East and North Hertfordshire Teaching NHS Trust

6. Mr R complains about aspects of the treatment the Trust provided to his sister, Mrs L between June 2023 to 23 September 2023. Specifically:

• it discharged and readmitted Mrs L several times when she was not fit for discharge and this delayed her diagnosis of pulmonary embolism (blood clot), kidney damage, and an upper intestinal bleed • it failed to monitor her nutritional needs • it delayed in transferring Mrs L to its intensive care unit • its communication with the family was poor • Mrs L was treated in different specialist departments; there was a lack of communication between the clinical departments and no holistic approach in her treatment plan.

7. Mr R says as a result his sister died. The events leading up to her death have compounded the family’s grief and distress. They are aggrieved the lack of monitoring of Mrs L’s nutritional needs led to her being malnourished and this impacted the overall care she received. The family are distressed by the level of communication it had with the Trust, and they were not fully involved or updated regarding her prognosis.

8. As an outcome Mr R is seeking service improvements and an acknowledgement of his complaint.

9. Mrs R was in her fifties at the time of this complaint.

10. She had multiple medical conditions, including a complex gastrointestinal history of Crohn’s disease (a chronic inflammatory bowel disease - IBD) with multiple laparotomies (surgical procedures) and malnutrition. She also had heart failure with preserved ejection fraction (a chronic condition where the heart muscle is unable to pump enough blood to meet the body’s needs).

11. She also suffered from chronic poor mobility, progressive frailty, chronic back pain, total knee replacement, and double incontinence. She also suffered recurrent cellulitis (a bacterial skin infection).

12. Mrs L attended the Trust on multiple occasions as an inpatient between June 2023 up to 23 September 2023, when she sadly died.

13. Mrs L’s death certificate stated spontaneous upper gastrointestinal bleed as the primary cause of her death. It also included acute kidney injury and frailty as secondary causes.

Communication

17. Mr R complains staff did not keep the family fully informed of Mrs L’s prognosis. He describes four days before his sister died, the Trust told the family she was fine.

18. In its response, the Trust apologised for the complaint and if the family considered staff did not discuss certain aspects of Mrs L’s prognosis with them. The treating doctor also apologised.

19. We note the Trust also said it has taken action to improve its services, specifically regarding communicating with family. It said it will ensure all complex assessments and discussions have full participation from a patient and their family, and clinical decisions are understood in real time.

20. The GMC guidelines state a clinician must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.

21. There are records of some discussions with Mrs L’s husband, but no documented explanations of her condition before her final admission, when she was clearly very ill. At this point there is evidence the Trust involved her husband in DNAR (do not attempt resuscitation) discussions and end of life plans.

22. Our gastroenterology adviser explains it is difficult to know how much involvement the family should have had in earlier discussions because Mrs L had capacity. The Trust’s communication would primarily be with her.

23. We appreciate the family were looking for clear information regarding Mrs L’s condition and prognosis and the Trust’s communication caused them frustration. A clinician’s initial priority is to communicate effectively with the patient if they able to understand and make decisions regarding their own health. As it became apparent Mrs L was deteriorating it was appropriate for the Trust to communicate with her next of kin. There is evidence it did this at the time of the DNAR and end of life plans.

24. We have found the Trust’s communication with family was in line with GMC guidelines.

Nutrition, Dietician Assessments and Holistic treatment

25. Mr R complains the Trust should have identified Mrs L’s serious conditions earlier, including lack of nutrition, pulmonary embolism, kidney damage, and the internal bleed. He complains there was no holistic or multidisciplinary approach to her treatment plan. He says this, along with the Trust’s delay in transferring his sister to its ITU, led to it missing conditions and this eventually led to her death.

26. ESPEN, NICE, BAPEN, and MUST guidance emphasise the importance of identifying and managing malnutrition in patients with complex Crohn’s disease. This includes nutritional screening, comprehensive dietetic assessment, regular monitoring of weight and nutritional status. It also includes consideration of dietary supplementation, enteral (tube) feeding or parenteral (nutrients pumped into the bloodstream via a drip) nutrition where appropriate. BDA guidelines explain a dietetic assessment should include clinical, dietary, and environmental information.

