Barnsley Hospital NHS Foundation Trust

4. Mr L complains about the management of his Crohn’s disease by the Trust from September 2020 to July 2021. He complains that the Trust failed to promptly arrange alternative treatment and medication for his Crohn’s disease.

5. Mr L says the Trust failed to improve his Crohn’s disease and instead made it worse. He says he has been left in agony due to the mismanagement of his treatment, resulting in him having an invasive open surgery to have a stoma bag (a surgically created opening on the abdomen that allows bodily waste (faeces or urine) to be diverted out of the body and collected in a bag).

6. Due to this, he says he has needed repeated admissions and has had to take time off work, and this has affected his family finances. He says this whole experience has been mentally draining, leading to both stress and ill health over a prolonged period.

7. Mr L would like compensation to make up for the distress he experienced, life changing issues he now has and loss of wages. Furthermore, he would like service improvements so the same does not happen to anybody else.

8. Mr L was diagnosed with Crohn’s disease in 2015. He first attended the Trust for management of his Crohn’s in January 2018.

9. Mr L called the Trust’s inflammatory bowel disease (IBD) helpline in early September 2020, after experiencing a flare up of his Crohn’s disease that had lasted around three weeks. In the year prior to this, he had not been taking his prescribed medication (due to his concerns about side effects) or having the blood tests the Trust recommended.

10. The IBD helpline told Mr L he would need to have blood tests done, to have a repeat colonoscopy (which was arranged for late September), and to change his diet. Staff advised him to call again or attend the emergency department (ED) if his symptoms worsened.

11. Mr L attended the ED in mid-September as he continued to experience flare-up symptoms including abdominal discomfort and cramps. Staff transferred him to an Acute Medical Unit (AMU) for review by a gastroenterologist. The Trust treated him with intravenous fluids, steroids, and painkillers before he improved, and it discharged him.

12. In late September, Mr L had an endoscopy/colonoscopy at the Trust. This did not give a clear view, and the Trust planned to repeat it.

13. Later that week, Mr L attended the ED again as he was still experiencing symptoms and was ‘unable to cope with [the] pain’. Staff recorded that his flare-up had been ongoing for six weeks and was ‘not settling’. They recorded that Mr L wanted pain relief and steroids to control the flare-up until a more permanent solution could be discussed. They prescribed these, as well as a Proton Pump Inhibitor (PPI, medication to reduce the amount of stomach acid). The Trust also arranged an abdominal X-ray (which showed no evidence of perforation or obstruction), before discharging him.

14. In early October, he had another colonoscopy. This showed an inflamed area in part of his small intestine. The report showed that there was no ulceration or bleeding, and that the rest of his colon looked normal apart from one 2cm area.

15. In mid-October, Mr L’s case was discussed at the Trust’s multi-disciplinary team (MDT) meeting. Staff recorded that he needed an MRI scan and scheduled this for November.

16. In early November, Mr L called the IBD helpline with worsening pain. The Trust prescribed him a reduced course of steroids and advised him to attend the ED if his symptoms worsened.

17. Mr L had an MRI scan a few days later. This found active Crohn’s disease around his small intestine and an associated inflammatory mass/abscess. The Trust discussed his case at an MDT the next week and wrote to his GP. Staff explained he had ‘significant small bowel disease’ but had not experienced any fever. They explained he had been responding well to steroids and should now be started on a course of oral antibiotics.

18. Mr L attended the ED again in mid-December and was admitted due to ongoing pain and hot/cold flushes. Staff noted there was ‘no indication for immediate surgical intervention’. The Trust performed a CT scan which showed an ‘inflammatory mass…at the site of the complex pelvic fistula that involves the colon and ileum’. The report noted it looked more inflamed than on the previous MRI and that there were ‘traces of free fluid’ in the pelvis.

19. In early January 2021, Mr L was readmitted to hospital with an infection and severe abdominal pain. The Trust performed another abdominal X-ray which showed he had ‘faecal loading’ (where stool accumulates in the rectum due to constipation). His case was discussed in an MDT, and he was referred internally for consideration of surgery.

