Miss K says she was told she would be having bladder replacement surgery in May 2022, but instead she had a stoma fitted. She says she was told the stoma was temporary, but then told it was permanent.
17. At the appointment with a consultant urological surgeon on 17 February 2020, Miss K’s history of bladder pain was discussed. It was noted that Miss K had previously used ketamine. The possibility of bladder augmentation (a procedure to enlarge the bladder) was discussed, but it was noted that this might not be possible as Miss K was not able to tolerate urethral catheterisation (to drain the bladder through a tube). The option of cystectomy with ileal conduit was also discussed and it was noted that this option did not require urethral catheterisation. The consultant noted that the bladder augmentation required an assessment of her bladder by a video study. The consultant recorded that Miss K had been given all the relevant information leaflets.
18. This video study took place in July 2020 and showed Miss K had a painful urethra and bladder, and the bladder was not able to be filled.
19. The results of this study were discussed on 26 October 2020 with a consultant urological surgeon. It was recorded that Miss K was keen for simple cystectomy and ileal conduit and that she understood the operation very well. The consultant explained that Miss K would require a clinical psychology assessment prior to the surgery.
20. Miss K had further assessments for her ongoing bladder issues followed by a psychological assessment. The consultant clinical psychologist wrote to Miss K’s urological surgeon on 14 October 2021, explaining the details of the assessment. In this letter the clinical psychologist considered the current impact of Miss K’s condition and what she wanted to achieve as a result of the surgery. It was recorded that Miss K had explained that living with a colostomy bag was a possibility as a result of the surgery. Miss K approved the draft of the clinical psychological report.
21. Miss K was next seen by the urological surgeon on 13 December when the consultant had access to the psychological report. Miss K’s surgery was discussed, and the next steps were for the surgery to be discussed at the MDT. The surgery was agreed at the MDT in March.
22. The way in which decisions about treatment need to be recorded, is set out in GMC Good Medical Practice guidance. This guidance says:
Clinical records should include:
-relevant clinical findings -the decisions made and actions agreed, and who is making the decisions and agreeing the actions -the information given to patients -any drugs prescribed or other investigation or treatment -who is making the record and when
23. The record of the consultations Miss K had from February 2020 up to her surgery in May 2022 clearly set out the treatment options that were being considered, the relevant assessments and what information was given to Miss K.
24. There is reference to bladder augmentation at the clinic appointment in February 2020 when it was discussed that this may not be an option because Miss K was unable to tolerate urethral catheterisation. Further tests took place to decide the next steps and it was recorded in October 2020 that Miss K was keen for the cystectomy and ileal conduit surgery with the surgery being discussed again in December 2021. Copies of these letters and the psychological assessment were sent to Miss K.
25. From the evidence we have seen bladder augmentation was discussed with Miss K. Simple cystectomy and ileal conduit were also discussed and there is suitable evidence it was agreed Miss K required this surgery to try and resolve her bladder problems. Simple cystectomy and ileal conduit are referenced on numerous occasions in consultations and copies of these letters were sent to Miss K, alongside a psychological assessment where it was recorded that Miss K did not think living with a colostomy bag would be a problem for her.
26. Our adviser has explained that Miss K’s condition is described by the BAUS as stage III ketamine uropathy. The BAUS consensus statement says that the best treatment for this condition is urinary tract reconstruction, which is the surgery Miss K had.
27. The consent process for Miss K prior to her surgery was for the simple cystectomy and ileal conduit procedure and it was recorded by the stoma nurse prior to the surgery that Miss K had a good understanding of the surgery, although was under the impression it may be temporary. The stoma nurse advised Miss K this would not be the case.
28. We have not seen any evidence to suggest Miss K had previously been advised the stoma would be temporary. The possibility of living with a colostomy bag is clearly recorded in the psychological report. Regardless of this, Miss K did believe the stoma would be temporary on the morning of her surgery. Having to deal with this must have been difficult and distressing for Miss K.
29. Based on the evidence we have seen we are satisfied Miss K’s treatment options were suitably considered and the surgery she would be having was appropriately considered and explained. We recognise that Miss K said on the morning of the surgery that she believed the stoma was to be temporary. We are not persuaded this was because of a failure by the Trust in explaining the surgery to Miss K and we are satisfied there is suitable evidence of communication with Miss K throughout the process. The recording of the decisions was in line with the GMC guidance and the surgery provided was appropriate for Miss K’s condition as set out in the BAUS guidance.