27. Our gastroenterology adviser explained people with Crohn’s disease are at risk of malnutrition. They said Mrs L was at a very high risk given she had previous anti-obesity surgery and had multiple bowel operations.

28. Medical records show Mrs L had low blood pressure, electrolyte disturbance (levels of key minerals in the body are too high or low affecting organ function) and low-grade acute kidney injury. These all suggest Mrs L was nutritionally challenged during the final few months of her life.

29. Staff documented Mrs L’s weight in each admission assessment as well as the risk for having a high BMI. A high BMI of 30 or higher is classified as obesity, indicating an increased risk for various health conditions.

30. From 5 June to 14 September, Mrs L’s weight dropped from 95kg to 87kg. This took her BMI from over 30 to under 30. After this, staff did not record her weight.

31. Mrs L’s serum albumin was 26g/L on 8 August and fell consecutively with each admission, reaching a low of 19g/L on her final admission. Albumin is the main protein in the blood and a falling level in this context is a sign of nutritional failure. For comparison, a normal level for a well-nourished woman in her fifties, would be around 40g/L.

32. Our gastroenterology adviser said an echocardiogram on 10 July showed good cardiac function. It is likely the oedema (swelling due to fluid build-up) on her leg was due to her low albumin and in turn was due to signs of malnutrition. This should have prompted a nutrition assessment as per ESPEN and NICE guidelines for nutritional/dietician support.

33. We asked our gastroenterology adviser whether the Trust had implemented a holistic approach in Mrs L’s treatment plan.

34. The Trust admitted Mrs L to its acute medicine and gastroenterology wards. Gastroenterology staff reviewed her care but focused on her Crohn’s disease instead of addressing the broader reasons for her deterioration.

35. In August, the Trust held a multi-disciplinary team (MDT) meeting but did not address Mrs L's malnutrition, despite diagnosing protein-energy malnutrition in June. Staff only mentioned her nutrition again in September during her final admission.

36. Our gastroenterology adviser highlighted the Trust should have recognised Mrs L’s malnutrition risk much earlier. Her leg oedema falsely elevated her weight, giving staff a false sense of reassurance. Identifying Mrs L’s malnutrition early, along with her history of weight loss surgeries and Crohn’s disease, was crucial.

37. The Trust overlooked clear signs of malnutrition from June, missing the chance to prioritise it.

38. In August, MRI and CT scans confirmed active small bowel disease. Given Mrs L’s history, the Trust needed to organise an MDT discussion urgently to address her malnutrition. Active Crohn’s disease increased her risk, making a thorough assessment essential.

39. The MDT should have included inflammatory bowel disease specialists, nutrition experts, and medical teams. The MDT also required input from dietitians, nutrition specialists, and a consultant.

40. We have seen no evidence an MDT involved this different input. This is not in line with the GMC Code to provide a good standard of practice and care in arranging prompt investigations and consulting with colleagues.

41. The records show the Trust made two dietician referrals on 8 June and 22 September respectively and there was input from a dietician on 13 June.

42. Our dietician adviser noted the dietician input on 13 June was lacking some essential information in an appropriate dietetic assessment. It did not include Mrs L’s reported weight, BMI, percentage weight loss, or nutritional requirements. There was no information regarding a review of the nutritional interpretation of Mrs L’s blood test results or her nutritional intake as per her food charts.

43. Our dietician adviser also said the dietetic assessment should have detailed information and advice for ward staff regarding suitable dairy free snacks Mrs L could have on the ward. It should also have included a request for ward staff to monitor specific bloods that the dietetics team should have reviewed.

44. We note there was no refeeding risk assessment. Our dietician adviser explained this is of particular concern as this is a potentially serious condition if not managed appropriately.

