Lack of routine monitoring 21. Section 1.6 of NICE NG2 covers follow-up after treatment for muscle-invasive bladder cancer. It says organisations should consider monitoring for recurrence using CT of the abdomen, pelvis and chest (CAP), 6, 12 and 24 months after radical cystectomy. For men with a defunctioned urethra, organisations should consider urethral washing for cytology and/or urethroscopy annually for five years to detect urethral recurrence.
22. Miss L says the Trust did not carry out six monthly CT scans and annual urethroscopies. She is concerned he was last recalled for a CT scan to check the progress of his cancer in February 2021 and his last urethral scan was in March 2021.
23. Mr L underwent radical cystectomy in April 2020 to remove muscle-invasive bladder cancer. In line with the NICE NG2 guidance, the Trust should have considered performing repeat CT scans on October 2020, April 2021 and April 2022. The last CT CAP was arranged by the Trust on 26 June 2021.
24. The only evidence we have seen of imaging carried out after that is an ultrasound of the urinary tract on 26 February 2022. Our adviser said this would have been inadequate to identify disease recurrence. Our adviser said the use of IV contrast would not have been possible with poor kidney function and a CT without this contrast would have had limited use in accurately diagnosing recurrence.
25. The last urethroscopy performed on Mr L was in March 2021. No attempts seem to have been made to schedule this again in April 2022, when this was due in line with NG2. We consider there is a failing in the Trust’s monitoring of Mr L.
26. As we have reflected, is not clear from the available documentation whether Mr L had any recurrence of his cancer, due to the lack of adequate imaging since June 2021. We know this is something Miss L remains concerned about.
27. Our adviser explained crosscheck systems should ideally be in place to set up recall for any service that necessitates timed, follow-up procedures. We recognise many of them rely on paper/ electronic databases and also require constant review by dedicated personnel.
Blood tests 28. The NICE CKS on chronic kidney disease says in established chronic kidney disease, renal function tests are monitored every three months, or earlier if acute deterioration is noticed.
29. Miss L says the Trust did not arrange blood tests. The Trust has acknowledged her father did not appear to have blood tests to monitor his renal function between September 2021 and April 2022.
30. The Trust’s complaint response suggests an appointment was due to take place four months after September 2021, which would have been in January 2022. This is broadly in line with what we would have expected. We consider it a failing this did not happen.
31. Mr L’s next blood tests would then have been due in April 2022. We understand they did take place at that time. We therefore consider Mr L lost the opportunity to have one set of blood tests.
Nephrostomy during terminal illness 32. Miss L says the Trust did not diagnose her father had a terminal illness and put him through a nephrostomy procedure that traumatised him.
33. Point 16 of GMC ‘Good medical practice’ says doctors must take all possible steps to alleviate pain and distress whether or not a cure may be possible. This involves providing effective treatment which serves the patient’s needs.
34. At the time of the nephrostomy, there was no imaging to conclusively prove that Mr L had recurrence or spread of cancer. The treating team were concerned about the severe deterioration in his kidney function and attributed it to a blockage to the solitary functioning right kidney, which was reversible.
35. Following the nephrostomy placement, his kidney function improved. When the nephrostomy tube fell out, the Trust decided to insert an antegrade stent (a plastic tube through the kidney down the ureter into the bladder) and replacement nephrostomy so that the blockage could be treated internally.
36. The plan was to remove the nephrostomy completely, once the Trust had confirmed urine was draining into Mr L’s bladder. He sadly developed an infection and urosepsis so the Trust was unable to follow through with this plan.
37. Our adviser said as Mr L did not have a confirmed diagnosis of terminal cancer or irreversible kidney disease, the Trust was correct in recommending a nephrostomy procedure. This would have aimed to improve his kidney function and general health.
38. We have not identified any failings here. We hope this reassures Miss L about the Trust’s approach.
Discharge paperwork 39. Miss L says the Trust did not discharge her father with the right paperwork, which meant he did not get a follow up appointment to change his nephrostomy tube (a procedure known as nephrostomy exchange) and put him at risk of infection.
