East Suffolk and North Essex NHS Foundation Trust

5. Mr E complains about the service he received from East Suffolk and North Essex NHS Foundation Trust (the Trust) between mid- September 2023 and early November 2024.

6. He says when he contacted the IBD (inflammatory bowel disease) helpline in mid- September 2023 a nurse did not assess, diagnose and treat him correctly, and did not arrange for a clinician to see him in person.

7. Mr E says as a result his IBD flare-up took longer to settle meaning he was in more pain, he was restricted in his daily activities and was unable to work. He also says he suffered increased anxiety.

8. Mr E also complains about the way the Trust handled his complaint. Specifically, he says: • following a meeting it did not arrange for a nurse to meet with him in a timely manner to discuss his medication or arrange for a specific member of staff to accompany him to a meeting with a consultant • it used a regular review appointment with a consultant in mid-August 2024 to address his concerns rather than arrange a specific meeting and did not communicate this to him • it told him he does not have IBD.

9. Mr E says because of the complaints process his anxiety and distress increased and his faith in the Trust was further damaged. He says he was also left feeling he did not have the right support to manage his IBD condition.

10. Mr E would like the Trust to acknowledge what happened, make service improvements and pay him financial compensation. He would also like the Trust to put right his injustice by providing the right support for his IBD condition.

11. Mr E was in his late fifties at the time of the events.

12. Mr E had a history of ulcerative colitis. Ulcerative colitis causes swelling and ulcers in the lining of the large intestine. It is a form of IBD (inflammatory bowel disease) which is a term used to describe conditions that cause severe stomach pain and diarrhoea.

13. On two consecutive days in mid-September 2023, Mr E made contact with the IBD helpline at the Trust in relation to on-going abdominal pain.

14. Between end of September 2023 and December 2024 Mr E engaged with the complaints process at the Trust including attending a meeting with staff in early February 2024.

Care and treatment

18. Mr E says an IBD specialist nurse did not assess him properly when he called the IBD helpline in September 2023. He says they diagnosed constipation rather than a flare-up of his IBD condition, told him he did not need to take previously prescribed steroids and did not arrange for a clinician to see him in person. Mr E is also concerned the assessment was too brief and that NHS websites do not support the nurse’s diagnosis of constipation.

19. The Trust said the nurse took account of Mr E’s symptoms and their diagnosis of constipation was appropriate. It also said the nurse considered the results of a blood test from early August and a recent faecal calprotectin result which did not give cause for concern. A faecal calprotectin test measures the level of calprotectin (a protein released by white blood cells) in a person’s stools. The Trust said the results of the recent faecal calprotectin result did not warrant a course of steroids.

20. The Trust acknowledged that the nurse did not record all information discussed during their telephone consultation with Mr E in the subsequent letters they sent.

21. Mr E spoke to a member of staff on the IBD advice line in mid-September 2023 in order to find out the correct email address to send questions to. The staff member provided this.

22. Later that day, Mr E emailed the IBD service for some advice and outlined his medical history.

23. The next day an IBD nurse specialist spoke to Mr E about his condition. Mr E also emailed some further information to the nurse afterwards.

24. The records show Mr E was a known patient with ulcerative colitis. He presented with symptoms of left sided lower abdominal pain, sweating and fatigue which had happened for a number of weeks. The nurse considered previous test results and documented that they would arrange for Mr E to be followed up in a consultant clinic but did not specify when.

25. Mr E also reported he had mouth sores (which he sent pictures of to the nurse) and hand tremors. The nurse advised Mr E to contact his GP about these specific symptoms ‘as they do not seem related to ulcerative colitis’.

26. Our nurse adviser outlined how symptoms of ulcerative colitis include diarrhoea, needing to frequently pass stools, tummy pain and fatigue. Sufferers of this condition can go extended periods of weeks or months with very mild symptoms or even none at all but these can be then followed by periods where the symptoms are particularly troublesome. They explained that such challenging periods are known as flare-ups and at these times patients can also experience symptoms elsewhere in their body including mouth ulcers.

27. This is supported by NHS website, Ulcerative colitis.

28. Our nurse adviser said given Mr E’s history of ulcerative colitis and based on the severity of the multiple symptoms of this condition he presented with, the nurse should have considered it was a flare-up. Even though previous test results were negative, they explained Mr E was displaying symptoms of ulcerative colitis and had been for several weeks. Our nurse adviser outlined how the nurse should have referred Mr E for an immediate face to face clinical examination to assess his symptoms further, ahead of diagnosis. They further explained that a clinical examination was needed to support the diagnosis of constipation in this situation.

29. NMC, The Code, states nurses should accurately identify, observe and assess signs of normal or worsening physical health in the person receiving care and make timely referrals to another practitioner when any action, care or treatment is required.