45. Our dietician adviser explained the Trust should have implemented a refeeding plan to provide Mrs L with a slow reintroduction of oral solids and refeeding medications. With a two stone weight loss, increased vomiting and diarrhoea, and reported poor oral intake, it is likely a refeeding risk was present, and the Trust should have managed this.

46. They further explained the Trust’s dietetic assessment should have considered the suitability for nutritional supplementation or fortification once the refeeding risk had been managed.

47. Supplementation is the use of prescribed nutritional products to provide extra calories and protein on top of normal nutritional intake from food and fluids. Fortification is the addition of high calorie, small volume food such as butter, cream, cheese, honey, syrups, jams, to boost the nutritional content of the food.

48. Our dietician adviser also noted there was no onward referral to the community dietetic team for Mrs L to receive ongoing nutritional support, when she was back at home following each discharge.

49. Additionally, the Trust made no dietetic referrals for Mrs L’s interim admissions during July and August. With reports of an initial two stone weight loss, and a three stone weight loss in September, it is reasonable to assume Mrs L would have presented with similar levels of weight loss in her interim admissions. Given her ongoing difficulties with eating, this should have triggered a referral for Mrs L to receive nutritional support to manage her weight loss and poor appetite.

50. The records show the Trust raised concerns on 14 September regarding Mrs L’s significant weight loss of three stone and her poor oral intake. Our dietician adviser said this should have triggered an urgent referral. The Trust did not make this referral until 21 September. This is an unreasonable delay, which meant the Trust did not complete a timely dietetics assessment for Mrs L.

51. We have provisionally found the Trust missed opportunities to treat Mrs L’s poor nutritional state and it did not complete dietetic and nutrition assessments in line with ESPEN, NICE, BAPEN and BDA guidelines.

52. We have found the Trust did not recognise Mrs L was malnourished throughout the four month period. We will consider the impact of these failings below.

Discharge

53. We asked our gastroenterology adviser if the Trust’s repeated decisions to discharge Mrs L were clinically sound. They told us there are no specific issues regarding the individual discharges, in that the Trust made each decision after completing a discharge assessment of Mrs L’s ability to self-care, which she was able to do at home.

54. The failing we have identified here is during Mrs L’s multiple admissions, the Trust did not recognise Mrs L was malnourished. Mrs L required monitoring and a focused multidisciplinary treatment plan to reverse her nutritional status. We will consider the impact of this further below.

Delay in diagnosing pulmonary embolism, kidney damage, upper intestinal bleed and ITU treatment

55. We next asked our gastroenterology adviser if the Trust delayed in diagnosing Mrs L’s pulmonary embolism, kidney damage, and upper intestinal bleed.

56. They explained throughout Mrs L’s care she had borderline renal function. They said there is appropriate evidence of the Trust managing this with the balance between her treatment to reduce the build-up of excess fluid and her kidney function.

57. Our gastroenterology adviser noted Mrs L was relatively immobile, she had a heart disorder with a high risk, Crohn’s disease, and a leg oedema. On this basis, she was at high risk of deep vein thrombosis (DVT) and pulmonary embolism.

58. There is evidence on the records, the Trust considered the risk of this during all her admissions and provided appropriate treatment to prevent blood clots. This is in line with the GMC Code to provide a good standard of practice and care.

59. Despite this, her CT scan dated 16 August showed blood clots. Our gastroenterology adviser is of the opinion the upper intestinal bleed was a sudden event with no warning and little opportunity to intervene.

60. We have found no delay in the Trust’s diagnosis of the three conditions. However, Mrs L's malnutrition is likely to have worsened her deterioration and frailty.

61. Mrs L’s estimated clinical frailty score (CFS) was between six and seven. The CFS is a tool used to evaluate the overall level of frailty in patients by assessing their functional status, comorbidities, and cognitive abilities. The score ranges from one (being very fit) to nine (terminally ill).