40. NHS England’s standard contract guidance sets out that NHS providers must issue a discharge summary to the patient’s GP within 24 hours of inpatient care, daycase case, or A&E attendance. After an outpatient attendance, the patient’s GP should be sent a clinic letter within seven calendar days.
41. Our adviser said it is standard practice for the follow-up plans to be explicitly stated in the discharge summary. This then alerts the treating teams, the patient, and their doctor of the need to change the nephrostomy within a specified time.
42. The Trust has acknowledged Mr L and his GP did not receive a discharge summary after the Trust inserted his nephrostomy. There is evidence of a failing here.
43. Our adviser said there are no specific guidelines regarding the optimum timing of nephrostomy exchange. Most patient leaflets, including the BAUS leaflet, say this should happen within three months. However, our adviser noted there is limited evidence that suggests this interval may need to be as short as six to eight weeks in patients with underlying malignant ureteric obstruction or those with recurrent urinary infections.
44. We can see the first nephrostomy was inserted on 8 July. The Trust replaced it on 25 August and Mr L was scheduled for a nephrostomy exchange in November 2022. Miss L says that was a direct result of her involvement. The November date would have been within the standard three month timeframe. We consider Mr L’s stent should have prompted the Trust to change it sooner. We consider it a failing this did not happen.
Response to concerns 45. Miss L says the Trust did not act when she raised concerns her father’s CT scan was overdue and his nephrostomy tube needed to be changed.
46. Our Principles of Good Administration say organisations should be prepared to listen to the people that need their services. When mistakes happen, they should acknowledge them, apologise, explain what went wrong and put things right quickly and effectively.
47. As we have explained, the Trust did not arrange the repeat scan and did not change Mr L’s nephrostomy tube as soon as it should have. Miss L has described her repeated attempts to request that the Trust take action. Based on what we have seen, we consider the Trust did not act in line with our Principles throughout.
48. We understand the Trust initially assured Miss L her father would be recalled but it seems there was no process in place to check this. Eventually, she was signposted to the urology consultant’s secretary by a district nurse. This led to a prompt reply but sadly, Mr L had a UTI which he was receiving treatment for and he was then admitted to hospital.
49. We recognise the uncertainty Miss L has been left with around how a different course of action would have changed what her father went through in his last months.
Impact 50. Miss L has described how she just wanted the Trust to understand how much harder its inefficiency and unsympathetic attitude made an already difficult situation. She felt its approach lacked kindness and compassion and she wanted it to realise the need for a cultural change. She told us her family was left feeling the Trust did not really care about patients and families.
51. Miss L says the Trust’s actions led to her father’s death and meant he lost the opportunity to die at home. Based on the advice we have received we are unable to say Mr L’s urosepsis, the cause of his death, could have been prevented.
52. Bacterial colonisation by attachment of a biofilm of bacteria to all foreign bodies such as nephrostomy tubes inserted into the urinary tract occurs within 48 hours of insertion. While the risk of developing urosepsis might have been lower if Mr L’s nephrostomy had been changed, as reflected in research, there are a multitude of factors affecting urosepsis.
53. As the Trust has acknowledged all of the issues we identified in relation to the care Mr L received. We cannot say, even on balance, that these issues played a significant part in his death. This does not detract from the concern Miss L experienced at the time of the events.
54. Miss L told us how distressed her father had been at the thought of going back to the Trust. She explained her father decided he did not want to be taken to the Trust when he needed care in the last days of his life. We were sorry to hear Mr L’s experience affected his confidence in the Trust so significantly.
55. We recognise Mr L’s family could have been better informed about his progression of cancer and the reason for the deterioration in his health. This would have been possible if the underlying bladder cancer, and the decline in kidney function due to progressive ureteric obstruction, had been monitored more closely.
56. We think the Trust has already taken some appropriate action to put service improvements in place. However, we could not see evidence that this had happened and the Trust was not able to assure us when we gave it the opportunity to resolve the complaint. We are proposing to make recommendations on that basis.