30. We consider the nurse did not follow NMC guidance when Mr E contacted the IBD helpline service. This is because, based on the nurse’s understanding of the situation, they did not fully consider that Mr E’s presenting symptoms could be ulcerative colitis and failed to refer him for an immediate face to face clinical examination. We find this is evidence of a failure. We will go onto consider the impact further below.

31. We also understand from our nurse adviser that given the nurse should have arranged a face to face examination ahead of diagnosis and any further treatment, they should not have recommended Mr E take steroids at this time.

32. NMC, guidance also outlines how nurses should keep clear and accurate records.

33. Informed by our nurse adviser, we consider the nurse did not accurately record the telephone discussion they had with Mr E in line with this guidance which is also evidence of a failure.

Impact

34. Mr E says because of what happened his IBD flare-up took longer to settle meaning he was in more pain, he was restricted in his daily activities particularly because he needed to be near toilets and was unable to work. He also says he suffered increased anxiety because he did not know how he was going to get better without the support of the IBD service. He says his distress was increased further because the nurse wrote to his GP about his change of diagnosis.

35. We asked the Trust about Mr E’s medical history before he contacted the IBD helpline in September 2023.

36. The Trust told us Mr E did not have a confirmed diagnosis of IBD when he called the helpline.

37. It explained: • Mr E’s first appointment at the Trust was in 2006 following a referral from his GP so that staff could monitor his diagnosis of ulcerative colitis which a different hospital had previously diagnosed • in 2010 Mr E had a colonoscopy (his most recent to date), which showed no evidence of IBD • by mid-2012, the Trust, after reviewing all of Mr E’s records, decided his diagnosis was irritable bowel syndrome with microscopic colitis – not ulcerative colitis • following this, the Trust arranged yearly follow-ups for Mr E where his diagnosis remained low grade colitis.

38. The Trust sent us evidence of Mr E’s medical history before September 2023 and his records up to early 2025.

39. We asked our consultant adviser about the difference between ulcerative colitis, low-grade colitis and microscopic colitis.

40. Ulcerative colitis is a very specific diagnosis where there is severe inflammation of the colon. This is visible to clinicians as ulcers on the lining of the colon when performing a colonoscopy. Biopsies are then used to confirm this diagnosis.

41. Low- grade colitis and microscopic colitis are both conditions involving inflammation of the colon but the inflammation is less severe than ulcerative colitis. Neither condition can be seen via a colonoscopy. Clinicians take biopsies during colonoscopies which are examined under the microscope to diagnose these two conditions.

42. Microscopic colitis is a definitive diagnosis established on account of specific cell changes being identified under a microscope.

43. Low-grade colitis is a non-specific descriptive term rather than a specific diagnosis. Even when viewed under a microscope, there are no specific indicators to determine this diagnosis and patients are diagnosed with this condition when clinicians have ruled out other conditions.

44. Neither low-grade colitis nor microscopic colitis are types of IBD.

45. Our consultant adviser explained that at times the historical medical records provided by the Trust incorrectly refer to microscopic colitis instead of low-grade colitis.

46. Our consultant adviser further explained there is no evidence since 2012 that Mr E had ulcerative colitis. They also said that more recent calprotectin levels do not meet the criteria for showing severe inflammation. They outlined how the Trust had offered Mr E another colonoscopy which would be needed to diagnose ulcerative colitis but he had declined this.

47. In addition, we understand from our consultant adviser that there are no biopsy results indicating Mr E had microscopic colitis in this period or that another condition was causing his inflammation. They said it is likely Mr E’s inflammation is low-grade colitis.

48. We are satisfied there is no clinical impact from the nurse failing to refer Mr E for a clinical examination or record the telephone conversation. This is because there is no evidence between 2012 and early 2025 that Mr E has IBD.

49. We are pleased to hear from Mr E that he approached his GP again in the days after the phone call about his care and treatment. We appreciate this is not something he should have had to do and this will have caused him distress.

50. We recommend the Trust takes action to recognise this impact on Mr E as well as to ensure improvements are made. We have outlined our recommendations at the end of this report.

51. We note Mr E came to us wanting the Trust to provide the right support for his IBD. He also told us that in a letter from a consultant earlier in 2023, the Trust told him that he could call the IBD helpline should he have any concerns with his condition.

52. The Trust told us that currently Mr E has access to the gastroenterology team (rather than the IBD specialist team) about any concerns he may have.

53. We asked our consultant adviser about this. They said the Trust is offering an increased level of safety-netting which it is not obliged to do in this situation. They explained that it would not be appropriate for Mr E to access the IBD service given he does not have this condition as its staff are trained to work within the parameters of IBD and not other inflammatory conditions.

54. We can see the Trust sent Mr E a letter earlier in 2023 in which it told him he had access to the IBD helpline. However well intentioned, we do not think this was the right thing to do for Mr E because he did not have IBD. This has caused confusion.

