The Trust did not correctly position her stoma in July 2021
14. Before we decide if we should do a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not seen any signs that something has gone wrong.
15. Mrs J says the Trust did not correctly position her stoma during her operation on 28 July, which caused it to regularly leak on the outside. She says this ruined household items and clothes and made her not want to go out, causing a significant impact on her life, relationship and mental health.
16. There are no clinical guidelines for this situation but the RCS guidance applies generally. This says when doing emergency work surgeons should proactively support their organisation’s ability to make sure that patients receive high quality emergency care. It also says they must provide good clinical care by applying clinical skills, knowledge and experience and they should make sure patients are treated according to the priority of their clinical need.
17. Our adviser reviewed the operation notes. There is no sign that the Trust did Mrs J’s surgery on 28 July incorrectly. The notes indicate it did the operation in line with RCS guidance. They say the original bowel join had leaked internally leading to a lot of infected fluid in Mrs J’s abdomen. The surgeons brought the join out as a stoma. Our adviser says this is standard practice in this situation and it is in line with good care and treatment and RCS guidance.
18. Our adviser says the positioning (site) of the stoma in an emergency situation like this can be difficult. Usually, in a non-emergency situation, stoma nurses have the opportunity to see a patient and mark the ideal site. But this could not happen for Mrs J. In any case, our adviser said this is still only a guide and would be dictated by how unwell a patient is, their build and how difficult the surgery is at the time.
19. Our adviser explains that a high body mass index (BMI) can make placement of a stoma difficult. We understand Mrs J’s BMI was recorded as high. Our adviser also says in emergencies, surgery placement of a stoma can be difficult as the tissue can be delicate due to inflammation. The life-saving nature of the surgery means it is safer to bring out the stoma at a safe place, rather than the ideal place.
20. The priority here was to make sure of Mrs J’s safety as she was critically unwell and to avoid other serious complications. Unfortunately, the leaks from Mrs J’s stoma are a complication, but not one it seems the surgeon could have avoided. We understand how much of an impact the regular leaks had on her and that the position of the stoma has likely had an impact on the leaks being unable to get a proper seal. We can only imagine how difficult this was for her.
21. We have not seen any signs of failings in how the Trust did the surgery, or in how the surgeon positioned her stoma in the emergency operation on 28 July.
The Trust did not properly review and treat her leaking stoma and it took too long to revise it
22. Again, we have looked at what the Trust did and what it should have done. We have seen no signs that things went wrong.
23. There is no specific guidance for what should happen when a stoma is leaking on the outside post-operatively, but GMC guidance applies generally. It says if you assess, diagnose, or treat patients, you must work with them to assess their needs and priorities. The investigation or treatment you propose, provide or arrange must be based on this assessment, and on your clinical judgement about the likely effectiveness of the treatment options. It also says in providing clinical care you must adequately assess a patient’s condition taking account of their history and symptoms, carry out examinations where necessary and quickly provide (or arrange) suitable advice, investigation or treatment where necessary. RCS guidance also applies and this says you should listen to and respect the views of patients and respond to their concerns.
24. Before Mrs J was discharged home on 9 August 2021, she was seen by the colorectal nursing/stoma team who were aware she had a leaking stoma. Our adviser says it is not unusual for this type of stoma to leak at first and it can take a while for it to ‘mature’. The nurses identified the stoma was in a crease of skin which was causing some difficulty and they advised Mrs J what to do to create a better seal around it. They arranged for district nurse support for Mrs J to help her with this once discharged home. Our adviser says it was right for the Trust to arrange follow up support from the stoma team nurses, to help Mrs J with this going forward.
25. An ileostomy produces very caustic fluid (fluid which is capable of damaging skin). It damages the skin if there is not a tight seal or there are many leaks. Our adviser looked at Mrs J’s photographs and can see this was happening to her. Our adviser says this problem should be monitored and managed by the stoma care nurses or team in the first instance, with a trial of different stoma bags, other equipment and creams. The records suggest this is what the Trust did when Mrs J attended for follow-up appointments. The Trust listened to Mrs J’s concerns, in line with RCS guidance, and put in place appropriate support for her.
26. We understand that Mrs J’s main concern was that the Trust should have done something surgically or otherwise to resolve the leaking. She feels it took too long to operate.
27. We asked our adviser about what should happen in these circumstances. There is no specific guidance on when to operate again. But as the Trust’s ‘Abdominal Surgery for Crohn’s Disease’ information leaflet includes, there are known risks and benefits to reversal/revision surgery which should be considered. The GMC guidance also applies. In line with this guidance, the Trust acknowledged that Mrs J would need revision surgery to treat her leaking stoma and discussed this with her in her first follow-up on 8 September.
28. Our adviser says that surgery within less than three months of the surgery (on 28 July), would only be done in exceptional circumstances, for example if the stoma had retracted completely (where the stoma sinks back in, below the abdominal skin surface). Repeat surgery should be avoided where possible to allow the tissues to settle down and the patient to get used to dealing with the stoma.
