Sharing information whilst Mrs N was an inpatient
21. Mrs T told us Dr D did not tell her sister she had a brain tumour, despite seeing this on the imaging. We understand why Mrs T feels so strongly about this. She has told us about how independent her sister was, and how she would have wanted to know everything she could about her condition.
22. Mrs T commented that the Trust’s complaint response had said ‘You may recall at Mrs N’s inquest, when your family queried why [Mrs N] was not told of the suspected tumour at an earlier stage, Dr D explained that he did not want to cause Mrs N any unnecessary worry until the team were confident of the correct diagnosis’. Mrs T said she did not think it was right Dr D had made this decision.
23. We asked our adviser to give a summary of what the medical records showed, so we could see whether the information shared by Dr D was reasonable and in line with guidance.
24. The initial CT scan of 9 June was reported by the First Trust as likely to represent an infarct (this where the blood supply to part of the brain is cut off, damaging brain cells).
25. A repeat CT on 10 June confirmed that impression, and so the First Trust treated Mrs N’s condition as a stroke. An MRI on 11 June suggested it was more likely Mrs N had encephalitis (a serious condition where the brain swells) or a slow growing brain tumour.
26. The First Trust considered the MRI results on 11 June and thought it more likely to be encephalitis, in light of Mrs N’s symptoms and began treatment with acyclovir (an anti-viral medication).
27. The records show Mrs N had dysphasia (a condition that affects the ability to produce and understand spoken language) at this point. The notes for 12 June say ‘possibly some receptive dysphasia/misinterpretation. Has insight to a certain degree - says memory is not good and hearing things that are probably not true’.
28. It was within this framework that Dr D saw Mrs N on 14 June. He was aware of the imaging results, the assessments and the First Trust’s treatment plan. His assessment notes repeated the information on the MRI report.
29. Dr D shared information with Mrs N about the likely condition of encephalitis and the treatment for this. This was the information he judged she needed at that stage, and it mirrored the information the First Trust had shared.
30. Our adviser told us this was reasonable and, based on the evidence we have seen, we consider it was in line with the GMC guidance Good Medical Practice. This says:
‘The exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about:
• their condition(s), likely progression, and any uncertainties about diagnosis and prognosis • the options for treating or managing the condition(s), including the option to take no action • the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option.’
31. Our adviser explained the records show Mrs N had dysphasia and this impacted her ability to understand and retain information. If Dr D had shared what was only a suspicion - the possibility that her condition may be caused by a brain tumour - this may have caused Mrs N stress and have impacted upon her health negatively, for no positive reason.
32. Sharing information with a patient is always a judgement call, balancing the likely prognosis, the information the patient is able to understand at that time and what decisions the patient could make about treatment. Our adviser told us at that stage there were no other appropriate treatment options different from what Mrs N was offered.
33. Based on this we think it was reasonable and in line with the guidance in paragraph REF _Ref165388975 \r \h 30 for Dr D to share the information he did. The letter he sent to the GP sent on 17 June confirmed he had told Mrs N he had concerns about the scan, and intended to repeat her imaging in a month and review her in clinic.
34. To summarise, with many decisions in medicine there are often several conditions that can cause symptoms and doctors make a decision about what is most likely, and what information a patient needs to know on each occasion. It is reasonable and in line with the guidance for the doctor so share the information on what is most likely, and not on all possible scenarios, especially when there are issues about understanding, retaining information and the impact on the well-being of the patient to consider.
35. For these reasons we have not found failings in how the Trust shared information with Mrs N at this stage, about whether there was a possibility she had a brain tumour.
The delay in sharing the outcome of the MRI scan
36. Dr D told Mrs N on 14 June he had concerns about the CT scan, and so he arranged for her to have an MRI scan. This took place on 21 July. Referring Mrs N for another scan was in line with the NICE guidance in brain tumours NG99. This says: ‘Offer standard structural MRI (…) as the initial diagnostic test for suspected glioma, unless MRI is contraindicated.’
