11. Mr N told us he was shocked that M had died, as she had followed all the advice the Trust gave her. He was concerned the Trust may not have appreciated the seriousness of her condition and made the presumption that she was well when she wasn’t. He was worried something might have been missed.
12. We understand how close Mr N was to M, and how helpless families feel when their loved ones’ condition suddenly deteriorates.
13. We looked to see if the care and treatment the Trust gave was in line with guidance. We also asked our adviser to give us some information about this condition to help explain what happened.
14. Our adviser explained liver disease is an illness that usually progresses without symptoms. For this reason, the disease is often very advanced by the time it is diagnosed in many patients. It appears this was the case with M, who already had advanced liver disease, which her body was struggling to cope with, at the time of the diagnosis in February 2023.
15. Statistics from the British Liver Trust show that one in four people diagnosed with alcohol-related liver disease in hospital die within 60 days. Our adviser told us it is clear M was very unwell from her first presentation onwards during the period we are looking at.
16. We can understand why Mr N had concerns that the seriousness of M’s condition was not recognised, as there is no record in the medical notes of a discussion with M or the family about her likely prognosis.
17. We cannot conclude from this that the Trust had not recognised the severity of the disease. Throughout the period of treatment it treated M in line with the relevant guidance for this very serious condition, as we will outline below.
18. M was first diagnosed on 3 February 2023 at an outpatient Hepatology clinic. The Trust acted in line with the NICE guidance ‘Cirrhosis in over 16s: assessment and management’, by carrying out blood tests, ordering a gastroscopy (a thin, flexible tube with a camera is passed down the throat to look inside the stomach and upper digestive system), and arranging regular monitoring. This is what the guidance recommends.
19. The Trust saw M again on 22 February when she experienced dizziness. The Trust carried out an assessment and the doctor assessing M referred her to an acute internal medicine doctor because of her pre-existing liver disease. This was in line with the GMC guidance ‘Good Medical Practice’ which says ‘promptly provide or arrange suitable advice, investigations or treatment where necessary [and] refer a patient to another practitioner when this serves the patient’s needs’
20. The internal medicine doctor discussed the plan with a specialist and noted a planned follow up in the hepatology clinic on 28 February. The Trust discharged M on 23 February. There are no indications of failings in relation to the management of her liver condition, which was in line with both sets of guidance outlined in paragraphs 18 and 19.
21. M next attended hospital on 24 February when she was brought into hospital by ambulance after vomiting blood. It is clear M was aware of her condition, as the ambulance notes show she recounted a history of having been told she had alcohol related liver damage.
22. M was seriously unwell on this occasion with progressing liver disease, and the Trust carried out a thorough assessment. This initial assessment identified upper GI bleeding, possibly caused by varices. This is bleeding from enlarged veins (varices) in the oesophagus or stomach, often a complication of liver cirrhosis.
23. M was admitted to the gastroenterology ward. We can see how seriously the Trust took her condition as the gastroenterology consultant discussed the situation and carried out the endoscopy. The treating doctor also consulted with the hepatology consultant, who drew up the treatment plan.
24. The Trust treated M in line with the NICE guidance. This says ‘People are usually offered an upper gastrointestinal endoscopy to detect oesophageal varices [enlarged veins that can rupture and bleed]. If varices are found, they can be treated with either non-selective beta-blockers or endoscopic variceal band ligation’. This is what happened.
25. This guidance explains that the six week mortality associated with variceal bleeding is 10% to 20%. This means if 100 people experience bleeding from varices 10 to 20 will die within six weeks of the bleeding episode. This highlights how serious and potentially life-threatening variceal bleeding can be, especially in people with liver problems.
26. It is clear this was a progression of M’s condition and the Trust took all actions required by the guidance. There is no additional curative treatment outlined in the guidance.
27. M remained in hospital and the hepatology consultant saw her on 1 March. They drew up a plan for M to see the alcohol liaison nurse who carried out a full assessment and referred M to the community alcohol team for ongoing support. This was again in line with GMC guidance which says ‘promptly provide or arrange suitable advice, investigations or treatment where necessary [and] refer a patient to another practitioner when this serves the patient’s needs’.
28. The Trust discharged M on 2 March with arrangements for a clinic review in four to six weeks. Over the next few weeks M attended the Trust with various issues, 11 March with abdominal distension and swollen legs, a clinic review on 16 March where she had an ultrasound scan (USS), a gastroscopy on 17 March, where the Trust requested more banding in four weeks, and a referral by the GP on 21 April for reduced kidney function.
29. On these occasions the Trust acted in line with the GMC guidance which says doctors must: • ‘adequately assess the patient’s conditions, taking account of their history […], their views and values; where necessary, examine the patient • promptly provide or arrange suitable advice, investigations or treatment where necessary • refer a patient to another practitioner when this serves the patient’s needs’.