55. We are pleased to see that, by providing Mr E with access to the gastroenterology team, the Trust is now offering him an additional level of care in relation to his bowel inflammation We hope he is reassured by this and that his faith in the Trust will improve.

Complaint handling

56. Mr E complains about the way the Trust handled his complaint. He says following a meeting with Trust staff as part of the complaints process, the Trust did not arrange for a nurse to meet with him soon enough about his medication or arrange for a specific member of staff to accompany him to a meeting with a consultant.

57. Mr E further complains that the Trust used a regular review appointment with a consultant in mid-August 2024 to address his concerns rather than arrange a specific meeting. He says the Trust did not communicate this to him

58. Mr E also says the Trust told him that he does not have IBD.

59. In early February 2024, a senior member of the nursing team and a manager of the gastroenterology service held a video-conference meeting with Mr E to discuss his complaint and to find a way forward in terms of Mr E’s care and treatment.

60. During the meeting the Trust representatives agreed to arrange for one of the IBD specialist nurses, who had previously treated Mr E, to contact him and discuss medication and possible future treatment.

61. The Trust representatives also offered to arrange a face to face appointment with a consultant and explained that a member of the team would accompany Mr E should he wish. Mr E said he wanted to think about this. It was agreed that Mr E would contact the team if he wanted to take up this part of the offer.

62. About a week later, the Trust sent Mr E an email confirming what was agreed at the meeting.

63. In early May, Mr E emailed the Trust because the specialist nurse had not contacted him. In his email, he also explained that because of the time that had passed since the meeting he no longer wished to meet with the specialist nurse. Instead, he requested the Trust write to his GP about what had happened when he called the IBD helpline in September 2023.

64. The Trust acknowledged Mr E’s email the same day, apologised that he had not heard from the specialist nurse and explained that it would investigate. It was not until mid-August, following further prompting by Mr E, that the Trust emailed him saying it could ‘confirm the IBD team were spoken to following the complaints meeting and it was decided it was not an appropriate next step for them to contact you at this time’.

65. On two separate dates starting in early August and two weeks apart, Mr E emailed the Trust to ask what the purpose was of an appointment scheduled with a consultant for mid- August. He referred the Trust to the meeting in February stating ‘it was agreed before I considered this option I’d see how the first agreed action [with the specialist nurse] went’.

66. On a day in mid-August, Mr E attended the appointment with the consultant unaccompanied. At this appointment, the consultant talked to Mr E about issues with providing him with a diagnosis.

67. The following day, Mr E raised his concerns with the Trust again including about the appointment the day before.

68. In mid-September, the Trust sent an email responding to Mr E’s concerns. It said after the meeting staff decided it was not appropriate for the IBD nurse specialist to meet with Mr E because he did not have a confirmed diagnosis of IBD. It said it should have communicated this to Mr E and should not have suggested this would happen at the meeting.

69. In early November, following a further email from Mr E about his complaint, the Trust further apologised for not outlining there was change of plan following the meeting and also said it should have communicated about this before he attended the appointment with the consultant in mid-August.

70. The Trust also told us that it should not have offered Mr E the opportunity to meet with the IBD specialist nurse at the meeting in February given he did not have a confirmed diagnosis of IBD.

71. Our Principles of Good Administration outline how when organisations make a commitment to do something they should keep to it or explain why they cannot do so. It also explains how organisations should be helpful and deal with people promptly.

72. We consider the Trust did not act in line with our Principles. This is because it did not do what it said it would do during the meeting in February 2024 and, when it changed its mind, did not fully explain the reasons why to Mr E including on a date in mid-August when it emailed him. Furthermore, the Trust did not explain to Mr E about its proposed change of plan including informing him of the purpose of the appointment with the consultant in mid-August.

73. This is evidence of a failure. We go on to consider the impact further below.

74. We asked our consultant adviser about the appointment Mr E had with a consultant in mid-August. They explained that this appointment was likely part of the standard follow-up process for Mr E because if it was a specific part of the complaints process this would be indicated on the summary letter. This is not the case.

75. Our consultant adviser said there is no specific guidance in terms of the care and treatment clinicians should provide in this situation.

76. We understand from our consultant adviser that whether the appointment was part of the follow-up process or the complaints process, the care and treatment the consultant provided was appropriate. This is because they assessed Mr E’s symptoms which were stable. The consultant also explained to Mr E about the difficulties of providing a diagnosis given there was no evidence of ulcerative colitis and without the results of a recent colonoscopy, which the consultant offered.

77. Our consultant adviser also explained that the consultant correctly offered a colonoscopy to Mr E and when he was reluctant to accept this, they agreed to arrange a repeat calprotectin test with a follow up appointment. Our consultant adviser said the calprotectin test could show raised levels of inflammation but alone and without a colonoscopy this would not be enough to diagnose ulcerative colitis.

