University Hospitals Birmingham NHS Foundation Trust

4. Mrs H complains the Trust failed to administer Mr H’s medications and failed to manage his nutritional needs between December 2023 and January 2024.

5. Mrs H says the Trust’s failures meant Mr H deteriorated and lost out on the opportunity to have his planned heart surgery. She says having to witness this caused the family significant distress.

6. Mrs H would like to the Trust to acknowledge what it got wrong, apologise for the impact this had and make service improvements.

7. In 2023 Mr H was diagnosed a neuroendocrine tumour (NET) in his bowel that had metastasized to this liver and the tissue that supports the intestines. A NET is a cancer that develops in hormone producing cells. Mr H also had carcinoid heart disease (CHD). CHD is a type of heart disease where chemicals released from the tumour enter the bloodstream and damage the heart valves. The Trust accepted Mr H for heart surgery. This was subject to an improvement in his weight and muscle mass.

8. Four months later, Mr H presented to the Trust with jaundice, nausea and a loss of muscle mass. He had also lost 11.4 kg since his diagnosis. The Trust admitted Mr H to its liver ward with a plan to investigate his jaundice and improve his nutritional status for surgery.

9. Following his admission, the Trust referred Mr H to a NET dietician (a dietician who specialises in caring for patients with NETs). The Trust started Mr H on supplementary enteral feeding on day five of admission. This is when extra nutrition is given through an NG tube (a thin tube which is inserted through the nose into the stomach) alongside the person’s normal intake.

10. The Trust documented Mr H vomited his NG tube out four times between day five and day nine of the admission. It also documented Mr H declined NG feeding on day eleven and vomited the NG tube out on day thirteen. Following this Mr H declined NG feeding.

11. The Trust carried out a barium swallow test and provided Mr H with an NJT tube (a tube that is inserted through the nose and into the small bowel (beyond the stomach) on day 30. Mr H vomited this out on day 32. The Trust reinserted the NJT on day 37 and referred him to be considered for PN feeding. The Trust documented Mr H had a reduced oral intake throughout his admission.

12. On day 41 of admission Mr H sadly died of a metastatic small bowel neuroendocrine tumour.

Medications

16. Mrs H says there were occasions when the Trust did not administer Mr H’s medications. She feels if the Trust had done more to make sure he took them, Mr H might not have deteriorated so quickly.

17. The Trust apologised and said it could have done more to make sure Mr H took his medications.

18. GMC guidelines say clinician must prescribe drugs or treatment only when they have adequate knowledge of the patient’s health and are satisfied the drugs or treatment service the patient’s needs.

19. The Trust prescribed Mr H with fortijuice and renapro (nutritional drinks), creon (helps food to absorb), loperamide (reduces diarrhoea), metoclopramide (reduces sickness), and pancrex (helps digestion).

20. The records document the occasions when Mr H declined his oral medications. These medications were all related to increasing Mr H’s nutritional status.

21. The Trust documented Mr H declined to take his nutritional drinks, creon and loperamide on several occasions throughout the admission. It also noted Mr H declined metoclopramide on two occasions on days he was documented to be eating and drinking without concern and had no complaints of nausea. The Trust documented Mr H declined pancrex twice during admission and that this was not administered when his enteral feed was not running.

22. We recognise Mrs H’s concern the Trust should have done more to make sure Mr H was taking his medications. It must have been very worrying for her considering Mr H’s suitability for heart surgery depended on an improvement in his nutritional status and weight.

23. Our adviser said as Mr H had a NET with liver metastasis and carcinoid heart disease, this meant his prognosis was poor. They said when Mr H presented to the Trust he was experiencing an acute deterioration of his condition. Our adviser said this meant it was unlikely Mr H would have survived his admission.

24. Our adviser said NET tumours impair the body’s ability to absorb and use nutrition effectively, and Mr H’s tumour was very advanced. They said because of this, if the Trust had prescribed Mr H’s medications to be given through another route this would unfortunately not have made any real difference to his nutritional status.

25. We have found the Trust’s actions here were in line with GMC guidelines. As Mr H’s prognosis was poor and his tumour was preventing the absorption of nutrition, we do not think the Trust doing anything more to make sure Mr H was taking his medication would have changed things here.

26. We appreciate this issue has caused Mrs H to wonder if things may have turned out differently had the Trust done more to make sure Mr H was taking his medications. She told us of her distress when witnessing this and we recognise the ongoing impact this issue has had on her. We hope our explanation helps to reassure Mrs H that the Trust acted within the relevant guidelines and any additional actions would not have changed what happened.

Nutrition

27. Mrs H says as Mr H was struggling to meet his nutritional needs orally and through enteral feeding, the Trust should have provided him with PN feeding. She says this should have happened earlier in his admission.

28. The Trust said PN feeding in patients with carcinoid heart disease has to be considered carefully as the damaged heart valves are prone to becoming infected.

29. ESPEN guidelines say that that PN is unlikely to provide any benefit to patients who are dying and it will not result in any functional or comfort benefit for the patient.

30. As explained in paragraphs 23 and 24, it was unlikely Mr H was going to survive his admission. Our adviser said PN feeding would have provided Mr H with more calories but would not have helped to improve this NET or his liver. Our adviser also explained that liver metastases (which Mr H had) can cause vomiting, nausea, loss of appetite, early satiety and weight loss.

31. We appreciate just how worrying it must have been for Mrs H to witness Mr H’s decline in appetite and the problems he experienced with enteral feeding.

32. Our adviser said if the Trust had provided PN feeding, this would not have had an impact on Mr H’s survival because of how advanced his cancer was. They said this and the associated risks of infection from PN feeding meant it was not a suitable option for Mr H.

33. We have found the Trust’s decision to not consider Mr H for PN feeding sooner was in line with ESPEN guidelines. Mr H was sadly dying and so PN would have been unlikely to provide any benefit to him.

34. We recognise the significant worry the Trust’s handling of Mr H’s nutrition caused Mrs H. Mrs H told us of the distress she experienced witnessing Mr H’s very low oral intake and his difficulty tolerating enteral feeding. We appreciate how upsetting it must have been for Mrs H to observe Mr H’s decline. Mr H was not tolerating enteral feeding and his appetite was low, likely due to his disease progression.

35. The Trust’s initial plan was to optimise Mr H’s nutritional status for his surgery. Given this, we appreciate why Mrs H would be concerned the Trust should have considered PN sooner. We have found the Trust acted within guidelines when it did not consider Mr H for PN earlier in his admission. We hope our explanation provides Mrs H with some clarity and reassurance during this difficult time.

1. We were sorry to hear of the circumstances leading up to Mr H’s death. Mrs H told us she feels if the Trust had done more, Mr H would not have deteriorated and his planned heart surgery may have gone ahead. We recognise how deeply distressing these events have been for Mrs H and we appreciate she continues to have concerns about whether different care may have changed what happened. We offer Mrs H and her children our sincere condolences for their loss.

2. We have found no failings in the Trust’s management of Mr H’s medications or in its decision to not provide Mr H with parenteral nutrition (PN). PN is nutrition provided directly into the bloodstream through a vein.

3. It is understandable Mrs H is concerned the Trust should have done more to improve Mr H’s nutritional status given it documented its plan to do so. We recognise how worrying this has been for Mrs H. We have found that the Trust followed the relevant guidance.