62. The Springer Nature journal explains the CFS is a good indicator of risk of death and critical care survival, especially when coupled with multiple comorbidities and prolonged hospital stay.

63. We asked our critical care adviser about Mr R’s concerns the Trust delayed in transferring his sister to its ITU. The records show during Mrs L’s final admission, the Trust initially refused admission to its ITU.

64. Our critical care adviser noted despite Mrs L being on the short stay unit, the critical care outreach team (CCOT) regularly saw her alongside the medical team on the short stay unit. The CCOT provides care outside of critical care and monitors the progress of patients.

65. As Mrs L’s condition deteriorated the CCOT became more involved and it eventually commenced palliative care. This is in line with the GMC Code in arranging prompt investigations and consulting with colleagues. We have found no failings here.

Impact

66. We have found the Trust failed to recognise Mrs L was malnourished. The Trust missed opportunities to correct Mrs L’s poor nutritional state over a four month period. This included poor dietetic assessments and missed opportunities to refer for nutritional support.

67. We know this will be extremely upsetting for Mr R and his family to read. We recognise they had serious concerns about whether the Trust provided appropriate treatment to Mrs L during her admissions.

68. We asked our gastroenterology adviser if the failings we have identified contributed to or caused Mrs L’s death. They are of the view Mrs L’s nutritional state was more likely than not a contributory factor to her death. Her lack of nutritional reserve was a reason she was in a weaker, frailer state, and the records demonstrate she could not care for herself at home.

69. They further explained a CT scan taken in August showed subsegmental pulmonary artery emboli (blood clot in the pulmonary artery which carries blood from the heart to the lungs). This suggests Mrs L’s dizziness was not related to DVT. Our gastroenterology adviser is of the view Mrs L’s high blood pressure, electrolyte disturbance and kidney impairment are on the balance of probability, a likely consequence of her nutritional failure.

70. Whilst we are unable to say definitively that Mrs L would not have suffered the pulmonary embolism, kidney damage and upper intestinal bleed had the Trust treated and reversed her malnutrition, we understand malnourishment can make these conditions worse.

71. The ESPEN guidelines highlight malnutrition is a ‘considerably greater’ problem in Crohn’s disease. Recommendations four and five of the guidance states, ‘patients with IBD are at risk and therefore should be screened for malnutrition at the time of diagnosis and thereafter on a regular basis. Documented malnutrition in patients with IBD should be treated appropriately because malnutrition worsens the prognosis, complication rates, mortality, and quality of life.’

72. Similarly, the Science Direct journal found malnutrition is an independent risk factor impacting on complications, increased mortality and length of hospital stay.

73. The International journal of clinical practice found malnutrition is significantly associated with the risk of developing acute kidney injury (kidney damage).

74. Our gastroenterology adviser agreed the primary cause of Mrs L’s death was gastrointestinal bleeding. They explain it is not clear if improving Mrs L’s nutritional state or changing the treatment for her Crohn’s disease would have prevented the bleeding, but her resilience would have been significantly greater had she been adequately nourished.

75. Our critical care adviser explained had the Trust recognised and provided appropriate nutritional support for Mrs L, it may have taken three to four months to improve her nutritional status, and it could have significantly improved her frailty and resilience. Therefore the Trust should have recognised and acted on this early on in Mrs L’s hospital admissions.

76. They further explained the risk of pulmonary embolism and gastrointestinal bleed is not typically increased in patients with malnutrition but the ability to recover from these conditions is reduced. Whereas the chances of developing acute kidney damage in malnutrition is higher and the recovery from this is reduced.

77. We have found there were missed opportunities to address Mrs L’s poor nutritional state, which is likely to have contributed to her deterioration over the four-month period.

78. While we cannot be certain that had the Trust avoided the failings it would have prevented Mrs L’s death, it is more likely than not, these failings contributed to her death. This is because Mrs L had a complex medical history and on balance there was a missed opportunity for a better outcome, but we cannot conclude this would have changed the clinical outcome.

