from specialist colleagues and in this case it was right to refer to haematologists.
30. Doctors rightly checked for all relevant blood disorders, including APLS. They arranged an ANA (anti-nuclear antibodies) test when discharging her from the Hospital. ANA are antibodies that are present in most people who have SLE. Lupus was not at the top of the list for possible causes of Mrs R’ problems, and it was right to look for more common possibilities first.
31. We find clinicians followed the Chest Pain Guideline, the PE Guideline and the Endocarditis Guideline. Doctors carried out appropriate assessments, arranged investigations and provided necessary treatment for Mrs R. They followed Good Medical Practice. We have seen no evidence to suggest clinicians should have done more either at the consultation on 28 November 2023 or during Mrs R’ subsequent admission to the Hospital.
Senior involvement and care co-ordination
32. Ms R says the Trust failed to appoint a doctor who would oversee her mother’s care. She says this meant her mother’s care was not properly co-ordinated.
33. The Quality Standard says consultants should be available for timely assessment and review. The frequency of reviews is based on clinical need. There should be clinical reviews at least each day, including at weekends, but not necessarily led by a consultant. There is no requirement in the Quality Standard that a specific named doctor should be responsible for co-ordinating a patient’s care in hospital.
34. The Cardiology Adviser told us there is clear evidence at all stages of Mrs R’s admissions that consultants were involved in decision making. The clinical records show that consultants from a range of different disciplines regularly reviewed Mrs R. The Cardiology Adviser said this goes well beyond any expectation of consultant review which typically requires review within 24 hours of admission and at least twice each week.
35. We have seen no evidence to suggest there was a lack of co-ordination in Mrs R’s care and treatment. As we explained above, her condition was difficult to diagnose, and this meant consultant cardiologists and haematologists were all involved in investigating and managing her health during her first admission. During the second admission, Mrs R also saw consultant rheumatologists, nephrologists and intensive care consultants.
36. We find clinicians followed the Quality Standard when they ensured that senior doctors regularly reviewed Mrs R. We have seen nothing to suggest her care was poorly co-ordinated.
Arrangements following discharge on 30 January 2024
37. Ms R says clinicians from the Hospital did not follow up on urgent instructions when they discharged her mother.
38. Doctors should have followed Good Medical Practice as explained earlier in this report. They should have arranged appropriate investigations
39. The clinical records include a detailed discharge summary dated 30 January 2024. This summarised Mrs R’s hospital admission. It also included instructions about follow up arrangements. Numerous specialist tests were sent, and these were to be followed up by the haematology team. The plan was for Mrs R to have anticoagulant medication and then a repeat echocardiogram in one month. A repeat CT scan was scheduled for three months’ time and there would be a follow-up clinic ‘as soon as possible’ and ‘within the next few weeks’ with a consultant cardiologist.
40. Both clinical advisers commented that a doctor produced a thorough discharge summary on 30 January 2024. This included appropriate follow-up with cardiology and haematology. The Cardiology Adviser told us the fact Mrs R’s health worsened after her discharge was unfortunate, but it did not indicate any failure by clinicians.
41. We find doctors followed Good Medical Practice. They arranged appropriate investigations, and it was unfortunate that Mrs R became acutely unwell before they could take place.
Blood test on 24 February 2024
42. Ms R says the results of an abnormal blood test were available to clinicians from 24 February 2024 and appear to have been overlooked. She believes this was due to incorrect analysis of the results.
43. The SLE Guideline explains how doctors should treat SLE. It recommends four different tests that should be carried out to check for SLE. These are: blood tests (including serological markers), ANA tests, APLS tests and tests to check for the presence of anti-dsDNA antibodies. The SLE Guideline also explains how SLE should be treated.
44. The clinical records show that clinicians took a sample of blood to test Mrs R for SLE when she left the Hospital on 30 January 2024. This led to an ANA test and the results of that test were available on 24 February. The results were not referenced in the records until Mrs R returned to the Hospital. The clinical records do not suggest that results were analysed incorrectly.
45. The Trust’s patient safety review described the ANA result as abnormal and suggested it should have been highlighted in the records.
46. The Rheumatology Adviser told us that when doctors readmitted Mrs R to the Hospital on 4 March 2024 her symptoms had changed significantly. She had oedema (a build up of fluid in the legs) and a rash. These symptoms had not been present during her previous admission. In fact, the records for the first admission are very clear there was no evidence of oedema. Had these problems been seen earlier then doctors would have suspected vasculitis (inflammation of blood vessels) which can be linked to SLE. In that scenario, rheumatologists would have been involved in her treatment during the first admission.