20. The Trust then discharged Mr L to await surgery at another trust. This took place in late January and involved removing part of his colon and a stoma (a surgically created opening in the small intestine, where waste is collected in a pouch worn on the stomach).

21. In July, Mr L then had surgery to reverse his stoma and reconnect the bowel.

Management of Crohn’s disease

27. Mr L says instead of improving his Crohn’s disease, the Trust made it worse. He explained the Trust failed to notice that he was not responding to steroids and that this was an indication something more serious was going on. He also feels the Trust failed to consider surgery quickly enough.

28. In responding to the complaint, the Trust explained that staff performed a series of tests to make sure Mr L was on the right medication. It explained that steroids are generally used in the short term to settle an acute flare up of Crohn’s.

29. In considering whether the Trust did anything wrong, we considered the accounts of both parties, Mr L’s medical records, and the view of our advisers.

30. We recognise that the events of this complaint took place during the early stages of the COVID-19 pandemic. This was a challenging time for all NHS organisations.

31. We can see from the records that Mr L had Crohn’s disease for several years prior to the events detailed in this complaint. About a year before he contacted the IBD helpline in September 2020, he had stopped taking the medication for his Crohn’s because of concerns about side effects.

32. Our advisers explained that, because of this, Mr L’s Crohn’s disease would likely have been worsening silently during this period, leading to him experiencing abdominal pain in September.

33. When Mr L called the IBD helpline, the Trust arranged for a colonoscopy and advised him to attend the ED if his symptoms worsened. He was then admitted to hospital as an emergency later that month. The records show that he then contacted the IBD clinic for advice on a number of occasions after he was discharged.

34. Our advisers gave their view that the Trust acted in line with BSG standards up to this point, as these state that patients experiencing a flare up should have access to an IBD team.

35. Mr L had a colonoscopy in late September, and this was repeated the next month. The October colonoscopy showed inflammation in part of the small intestine. An MRI scan that then took place in November showed active Crohn’s and an inflammatory mass/abscess. Our advisers explained the Crohn’s disease had worked its way through the wall of the bowel over a number of months and this led to the inflammatory mass.

36. Just before he had the MRI, Mr L called the IBD helpline to report worsening pain. The Trust prescribed him further steroids.

37. Our advisers felt this was the wrong thing for the Trust to do. They explained that, whilst steroids can help with symptoms, Mr L had recently had two courses of steroids, and these do not help with remission.

38. They noted that BSG guidance states that repeated courses of steroids should be avoided and that this is confirmed by the journal articles listed. Information from the BMJ explains that steroids are unable to heal the bowel, and the Inflammatory Bowel Diseases journal explains that repeated courses of steroids are not recommended.

39. Our advisers felt the Trust should have considered other treatment, such as long-term high-dose antibiotics to treat the underlying infection and inflammation, a change in diet, or adalimumab (a medication to treat inflammation that Mr L had previously taken). NICE guidance (1.2.12) states that adalimumab is recommended ‘for adults with severe active Crohn's disease whose disease has not responded to conventional therapy (including immunosuppressive and/or corticosteroid treatments).’

40. They also explained the Trust should have considered surgery at that point, and certainly after his MRI showed active Crohn’s and the mass/abscess. They explained that this should have been discussed jointly with surgeons to decide on the best way forward.

41. The BSG states ‘The IBD multidisciplinary team (MDT) should include a core membership consisting of gastroenterologist, colorectal surgeon, IBD specialist nurse, radiologist, dietitian, histopathologist and pharmacist, all of whom should have expertise in IBD.’

42. In the Trust’s response, it mentions that surgical intervention would be considered at the IBD MDT meeting (which took place shortly after the MRI in November); however, upon review of the IBD MDT list of attendees, we cannot see that a colorectal surgeon was present nor is there any indication that surgical intervention was discussed during the meeting.