29. Our adviser says that given the unavoidable poor position of the stoma and the many leaks, they would expect Mrs J to have a hospital stoma nurse or surgeon review it within six weeks of discharge. The Trust did this, as it saw Mrs J on 8 September. At that time, changes to the stoma equipment (seals and belts) were used and she was advised to contact the Trust again if she had ongoing problems.
30. During her follow-up, the Trust said it would consider attempting a reversal. But it could only do that if she lost weight to reduce her BMI and stopped smoking. This is because there are recognised significant risks of surgery. Our adviser says the Trust was correct to not list Mrs J for surgery until she had stopped smoking and was fit enough to have the operation safely.
31. Mrs J had another follow-up appointment on 26 October. She explained she was still unhappy with her stoma and her skin was very sore around it. She was waiting for a review to consider and discuss her reversal, so the Trust could not yet have booked her in for the surgery. It gave her further advice on how to use the equipment for extra security to avoid leaks.
32. On 7 December Mrs J had her review. The Trust advised again it could do the reversal, but it was currently unsafe to operate as her BMI was still high and she was smoking. The Trust said it would book the surgery pending a radiology scan to assess her Crohn’s disease and intestine. It said she needed to stop smoking for eight weeks before her surgery. Our adviser says the Trust did the right thing again by waiting until Mrs J had lowered her BMI and had stopped smoking.
33. Mrs J had more follow-up appointments with the Trust in February and June 2022. In her June appointment, because she had stopped smoking, the Trust completed a booking form to list her for surgery. It put Mrs J on the waiting list as a priority routine patient, as this was not urgent or emergency surgery. We understand it was still a very difficult time for Mrs J and she was still experiencing soreness and leaks. Our adviser said the Trust did the right thing by listing Mrs J as priority but routine (safe to wait three months or more) because she was in a stable and safe condition. Patients with urgent/emergency clinical needs would have taken priority at that time.
34. After the Trust listed Mrs J for surgery, she stayed on the waiting list and had follow-up appointments. In October 2022 Mrs J said she was still having problems with her stoma leaking and sore skin around the area, affecting her daily life. The Trust offered support while Mrs J waited for surgery. In November the Trust reviewed Mrs J again to discuss her reversal surgery. Mrs J advised she was smoking again. The Trust said she stayed on the list and it would call her as soon as possible to have the operation. It said again she would need to stop smoking and maintain her weight for it to go ahead and to avoid complications. Our adviser says the Trust gave the right advice. There is nothing more it could do to operate sooner at this stage.
35. In December Mrs J had cut down her smoking but was struggling to stop. In preparation for the surgery the Trust advised her to stop smoking. In March the Trust followed up with Mrs J and reminded her again she needed an eight-week period without smoking for her surgery to go ahead.
36. Mrs J had suspected bronchopneumonia (a type of pneumonia or inflammation of the lungs) in January 2023. In April she still had problems with her chest and had a course of steroids. The Trust cancelled her surgery advising it was unsafe to proceed because she was too high risk after having a course of steroids. We asked our adviser about this. They said this was correct and in line with good care and treatment. It would not have been safe to proceed.
37. Mrs J also advised she wanted the stoma repositioning at this time, so she had no more leaks or complications, rather than a reversal. The Trust arranged a new booking form, changing the type of surgery to make the stoma more manageable and booked it for 22 May 2023. Mrs J’s surgery went ahead as planned.
38. The Trust sent us information showing its colorectal service had long waiting times for treatment, with some patients waiting more than 104 weeks. This backlog was due to the COVID-19 pandemic, as operations were stopped for weeks and only restarted for the most urgent patients. This was the reason why Mrs J waited so long for her operation. From the point the Trust could book her surgery in June 2022, she waited 49 weeks. Our adviser says this was a national issue affecting most trusts at that time.
39. We recognise that ideally, Mrs J would not have waited as long as she did for stoma revision surgery. In summary, we think there are good reasons this did not happen. She could not have had more surgery within six months of the original operation in July 2022. Then she needed to lose weight and stop smoking for surgery to be safe. She did lose weight and stopped smoking, and the Trust was able to list her in June 2022. Unfortunately, a combination of a surgical backlog due to the pandemic and Mrs J becoming unwell and needing steroids meant the surgery only took place 11 months later.
40. We can only imagine how difficult it was for Mrs J to have to wait this long for her surgery. We cannot say her wait was because the Trust did something wrong, or that there was anything more it could reasonably have done. The delays were unavoidable due to the exceptional situation nationally and the backlog the pandemic caused.
41. We appreciate how difficult things have been for Mrs J and hope she does not feel our decision in any way dismisses what she went through. We hope she can take some reassurance from knowing that the Trust acted as quickly as we could have expected it to.