37. Our adviser told us if Mrs N had encephalitis he would have expected there to have been improvements on the MRI scan. As there weren’t, and the appearance was unchanged, at this point in time the imaging became more suggestive of a glioma (a cancerous brain tumour).
38. The repeat MRI was not brought to Dr D’s attention until 4 August. The Trust has acknowledged this should have happened sooner and we agree.
39. It is not clear why the Trust did not review these unusual MRI images sooner. Our adviser said he would expect there to be an alert system to avoid such an error. If Dr D had been told of the outcome then it is possible Mrs N would have been told 23 days sooner (allowing for the weekend and Dr D reviewing the report).
40. Dr D met with Mrs N on 5 August to share the new, more likely diagnosis with her. This was in line with the guidance outlined in paragraph 30. There was no communication delay on Dr D’s part in informing Mrs N once he was aware.
41. There were no further delays in communication and the case was reviewed in the neuro-oncology MDT (a group of health professionals with expert knowledge in the investigation and treatment of patients who may have a tumour in the brain) on 6 August.
42. There was therefore an avoidable delay of about three weeks between the repeat MRI on 10 July and Dr D being told of it on 4 August. The subsequent appointment with Mrs N and the MDT were carried out without delay.
43. Mrs T has complained the impact of the delay was that it may have prevented Mrs N from getting earlier more effective treatment, and from considering her options sooner.
44. While it is correct there was a delay in telling Mrs N her options, our adviser told us the delay made no difference to the treatment options available. The consultant neurosurgeon met with Mrs N on 11 August and explained it was likely the tumour had been growing for years. He explained the options and the intention to carry out further assessments over the ‘next few weeks’.
45. Our adviser told us there was no immediate or urgent treatment that could be offered. The plan was in line with guidance NG99, which recommends consideration of the options of conservative management, biopsy and an operation, which was the outcome of the MDT.
46. We asked our adviser what processes should be in place to ensure MRI results are reviewed in a timely way. He explained many Trusts implement an alert system where results of imaging with a significant or unexpected abnormality are emailed to the requesting doctor for urgent action.
47. We looked at the what the NPSA safer practice notice said about what should happen to ensure radiology imaging results are communicated and acted on appropriately.
‘The National Reporting and Learning Service (NRLS) recommends that all healthcare organisations providing or commissioning radiological imaging services should: • ensure that all radiological imaging reports are communicated to, and received by, the appropriate registered health professional and that action is taken in a manner appropriate to their clinical urgency; • ensure registered health professionals design ‘safety net’ procedures for their specialty;make clear to patients how and when they should expect to receive diagnostic test results; • review relevant policies and procedures in line with the detailed recommendations outlined in the notice.’
48. Following this the Royal College of Radiologists (RCR) produced the guidance ‘Standards for the communication of radiological reports and fail-safe alert notification’. This says ‘it is the responsibility of the trust or other equivalent healthcare organisation to provide systems whereby, as soon as a verified imaging report had been produced, it is easily available to be read and acted upon by the referrer, their team and other relevant clinicians’ and ‘it is the responsibility of employing organisations to ensure appropriate reporting and fail-safe systems are in place and to audit regularly’.
49. This did not happen at the Trust. We consider there has been an injustice to Mrs T as she told she is not reassured the Trust has carried out changes to make sure this would not affect another family. We understand the worry and upset this has caused her. We have not seen sufficient evidence to make us confident such a failing would not happen again. We have made recommendations outlined in the relevant section at the end of this report.
Delay in sending letter to GP
50. Mrs T told us the time the Trust took to type the letter from Dr D to Mrs N’s GP, recommending a change of medication, was not good enough. We understand why she is concerned as Dr D dictated the letter on 5 August and it was not transcribed until 26 August.
51. Mrs T told us about her concerns this may have had an adverse effect on Mrs N. She told us this delay in changing medication may have led Mrs N to think the side effects of medication were causing the breathlessness, and this may have led to the symptoms of pulmonary embolism being overlooked.
52. Our adviser told us there are no guidelines on the timely transcription of letters in the NHS. The general problem of administrative delays in the NHS is recognised as common, as identified in research by the King’s Fund ‘Admin matters: the impact of NHS administration on patient care’ June 2021. This recognises the need for widespread research and improvements.