47. The records show that clinicians arranged relevant blood tests, an ANA test and an APLS test during Mrs R’s first admission. They did not arrange an anti-dsDNA test. The Rheumatology Adviser said anti-dsDNA tests would only usually be requested by rheumatologists, and they were not involved during the first admission. We do not consider this was a failing based on Mrs R’s presentation at the time.
48. The Rheumatology Adviser also told us Mrs R’s SLE would have been moderate to severe. They said the treatments recommended in the SLE Guideline were provided to Mrs R during her final hospital admission. These treatments take at least twelve weeks to make any meaningful difference to patients. A wait of around two weeks would not have had any effect on Mrs R’s illness.
49. The Rheumatology Adviser said it could be argued that the ANA should have been arranged and results interpreted sooner. But they do not consider that what happened fell below the SLE Guidelines.
50. We recognise this has been a source of frustration for Ms R. We find the clinicians at the Trust followed the relevant standard. We hope she is reassured that the issues relating to the ANA test would not have made any significant difference to her mother’s health.
1 March 2024
51. Ms R recalled that her mother attended an appointment on 1 March 2024 for a heart scan. She said a nurse was so concerned about her mother that she went to speak to one of the doctors. The doctor decided to send her mother home without carrying out any examination.
52. The doctor should have followed Good Medical Practice as explained earlier in this report.
53. There is limited evidence in the clinical records about what happened at the appointment on 1 March 2024. The Trust stated in its patient safety review that clinicians missed an opportunity to readmit Mrs R to the Hospital sooner. It is unclear how it reached this view based on the clinical records.
54. The Cardiology Adviser told us that outpatient appointments are not tied to any facilities for emergency assessment and reporting of appointments takes place sometime afterwards. They said it is in line with Good Medical Practice to delay even urgent planned outpatient assessments until a few days after an investigation. If a patient’s health deteriorates then doctors should consider an urgent admission. But there is no evidence to suggest that at this appointment such action was necessary.
55. There is no evidence in the clinical records to show that Mrs R was acutely unwell when she attended the appointment in question. We appreciate this does not correspond with Ms R’s recollection. Without any independent evidence we do not find that what happened on this occasion fell below Good Medical Practice.
Communication
56. Ms R complains that communication between the doctors and the family, and also with her mother’s GP, was below the standard required. She says she asked to speak to a doctor several times during her mother’s first admission and a doctor did not discuss what was happening at any point.
57. Good Medical Practice says doctors must be considerate and compassionate to those close to the patient and be sensitive and responsive in giving them support and information. Doctors must promptly share relevant information about patients with others involved in their care. They must also give patients the information they want or need in a way they can understand.
58. The clinical records show doctors explained investigation results to Mrs R on one occasion during the first admission. They do not show any evidence that Ms R asked for information that was not then shared with her. There is no record of doctors having any discussions with Ms R about her mother’s care and treatment during this admission.
59. Both clinical advisers were clear that the discharge summary from 30 January 2024 was comprehensive. The Trust sent a copy of this to Mrs R’s GP. The next day a nurse emailed the Trust to explain that Mrs R had started on warfarin and would need to attend a community warfarin clinic.
60. The clinical records show that a clinician called Ms R on 8 March 2024. They explained how Mrs R had a poor prognosis but doctors would do all they could. Later that day a different clinician called Ms R to discuss end of life care.
61. We can appreciate why Ms R considers doctors were not telling her what was happening during her mother’s hospital admissions. Clearly, this was a distressing time for her. As we have explained earlier in the report, Mrs R had a complex illness, and doctors did not make a diagnosis until a few days before her death. This meant they could not explain the reasons for her illness.
62. But there is little evidence that doctors told Mrs R, or her daughter, how they were investigating her illness and what their plans for treatment were. This was particularly the case during her first hospital admission. We have no reason to doubt what Ms R said about the attempts she made to obtain information.
63. The Trust accepted in its patient safety review that communication with Mrs R’s relatives could have been better, especially during the first admission.
64. We find doctors did not communicate enough with Mrs R and her family, particularly about uncertainties relating to her diagnosis. They did not follow Good Medical Practice in this respect by failing to share information they needed to know. But we can see no evidence to suggest there was inadequate communication with Mrs R’s GP.
65. We can see how the failings in communication caused distress for Ms R that could have been avoided.