30. We do not underestimate the distress Miss K has suffered and still does. Her life changed as a result of the surgery. We appreciate how difficult this must have been.
Miss K says that she was not given access to a stoma nurse before the surgery in May 2022. She says this meant she was not prepared for the impact of a stoma, and the stoma was not put in the best location.
31. The BAUS sets out what patients can expect from surgery in information leaflets to patients about the formation of an ileal conduit. This leaflet explains that before the procedure, a stoma nurse will speak with the patient to help decide the location of the stoma and make marks on the abdomen for the surgeon to follow.
32. The notes made at 9.00am on 11 May by the stoma team include a table which has been completed with relevant details about Miss K’s surgery. This includes information about the role of the stoma team, demonstrations of equipment, discussions about lifestyle issues, potential complications and the selection of the location for the stoma. Our adviser has explained that the location of the stoma agreed at this time was the same location where the surgeon placed the stoma.
33. We recognise that the discussions with the stoma team would have been difficult for Miss K, and that the impact of the surgery was likely to be upsetting for her. The notes indicate a detailed discussion with Miss K about the stoma and its location. It is recorded that Miss K was given the relevant information leaflets and training pack and that the stoma team answered her questions. As previously mentioned, Miss K’s views on the impact of a stoma had already been discussed at her psychological assessment, where it is also noted she had read the leaflet about the impact of her surgery, and lifestyle issues were discussed again with the stoma team on 11 May.
34. Taking into account the information we have seen we are satisfied there was suitable input from the stoma team before Miss K’s surgery, which was in line with the expectations set out by the BAUS.
Miss K says about four weeks after the surgery, stents used during the surgery were removed, but Miss K says she was not subsequently given antibiotics. Miss K says this resulted in her getting sepsis.
35. As part of our investigation, it became clear that the stents were not removed by the Trust, and that this procedure was completed by a different NHS organisation. Therefore, the decision not to provide antibiotics was made by the organisation that removed the stents.
36. However, the Trust has responded to this point in its letter to Miss K June 2023. This response is misleading as it suggests the decisions about antibiotics were made by the Trust.
37. To provide some reassurance on this issue, we have taken independent clinical advice to understand whether antibiotics are provided in these circumstances.
38. A British Journal of Nursing paper on ureteric stent removal post cystectomy does not reach a consensus on whether antibiotics are required as part of the stent removal procedure, suggesting there is no specific requirement to provide them, and this supports the Trust’s view that antibiotics are not standard procedure after stent removal. There is no specific guidance which says that antibiotics should be provided as part of the stent removal procedure.
Miss K says nephrostomy bags were fitted after the surgery, and these were left in place for too long.
39. Miss K’s nephrostomy bags were fitted in June 2022 after she developed sepsis, and they were removed in September 2023.
40. The BAUS consensus statement on the management of ketamine uropathy says that in stage III disease the ureters can be involved, causing blockage and obstructing drainage from the kidneys. Our adviser has explained that Miss K developed a urinary tract infection and that in the presence of poor kidney drainage, this led to sepsis requiring emergency drainage of the kidneys with nephrostomies. Before the nephrostomies could be removed the ureters needed to be unobstructed to allow for normal kidney drainage.
41. On 2 February 2023 Miss K has a consultation in the urology clinic and the nephrostomies were discussed. It was noted that at this time Miss K was still taking ketamine and the consultant advised Miss K to stop, as it prevented any further procedure from taking place as well as being toxic for her urinary system.
42. At the next appointment with the urology team on 29 June 2023 Miss K explained that she had been ketamine free for three months. Surgical options were proposed to take place after the summer period and the surgery took place in September 2023.
43. The Trust said in its response that earlier removal of the nephrostomies would lead to a return of the fibrotic blockage. Our adviser has explained that prior removal may have resulted in worsening renal function and potentially life-threatening renal failure and sepsis.
44. We are satisfied it was suitably explained by the Trust why the nephrostomies could not be removed earlier, and this decision was in line with the BAUS guidance. We acknowledge how difficult it must have been to have the nephrostomies in place for a prolonged period and hope that Miss K is reassured that this decision was in her best interests.