79. Mr R and his family will be left never knowing if these could have made a difference, which is a significant injustice. We have also seen these failings likely contributed to increased pain and discomfort for Mrs L during the last few months of her life.

80. If the failings had not happened, we consider this would have made a difference to Mrs L and her family. Mrs L would not have become as weak or frail and may have had the resilience for intensive care treatment. At the very least she would have understood the cause of her deterioration and received a comprehensive support plan to improve her nutritional status.

81. This would have also prevented an adverse emotional impact on her family, as they had to witness the deterioration in Mrs L’s weight, appetite, and oral intake. This is likely to have caused significant distress in an already challenging time. Additional support may have also been provided to the family with skills and knowledge to help manage Mrs L’s nutrition.

82. We recognise these failings have caused Mr R and his family a great deal of distress and upset and left them with outstanding questions. We are very sorry to hear about this, and we hope our findings provide the family with some reassurance.

1. Mr R complains about the care and treatment East and North Hertfordshire NHS Trust (the Trust), provided to his sister, Mrs L between June 2023 to September 2023. We are very sorry to learn about his concerns and for the loss of his sister. We recognise this has been an incredibly upsetting time for the family.

2. We have found the Trust has already done enough to put right Mr R’s complaint regarding communicating with family and keeping them updated regarding Mrs L’s condition and prognosis.

3. We have found there were missed opportunities for the Trust to recognise Mrs L was malnourished over the entire complaint period. We found the Trust’s dietetic assessment was not in line with national guidelines, and it missed the opportunity to provide nutritional support to Mrs L.

4. We have found it is more likely than not the failings we have identified contributed to Mrs L’s deterioration during the complaint period. We cannot say, had the failings not occurred, it would have prevented Mrs L’s death because she had a complex medical history. We recognise this has caused Mr R and his family a significant amount of distress and uncertainty.

5. We therefore partly uphold Mr R’s complaint. We recommend the Trust writes to Mr R with an acknowledgement of his complaint and to produce an action plan to show what it will do to improve its services.

83. We make recommendations in line with our Principles for Remedy which say public bodies should acknowledge failures, apologise, make amends, and use the opportunity to improve their services.

What we found

84. Through investigating Mr R’s complaint, we have found the Trust failed to identify Mrs L was malnourished over a four month period. We have found the Trust’s dietetic assessment was poor and it missed opportunities to refer Mrs L for nutritional support. This contributed to her deterioration and her frailty.

What the organisation should do

85. Our Principles for Remedy say organisations should acknowledge poor service and take steps to put things right when this leads to an injustice or hardship.

86. By bringing this complaint to us Mr R would like service improvements and an acknowledgement of his complaint.

87. We first considered what action the Trust has taken in response to Mr R’s concerns. We understand it has apologised and put in service improvements regarding communicating effectively with family.

88. It is positive the Trust has recognised it needs to improve its communication with a patient’s family. This does not in itself remedy the provisional failings we have identified.

89. For the Trust to learn from this complaint and ensure a similar complaint does not arise, service improvements should be made within its gastroenterology, nutrition, and dietetics teams.

90. Therefore, following this review, we recommend the Trust:

• creates an action plan that sets out what it will do (or what is has already done since the events) in response to the failings identified in this report.

• should write to Mr R to acknowledge where it got things wrong, within four weeks of the date of our final report. It should recognise the impact this had on the family.

91. The action plan should say who is responsible for each action, when it will be completed and how the impact of the actions will be monitored. The Trust should complete this within 12 weeks of the date of our final report and share a copy of it with us, Mr R, the Care Quality Commission and NHS England.

92. Very sadly nothing can change the distressing events surrounding Mrs L’s death. We hope Mr R and his family can take some comfort from our investigation and the action we have asked the Trust to take, to remedy his personal injustice and to prevent this from happening to anyone in the future.

93. Complaints give us a valuable insight into the organisations we investigate. We are very grateful for Mr R bringing the complaint to us and are mindful of how difficult this must have been to share with us.