43. We find the absence of a surgeon in the IBD MDT meetings was not in line with the BSG guidelines. Due to this, despite the lack of improvement on both steroids and short-term antibiotics, the Trust also failed to consider and propose surgery as a potential treatment option to manage Mr L’s Crohn’s disease.

44. We have gone on to consider the impact of this and whether Mr L’s outcome might have been different.

Impact on failings

45. Mr L told us he missed the chance for keyhole surgery, and had to have an invasive open surgery to have a stoma bag fitted, leaving a huge scar down the middle of his stomach. He explained this could have been avoided if the Trust had managed his condition properly.

46. He explained he had repeated admissions with extended lengths of stay in hospital, time off work, an operation which he believes may have been unnecessary, lengthy recovery time, and weeks of physical pain. We are sorry to hear of how significantly he was impacted.

47. In considering the impact of the above failing, we have considered Mr L’s medical records and the view of our advisers.

48. Our advisers (A&B) explained that even prior to the events of this complaint, Mr L had a number factors which meant he was in a higher risk group for a poor outcome from his Crohn’s disease. They explained his Crohn’s had affected both his small and large intestine in the past and that he had risk factors such as a history of smoking. They explained that, by the time Mr L presented with abdominal pain in September 2020, around a year after stopping Crohn’s treatment, surgery was very likely to be needed anyway.

49. Our Adviser C explained that surgery should have been considered following the abdominal MRI scan in early November. We can see in Mr L’s records that the CT scan performed in December showed that his condition was worsening, and it was at this point that the Trust sought surgical input from its surgical team (who were not part of the IBD discussion). We can see that the advice given from its surgeons was that urgent surgery was not clinically indicated and a referral will be made on discharge.

50. Our adviser C explained that it is very likely that the surgery would have been the same, given the complexity of the disease. They explained that for patients who have been on steroids, it is advised to have a temporary stoma, which is supported by the ECCO guidelines. They explained that once the decision to operate was made, planned urgent surgery was appropriate and would normally be scheduled within four to six weeks, which was consistent with the timing of Mr L’s surgery.

51. While we can see that earlier consideration of surgical intervention should have been discussed, the advice we have received shows that this would not have altered the ultimate outcome. Even if surgery had been discussed earlier, Mr L would still have required the same complex procedure, and the timing of the surgery itself would not have significantly changed.

52. Therefore, we cannot see a clear link between the failings we have identified, and the impact Mr L has experienced. The evidence indicates that the prolonged symptoms and inability to work were as a result of his underlying condition rather than a delay that altered the clinical outcome.

53. Our ‘NHS Complaint Standards’ says that wherever possible, staff should explain why things went wrong and identify suitable ways to put things right for people. It also says that organisations should look at what action they can take to learn from the experience to continuously improve services for everyone.

54. We are pleased that the Trust has now updated its IBD MDT to include regular representation from a colorectal surgeon, ensuring surgical input into similar cases. We consider this to be in line with Our Standards.

55. It is clear that Mr L has been through a great deal, and we can see why he feels that his care at the time did not reflect the urgency of his situation. We hope that he feels reassured that the service improvement the Trust has made as a result of his complaint, will benefit others in the future.

1. We have investigated Mr L’s complaint about Barnsley Hospital NHS Foundation Trust (the Trust)’s management of his Crohn’s disease (a chronic inflammatory bowel disease) from August 2020. We are sorry to hear that his experience has been distressing, and he has been worried that earlier surgical intervention may have prevented him from undergoing open surgery.

2. Having considered the evidence available to us, we found the Trust initially managed his condition well, by ensuring Mr L had scans and access to a clinic. However, Mr L’s November MRI scan then showed significant active Crohn’s disease. At this point, the Trust should have prescribed him different medications and considered surgery. Instead, it continued to prescribe him steroids. We found this to be a failing.

3. By the time he had presented in September 2020, Mr L was always likely to need surgery, and it is likely that surgery would have been the same. Due to this, we have decided to partly uphold the complaint and can see the Trust has already taken action to put this right and improve its services.