13. NICE’s NG50 ‘Cirrhosis in over 16s: assessment and management’ (the NICE guidance) says a person over the age of 16 with cirrhosis should be regularly monitored via ultrasound and blood tests every six months. As part of this monitoring, this guidance also says the United Kingdom for End-Stage Liver Disease (UKELD) medical scoring system should be used to produce a UKELD score. This score is used to predict the prognosis of patients with chronic liver disease, and it is used to help determine the need for liver transplantation.
14. The BSG’s ‘Adult liver transplantation: A UK clinical guideline’ (the BSG guidance) says patients should be considered for assessment for liver transplantation if their UKELD score reaches 49.
15. In January 2020, Mr Y’s UKELD score was calculated as being 49.2. As such, the Trust sought the opinion of the liver transplantation team at a local trust about whether Mr Y should be formally considered for a liver transplant. In February 2020, the liver transplantation team said a transplant was not required at that time, because Mr Y’s condition was stable. They said they would accept requests for another assessment in future if there was a progressive deterioration in Mr Y’s condition and UKELD score.
16. The Trust continued to monitor Mr Y in subsequent years and, in November 2022, the Trust saw irregularities in the imaging scans when compared with the scans from May 2022. The Trust later identified Mr Y had developed cancer in his liver, which was found to be untreatable. The Trust made a referral to the liver transplantation team at this time and, in January 2023, MRI scans indicated he likely had a rare tumour known as an angiosarcoma. This was untreatable.
17. We have seen no evidence in the clinical records between January 2020 and November 2022 which should have given the Trust a cause for concern or indicated a referral for transplantation was necessary sooner than November 2022. This is because no irregularities were found in the imaging scans or blood test results, and there was no significant increase in UKELD score.
18. That said, we can see the Trust did not calculate a UKELD score in May 2022, which was the last time the Trust reviewed Mr Y as part of his ongoing monitoring, before the irregularities were identified in November 2022. Our gastroenterology adviser calculated Mr Y’s UKELD score to be 52 in May 2022, using the information available in his clinical records.
19. As outlined above, the NICE guidance says a UKELD score should be calculated as part of the ongoing monitoring of patients with cirrhosis, and the BSG guidance says patients should be considered for liver transplantation if their UKELD score is over 49.
20. With this in mind, we consider this to be a failing.
Impact
21. Mrs Y is concerned the Trust may have failed to refer Mr Y for liver transplantation early enough which meant he developed an untreatable cancer which was found in November 2022 and led to his death in February 2023.
22. As outlined above, we have found the Trust failed to calculate a UKELD score in May 2022, and our gastroenterology adviser has calculated that Mr Y’s UKELD score was 52 at this time.
23. As such, we have considered whether this failing had an impact.
24. We can see the letter from the local trust who considered Mr Y’s case in January 2020 told the Trust to continue monitoring him and their liver transplantation team would be happy to review him again if there was a ‘progressive deterioration’ in the future.
25. The consultant at this local trust has told us this decision was made because Mr Y was stable at the time and did not have significant complications of cirrhosis at that time. That is, he did not have ascites (a collection of fluid in the spaces within a person’s abdomen) or encephalopathy (brain dysfunction ranging from mild memory loss or subtle personality changes to dementia, seizures, coma or death).
26. Our gastroenterology adviser told us the rise in UKELD score from 49.2 (January 2020) to 52 (May 2022) does not represent a progressive deterioration. They told us this is only a slight increase and therefore a small deterioration. They also told us the clinical records indicate Mr Y had developed an aggressive tumour between the scans in May 2022 and November 2022 and this was unfortunately a reflection of the rare nature of the tumour he had.
27. The consultant based at the local trust told us if Mr Y had been referred in May 2022, they would have considered reviewing Mr Y’s case. However, they also told us the rate of increase in Mr Y’s UKELD score was ‘very slow’ and they could not be certain he would have been accepted for transplantation. They also told us patients with cirrhosis do suddenly produce a significant cancer in the liver that is unfortunately untreatable and will completely change the course of their illness, which is what happened in Mr Y’s case. Our gastroenterology adviser confirmed this to be the case.
28. With this in mind, we consider we cannot link an impact arising from the Trust’s failure to calculate Mr Y’s UKELD score in May 2022. We cannot say it was a missed opportunity for a better clinical outcome for Mr Y because the local trust may not have accepted him for transplantation given the mild rise in his UKELD score. Sadly, the nature of Mr Y’s condition meant he could suddenly develop an untreatable cancer, which is what happened in this case.
29. We recognise how distressing the circumstances of this case have been, and continue to be, for Mrs Y. We hope our investigation and report helps to reassure Mrs Y on these matters.