24. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event complained about had a negative effect which the organisation has not put right. Having done so we have found the Trust has already done enough to put right the impact of these events.
Diagnosis of kidney issues and treatment plan
25. Mr B complains Trust staff failed to correctly diagnose his kidney issues in a timely and appropriate manner from the initial DMSA Scan in September 2023, which suggested an issue with his right kidney (that it was significantly smaller in size), to the point he chose to receive treatment for his condition at another hospital in October 2024.
26. We have carefully considered Mr B’s concerns in line with each stage of his care with the Trust.
Actions after DMSA scan on 8 September 2023
27. Mr B raised concerns that his follow up consultation after the DMSA scan on 8 September 2023 was marked as routine. This scan had shown that Mr B’s right kidney to be smaller than the left and a little irregular in outline. It also noted his right kidney was contributing 20% and the left kidney 80% to the overall function.
28. The National Kidney Federation guidance ‘Small or single kidney’ explains many people with a small or single kidney have excellent health with no problems, and do not need treatment. Therefore, we have not seen indications of failings in the decision to mark the follow up consultation as routine as there was nothing to suggest the need for an urgent appointment at that stage.
29. We note Mr B’s routine follow up consultation did not occur until 11 March 2024. Our adviser explains the wait for routine follow up appointments vary significantly between different hospitals. There is no set guidance as to timescales for routine appointments.
30. The guidance recommends that urologists ensure that patient prioritisation is based on clinical need. As there was no suggestion of any concerning abnormality at the time of the DMSA scan findings, the wait time would be reflective of the hospital’s prioritisation of urgent vs routine appointments.
31. We therefore do not see indications of failings in marking the time taken for the follow up consultation.
32. Following the consultation on 11 March 2024, a repeat ultrasound scan and a CT scan was requested. This was to assess the right kidney in more detail as the initial ultrasound scan showed the impression of cysts or upper pole dilation (swelling) which could be due to a duplex kidney. In a duplex kidney, a single kidney develops two tubes (ureters) instead of one. This pathway of testing is consistent with the NHS guidance ‘Urology: the path to recovery manual.’
33. We note the ultrasound scan was completed on 3 May 2024 (some seven weeks later), but the CT scan did not take place until 18 June 2024 (some 14 weeks later).
34. The NHS England guidance ‘NHS Diagnostic Waiting Times and Activity Data’ sets out the aim to complete for 15 key diagnostic tests, which include ultrasound and CT scans, within six weeks from the point of the referral. Based on this, the timeframe for the ultrasound scan was close to this target, but the wait for the CT scan exceeded significantly.
35. The Royal College of Radiologists ‘Statement on NHS England’s May 2024 diagnostic imaging and cancer waiting times’ says the six-week diagnostic waiting time was missed in 17% of patients, reflecting the strain the NHS is under. Therefore, whilst we consider the timescale for Mr B’s CT scan exceeded the six-week timescale, this was not necessarily an indication of a failing in the Trust’s care.
36. We note the Trust’s complaint response of 23 December 2024 acknowledged and apologised for this delay and the frustration and concern Mr B experienced during this period of investigations.
37. We consider this was appropriate in line with our ‘Complaint standards’, which say organisations should openly identify instances when things have gone wrong, or where services have had an unfair impact, and take responsibility for these. We therefore do not see indications to suggest further action is needed in relation to this concern.
Actions after the CT scan on 18 June 2024
38. The results of the CT scan on 18 June 2024 said ‘there is a Bosniak 3 cyst at the upper pole of the right kidney with a further smaller Bosniak 2F cyst at the medial lower pole. *CODE RED*.’
39. Bosniak cysts are fluid-filled sacs in the kidneys that are classified using the Bosniak classification system, which describes 4 main categories of kidney cysts (Bosniak 1-4). These categories predict the risk of cancer in the cyst based on appearances on scans.
40. A Bosniak 3 cyst is a kidney growth with irregular features on an imaging scan, which makes it an ‘indeterminate’ risk - it could be cancerous or not. While a standard, simple cyst is almost always harmless, a Bosniak 3 cyst falls in a grey area and requires careful attention.
41. The CT scan findings were discussed in an MDT on 25 June 2024, and it was agreed to arrange a further CT scan of Mr B’s chest and discuss the possible removal of the right kidney. This was a precautionary scan to establish if metastatic cancer was an issue for Mr B.
42. Mr B was very concerned by the possibility that the cysts could be cancerous, and he wished to wait until after seeing the consultant to have the chest CT scan. He feels the Trust’s actions at this time delayed his possible treatment. We have considered this further below.
43. The study ‘Malignancy Rate, Histologic Grade, and Progression of Bosniak Category III and IV Complex Renal Cystic Lesions’, explains a Bosniak cyst has a 40-60% chance of being cancerous. However, the risk of spread is rare, about 1.2%-1.8%. Some patients may choose to have monitoring rather than surgery (active surveillance).
44. In line with this, we consider the decision to arrange a chest CT scan before starting treatment or agreeing surgery was appropriate. The NICE guidance ‘Metastatic malignant disease of unknown primary origin in adults: diagnosis and management’ notes a chest CT scan can be appropriate as a primary investigation tool, to check if Mr B had cancer which had metastasised (spread). The outcome of this would then have helped inform the urgency of further investigations or treatment.
45. We therefore we have not seen indications to suggest that Mr B should have started treatment sooner, due to the low risk of disease progression and spread. We recognise the distress and concern these events and findings caused Mr B, and we hope our explanation above provides some reassurance about the clinical decisions at this time.