30. The doctors carried out assessments and arranged investigations and treatment. Our adviser told us there was nothing to show there was any other immediate action the Trust should take to manage the symptoms, which were related to the liver disease.
31. M was admitted on 5 May with worsening abdominal distension and bilateral leg oedema, jaundice and reduced urine output. The records show she was feeling dizzy and generally unwell. She was discharged on 11 May.
32. The records show during this admission the Trust recognised the potential for serious outcomes and assessed and treated M for acute kidney injury and ascites. The Trust noted her renal function was improving and carried out daily testing of her blood. We can see M was seen by the consultant hepatologist who approved the discharge and arranged a review in four to six weeks. These actions of the Trust were all in line with the guidance outlined in paragraph 29.
33. M was admitted to the Trust by ambulance on 22 May with abdominal pain and shortness of breath. We can see how seriously the Trust treated this admission by the fact it completed a Decompensated Cirrhosis Care Bundle. The British Society of Gastroenterology/British Association for the Study of the Liver guidance: ‘Decompensated cirrhosis: an update of the BSG/BASL admission care bundle’ says this should be considered as an assessment tool for patients with cirrhosis who have acute deterioration in liver function, and present with symptoms such as jaundice, worsening ascites, gastrointestinal bleeding and acute kidney injury, as were the case for M.
34. The records show the Trust recognised the worsening of symptoms and so completed the care bundle and carried out the treatment in line with the guidance, to look for any possible reversible factors and ensure it tried all effective early interventions.
35. The records show the Trust moved M to the acute medical unit (AMU) and she was reviewed on 23 May by a doctor, who carried out an examination, carried out blood tests and noted M’s observations. The doctor outlined a plan to give M care and treatment in line with the cirrhosis care bundle, to arrange a drain of the ascites and to arrange a review by hepatology.
36. M was reviewed by a doctor from hepatology the next day. This doctor also carried out an examination, carried out blood tests and noted M’s observations. The doctor outlined a plan to arrange a USS examination of M’s abdomen. On 25 May a medic reviewed M on the ward round and she was seen again by a doctor in the evening.
37. We can see the USS was carried out on the morning of 26 May. The original complaint to the Trust raised concerns about this, and suggested it had been completed and then not acted upon. There is no evidence of this from the records. Our adviser told us the time the Trust took to carry out the scan was reasonable, and that it is not unusual for scans to take this length of time to complete. The explanation given by the Trust that there was no porter available to take M at the original time planned for the scan (25 May) was reasonable. The scan was still completed in a timely way in line with the GMC guidance to ‘promptly provide or arrange suitable advice, investigations or treatment where necessary’.
38. Later that day M became uncomfortable because of the ascites. It was not possible to carry out a drain immediately because there was no one available from the imaging team to assist with this. Our adviser told us the purpose of this drain was immediate comfort and so it was correct the Trust prioritised safety and decided to wait for imaging to be available.
39. Sadly, M’s condition deteriorated. The Trust attempted to take a sample of the ascites to test for infection but was unable to. The Trust began treatment with antibiotics anyway, in line with the NICE guidance, as M was at high risk of developing spontaneous bacterial peritonitis (an infection of fluid in the abdomen).
40. M’s condition continued to deteriorate and the doctor discussed her condition with the renal registrar. The Trust developed a plan to manage her worsening renal function and continued deterioration.
41. We recognise it must have been upsetting for the family when M’s condition suddenly deteriorated and the Trust began urgent and intensive actions to try and reverse this deterioration. Sadly, sudden deterioration is common with this condition. The BSG/BASL guidance says when a patient’s clinical parameters worsen then escalation to high-dependency care may be needed. This is what happened and the Trust took all possible actions to try to support M who had developed multi-organ failure.
42. Despite all efforts M sadly died. Taking into account the views of our adviser we consider the Trust gave all care and treatment in line with guidance, and there was nothing additional it could or should have done. We cannot reach the conclusion that M’s death was avoidable.
43. Sadly, despite evidence M followed all the advice the Trust gave her, and the Trust following guidance in the care and treatment it gave her, the already severe disease continued to progress.
44. Our adviser said there were no operative options the Trust could have considered, as M was not well enough for this. We can see that even while M deteriorated the Trust continued with intensive treatment, in the hope she could recover from this acute episode and be well enough in the future for a transplant.
45. To conclude, there are no indications of failings in relation to the Trust recognising the seriousness M’s condition, and the care and treatment was in line with the guidance.
46. We understand how important this complaint is to Mr N and we thank him for sharing his concerns with us. We hope he will be reassured that we have not found anything to make us think we need to ask the Trust to take further action in relation to the issues we considered.