78. Our Principles of Good Administration state organisations must act in accordance with recognised quality standards, established good practice or both when delivering clinical care. Therefore, in this situation, we will use the professional judgement of our consultant adviser which is based on established good practice.

79. We are satisfied the Trust acted in line with our Principles in terms of the consultant’s appointment in mid-August as this was appropriate care and treatment for Mr E at that time.

80. We hope Mr E is reassured that the consultant’s actions at that appointment were what we would expect irrespective of whether the appointment was part of the complaints process or a standard follow-up appointment. The failure here, as outlined above, is that the Trust did not communicate with him about the purpose of this appointment before it took place.

81. As we have explained further above in this report, we are satisfied there is no evidence in Mr E’s medical records after 2012 that he had IBD. On that basis, we do not think the Trust did anything wrong in telling him this.

82. Our decision here is not made without recognising the challenging circumstances Mr E faced with his bowel condition at this time. Again, the failure we have seen relates to the way the Trust communicated with him following his complaint.

Impact

83. Mr E says he suffered increased anxiety and distress as a result of what happened during the complaints process and his faith in the Trust decreased. He also says he was left feeling he did not have the right support to manage his condition.

84. By the Trust agreeing for a specialist IBD nurse to meet with him this may have given Mr E the impression he had IBD and was not getting the support he needed. The Trust did not clarify this was not the case until much later and it also did not make it clear what the new plan was for him. We can therefore appreciate Mr E suffered distress as a result of the Trust’s actions.

85. We consider this is an injustice to Mr E.

86. Mr E came to us wanting the Trust to apologise, make service improvements and pay him financial compensation.

87. In its responses of mid-September 2024 and early November 2024, the Trust apologised to Mr E that it failed to communicate with him about why it changed its original plan from the meeting in February and for not relaying the change of plan to him.

88. Our Principles for Remedy say an apology means acknowledging the failure and accepting responsibility for it.

89. We consider the Trust acted in line with our Principles by providing a suitable apology.

90. In its responses to Mr E, the Trust also explained that as a result of the complaint the complaints team is working more closely with divisional (clinical) teams to ensure that communications related to complaints are shared through the complaints team.

91. Our Principles for Remedy say organisations should explain changes made to prevent poor service being repeated. We can see that it was members of the divisional team that met with Mr E in February 2024 and from the Trust’s complaint file that the complaints team did not get involved again until August.

92. We consider the Trust has taken appropriate action here in line with our Principles.

93. We recommend the Trust pays Mr E a financial remedy. We have detailed our recommendations at the end of this report.

1. We are very sorry to hear about the challenges Mr E has faced over a number of years in relation to his bowel condition and how what happened at the Trust affected him.

2. We have identified failings in the assessment an IBD specialist nurse carried out and in the way the Trust communicated with Mr E during the complaints process. We make recommendations for remedy as we consider there was an emotional impact to Mr E that the Trust has not yet fully put right. We explain these recommendations at the end of our report.

3. We did not identify a clinical impact from what went wrong.

4. We partly uphold Mr E’s complaint.

94. We make recommendations in line with our Principles for Remedy which are reflected in the NHS Complaint Standards. These say organisations should identify instances where things have gone wrong, take responsibility for these and find ways to put things right for those involved. They should learn from complaints to improve services.

95. We expect organisations to take action to compensate people appropriately if they cannot return them to the position they would have been in if the poor service had not occurred. In some cases, a financial remedy will be required. To decide on a level of financial remedy, we review similar cases where the person has experienced a similar injustice, along with our severity of injustice scale.

96. We find:

• a specialist nurse did not assess Mr E correctly on 19 September 2023 and document the telephone call properly. We consider this caused Mr E distress at the time.

• the Trust failed to communicate properly with Mr E following a meeting as part of the complaints process in February 2024. We consider this caused Mr E distress.

97. We recommend that the Trust: • writes within a month to Mr E to acknowledge what went wrong with his care and treatment on 19 September 2023 and apologise for the impact on him • explains within three months what action it will take, or has taken, to address the failing on 19 September. It should do this in the form of an action plan which should be shared with us, Mr E, and the Care Quality Commission (CQC).

98. We also recommend the Trust pays Mr E £200 within two months of our final report. This is in recognition of the extended distress he experienced as a result of the way the Trust communicated with him after the complaints meeting in February 2024.

99. In relation to the distress caused to Mr E as a result of the nurse’s assessment in September 2023, we consider an apology is sufficient to put right this injustice in line with level 1 of our severity of injustice scale. Mr E’s distress as a direct result of this failing was short term.

100. We ask the Trust to send us evidence it has completed all of the recommendations. We will check the action plan includes the reason for the failing, what the Trust does or will do differently in future, who is responsible for each action, the timescale for completion, and how it will be monitored.