Communication of the CT scan results on 18 June 2024
46. Mr B says he received a letter from the Trust after his CT scan of the kidneys, to arrange an urgent chest CT scan. Mr B explains this letter caused him a great deal of concern, as he had previously been told his duplex kidney was ‘an academic issue’ and did not need surgery or further treatment. Mr B says he had not received any other communication from his consultant to explain why he needed a further CT scan, or to explain if the thinking on his diagnosis had changed.
47. The GMC guidance ‘Good medical practice’ requires doctors to share test results with patients in a way they can understand and in a timely manner. The clinician who orders a test is responsible for reviewing, acting upon, and communicating the results and any necessary actions to the patient.
48. In line with this, we consider it would have been best practice for the consultant requesting the chest CT scan to inform Mr B (either by letter, phone call or face to face) of need and reasons for requesting this.
49. Mr B explains he called his consultant’s secretary to ask about the reasons for the further CT scan, but they were not able to answer his questions. He says the secretary advised someone would ring him the next day. We appreciate the lack of information at this time will have added to Mr B’s worries. We do however consider it was appropriate that the secretary arranged a call with someone familiar with Mr B’s care, as they are not medically trained.
50. The next day, on 28 June 2024, a urology nurse practitioner contacted Mr B by telephone to share the results of the CT scan and explain the reasons why a CT scan of the chest had been requested by the urology consultant. The urology nurse practitioner also apologised for Mr B receiving an appointment without this being explained to him in advance.
51. Whilst the GMC guidance says the clinician is responsible for ordering and explaining any tests to a patient, we consider it was reasonable that this information was shared with Mr B by the urology nurse practitioner. This is because the nurse was involved in Mr B’s care and working in the same department in a senior position. We therefore do not see indications to suggest it was a failing for the nurse to deliver this information.
52. We also consider it was appropriate for the nurse to acknowledge and apologise for the distress Mr B had experienced due to these events. We consider this was in line with our ‘Complaint standards’, which say organisations should be open and honest when things have gone wrong and give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.
53. We therefore consider this concern was appropriately addressed at the time and do not see indications to suggest further action is needed.
General Communication
54. Mr B feels the urology team who had responsibility for his treatment provided confusing and conflicting information. Mr B says this increased his concerns and led him to believe that the team were not supporting him adequately.
55. During the course of treatment, Mr B had contact in various forms with four senior members of the urology department, each of whom had differing opinions which he states contributed to the confusion he was experiencing.
56. The GMC guidance ‘Good medical practice’ says:
‘Sharing information with patients • 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.’
57. On 23 December 2024, Mr B received a letter from the Trust which provided a full explanation of the diagnosis and treatment plan during this period. Although this document was provided to Mr B after he choose to seek treatment elsewhere, it answers all of the questions raised in respect of the confusion he was feeling whilst a patient at the Trust.
58. Within this response is an acknowledgement of Mr B’s confusion as a patient due to the protracted period of time whilst the medical investigations were taking place. There is also an explanation from the Trust regarding the roles of the individuals involved, together with an apology for any confusion that these changes may have caused.
59. Having reviewed this response alongside the issues brought to us by Mr B, we acknowledge and appreciate the confusion he felt due to the sheer number of procedures and professionals involved during this period. We recognise this must have been difficult and worrying due to the uncertainty he faced.
60. We consider the Trust has appropriately responded to these concerns in line with our ‘Complaint standards’. These say organisations should openly identify instances when things have gone wrong, or where services have had an unfair impact, and take responsibility for these. Organisations should also give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.
61. In line with this, we can see the Trust has provided a full explanation in respect of all staff members involved. A number of apologies have been provided regarding procedures, any confusion caused and communication, together within a sincere offer to continue or return for treatment at the Trust should Mr B wish.
62. Mr B made a particular complaint in respect of an appointment with a urology consultant on 16 July 2024 which caused him some distress due to the way this person conducted themselves. Again, this was referred to in this document with a full apology and explanation provided by the individual involved.
63. Overall, we consider the Trust has taken appropriate action to investigate and respond to Mr B’s concerns, in line with our ‘Complaint standards’. We consider it has been open and honest where things went wrong and has offered a full and sincere apology to Mr B. We therefore do not see indications to suggest further action is needed in relation to this aspect.
Summary
64. We hope to reassure Mr B we have seen evidence to suggest Trust staff acted promptly to investigate his symptoms. We have seen no evidence to indicate the Trust followed an incorrect investigation pathway and our adviser has confirmed that all tests referred for were appropriate in order to ensure a correct diagnosis and treatment plan, in line with the guidance ‘Guidelines on the management of renal cyst disease.’
Complaint handling
65. Mr B says when the Trust investigated this complaint, it provided ‘untrue’ and ‘distorted responses’ to his concerns. He says this caused him further distress, as he feels the Trust was not open, honest and transparent with him about his care.
66. We recognise Mr B was left feeling disappointed after the Trust’s investigation of his complaint. We are sorry this left him feeling like he was missing important information about his care and recognise this was very important to him to get the closure he needed.
67. Our ‘Complaints standards’ say when an organisation investigates a complaint, we expect staff to ‘give a clear, balanced account of what happened based on established facts’. This would include comparing ‘what happened with what should have happened’ and give an ‘objective’ response based on facts and evidence.
68. In this case, we can see Trust staff correctly considered Mr B’s medical records as part of its investigation. This assures us it referred to relevant evidence, to reach an objective, evidence-based view about the care he received. We can see it set out a clear chronology of events, to explain each stage of Mr B’s care thoroughly. We did not see any indications it overlooked any parts of Mr B’s complaint.
69. Taking all this into account, we consider the Trust acted in line with our ‘Complaints standards’. We therefore do not see indications to suggest further action is needed in relation to this concern.
Conclusion
70. We thank Mr B for taking the time in bringing his complaint to our attention. We hope our explanation brings some reassurance that the care and treatment he received was in line with current standards and guidance. We wish Mr B the best for the future.