53. We agree the time taken was not ideal, and we recognise administrative resource constraints are a wider issue. Our adviser said there was no reason why Dr D should have suspected that there was anything urgent about this letter. In the absence of any guidance, and no indications to say it should have been expedited, we cannot say the time taken was a failing.
Reports of breathlessness not acted on
54. Mrs T said her sister kept telling the doctors how breathless she was, and she is concerned nobody picked up on this. she said because they were brain specialists rather than respiratory specialists they should have referred Mrs N on when they realised that her symptoms were not typical for the brain tumour.
55. We looked in the medical records for mentions of breathlessness. It is noted in Dr D’s letter outlined in paragraph REF _Ref165384977 \r \h \* MERGEFORMAT 50, lethargy is mentioned in the record of an appointment with consultant neurologist Mr L on 11 August, and finally there are several mentions of breathlessness in the notes of Mrs N’s appointment with a neuropsychologist on 26 August.
56. We considered whether the Trust should have done more following Mrs N reporting breathlessness. Our adviser explained shortness of breath is a non-specific symptom with many possible causes, and unfortunately pulmonary emboli are very difficult to diagnose.
57. Whilst we now have the retrospective knowledge that Mrs N had a PE, it is reasonable to judge the consultations in light of the context and the information the practitioners had at the time.
58. Our adviser explained PE is not an easy condition to diagnose. The NICE CKS Pulmonary embolism (updated October 2020) says ‘Signs and symptoms of pulmonary embolism are non-specific, but symptoms typically have a sudden onset’.
59. In this context our adviser said it is reasonable this symptom was not singled out as particularly significant against a background of seizures, possible adverse effects of medication, anxiety and palpitations. Mrs N’s symptom of breathlessness at these appointments could reasonably be explained by these.
60. We consider the practitioners acted in line with Good Medical Practice guidance which says a doctor should: ‘adequately assess a patient’s condition(s), taking account of their history, including symptoms, relevant psychological, spiritual, social, economic, and cultural factors, the patient’s views, needs, and values’.
61. Mrs N’s husband phoned consultant neurologist Mr L on 31 August and explained Mrs N’s increased breathlessness. The Trust advised Mrs N to go to hospital at this point, as it became apparent her symptom of breathlessness was likely to have another cause.
62. To summarise, we have not seen that the practitioners acted outside guidance in their consideration of the symptom of breathlessness, when presented in the context of Mrs N’s underlying condition.
Service improvements
63. Mrs T told us how much the delay impacted on Mrs N. She said the symptoms of extreme nausea, tiredness and confusion affected Mrs N, her family, and also her work colleagues and friends. We understand and accept that the period of not knowing about her condition meant she did not have all the information she needed to understand what was happening, or to seek advice and support.
64. We asked the Trust what service improvements it has made to prevent a recurrence of the delay as outlined in paragraph REF _Ref165390923 \r \h 38. The Trust told us:
‘As a service improvement, the neuroradiology department now have a robust system in place, where two support secretaries have dedicated time in their day to email out radiology reports on a weekly basis. This ensures that there is no backlog due to annual leave or sickness within the team, and this is monitored closely by the administration manager.
65. Taking into account the views of our adviser we do not think the service improvements provide sufficient reassurance that the Trust has done enough to prevent a recurrence.
66. The Trust appears to be relying upon the actions of individuals to check the systems and then notify individual practitioners. This is not a fail-safe system and as it relies on human intervention it is susceptible to human error and resources shortage. As we have seen in paragraph REF _Ref165390393 \r \h 52 the availability of secretarial and clerical support is not necessarily reliable in the NHS.
67. There is no mention of an audit or any other the other actions outlined in paragraphs 47 and 48.
68. Our adviser said to be in line with the guidance of paragraphs 47 and 48 a more robust system is required. Such a system would not depend on email but instead would require clinicians to inspect results on their patients and sign them off when seen and actioned (such as the ICE system used in many hospitals). Email should be an additional radiological alert system for unexpected or significant new findings.