The Hillingdon Hospitals NHS Foundation Trust

5. Mrs G complains about Hillingdon Hospital’s NHS Foundation Trust’s (the Trust) care and treatment of her mother Mrs R between two hospital admission periods, from 23 October 2022 to 1 November 2022, and 7 November 2022 to 27 November 2022. In particular, Mrs G complains:

• the Trust failed to reach a cancer diagnosis during the periods of care from 23 October to 27 November 2022 despite obvious signs of cancer from test results • there was an unreasonable delay in finding a hospital bed for her mother in a specialist hospital from 8 November to 27 November 2022 and she did not receive adequate medical assistance while she waited for a bed • there was no communication with the family about test results or the seriousness of her mother’s illness during the periods of care from 23 October to 27 November 2022 despite attempts made by the family to get some answers.

6. Mrs G states her mother’s treatment in hospital and her death has had a detrimental impact on the whole family. She says she was denied the opportunity of spending more quality time with her mother because the Trust failed to reach a cancer diagnosis from test results. Mrs G says her mother would have survived if the Trust had diagnosed her cancer.

7. Mrs G says her mother’s health deteriorated while she waited to be transferred to another hospital for treatment and during that period, her jaundice worsened. She also says the poor communication with the family caused significant distress and frustration.

8. Mrs G would like financial compensation and service improvements.

9. Mrs R had a history of cholecystitis (inflammation of the gallbladder). In October 2022 she was admitted to hospital with symptoms of cholecystitis. A scan of her abdomen confirmed features of acute cholecystitis and signs of an infection.

10. On 24 October 2022 Mrs R had an endoscopic retrograde cholangiopancreatography (ERCP). An ERCP is a specialised procedure to diagnose and treat conditions in the bile and pancreatic ducts. A stent was also inserted for a stricture (an inflammatory narrowing) of a duct. Mrs R developed acute pancreatitis following the ERCP. The Trust spoke to a hospital in a different Trust who specialised in the area of care Mrs R required. The Trust arranged for Mrs R to be seen as an outpatient to advise on managing the acute pancreatitis.

11. On 26 October 2022 a repeat scan of Mrs R’s abdomen was done which showed severe infection, but an underlying gallbladder tumour could not be excluded.

12. On 27 October 2022 Mrs R was said to be making good progress, and her blood tests were improving. She was discharged on 1 November 2022 and the Trust arranged for her medical plan to be followed up by the specialist hospital.

13. On 7 November 2022 Mrs R attended the emergency department and results of another scan showed the duct connecting the gall bladder to the small bowel was inflamed. Mrs R was admitted to a ward and was initially diagnosed with ongoing biliary obstruction and possible infection. Mrs R was treated with antibiotics, pain relief and intravenous fluids.

14. The Trust made arrangements on 8 November to transfer Mrs R to the specialist hospital for urgent specialist intervention but there was no capacity until 27 November 2022.

15. Sadly, Mrs R died on 9 December 2022 with the cause of death listed as multiple organ failure and cholangiocarcinoma (a cancer that forms in the bile ducts).

Cancer Diagnosis

19. Mrs G complains the Trust failed to diagnose her mother Mrs R’s cancer during her two admissions spanning from 23 October to 27 November 2022, despite obvious signs of cancer from test results. Mrs G says her mother’s illness was not taken seriously and as a result she was denied the opportunity of spending more quality time with her mother.

20. In response to Mrs G’s concerns about the lack of a cancer diagnosis, the Trust explained it had carried out necessary tests, the results of which were discussed with the specialist hospital who were best placed to carry out diagnostic checks.

21. The records show, following Mrs R’s initial admission in October 2023, where her presenting symptoms were inflammation of the gallbladder, she underwent several imaging tests and investigations. The Trust preformed a contrast-enhanced computed tomography (CT) scan of Mrs R’s abdomen. It also performed an ERCP and a magnetic resonance cholangiopancreatography (MRCP). An MRCP is a non-invasive, radiation free MRI procedure that produces highly detailed images of the liver, gallbladder, bile ducts and pancreas.

22. During Mrs R’s second admission in November 2023, Mrs R had another CT scan and we can see blood tests were also performed.

23. According to AUGIS Commissioning guide: Gallstone disease, standard investigative considerations for Mrs R’s presenting symptoms include ERCP and MRCP. Our adviser said these were the appropriate tests to carry out in the circumstances. Our adviser also said the Trust appropriately carried out a CT scan and blood tests during Mrs R’s admissions.

24. Mrs R’s initial CT scan in October 2023 demonstrated features of acute-on-chronic cholecystitis with suspected perforation of the liver tissue, resulting in a probable liver abscess. These findings were compared with a prior CT scan from November 2021, which had been performed for cholecystitis.

25. The ERCP demonstrated a stricture of the common hepatic duct. The MRCP identified a pericholecystic mass (a lump, swelling or collection of tissue located around the gall bladder) causing compression of the bile duct; clinicians were unclear whether this was caused by severe inflammation, infection, or a tumour.

26. The Guidelines for the diagnosis and treatment of cholangiocarcinoma says, imaging is the main diagnostic procedure for cholangiocarcinoma which could appear as an intrahepatic mass lesion with characteristics of a metastasis, a hilar stricture or distal bile duct obstruction (types of bile duct obstructions), with or without a discernible mass.

27. Given Mrs R’s ERCP report documented a biliary stricture as the procedure diagnosis, our adviser said the MRCP finding, considering the guidance, raises the possibility of a hilar cholangiocarcinoma, which is a form of bile duct cancer.

28. In addition, our adviser said the MRCP findings which included a malignant (cancerous) cause as part of a list of potential conditions causing Mrs R’s symptoms, meant that clinicians should have considered cancer as one of the potential causes.

29. Our adviser said, although the Trust initially suspected a benign cause for Mrs R’s admission, subsequent test results raised the possibility of an underlying malignancy.

30. Therefore, we consider, in line with the guidelines for the diagnosis and treatment of cholangiocarcinoma there was an indication from the test results obtained during Mrs R’s first hospital admission in October 2023 that she may have had bile duct cancer. There is no evidence in the records to indicate that Mrs R and her family were informed that a potential diagnosis of cancer was being considered. This is a failing which we have addressed below under ‘Communication with family’.

31. We have considered whether the Trust could have reached a diagnosis of bile duct cancer and if so, what impact this may have had on Mrs R if an earlier diagnosis had been obtained.

32. The guidelines for the diagnosis and treatment of cholangiocarcinoma strongly recommends a multidisciplinary team approach, emphasizing that complex cases should be managed in specialist centres.

33. We can see that following Mrs R’s ERCP, where a stricture of the common hepatic duct was identified, the treating clinician documented a recommendation to discuss the imaging findings with the specialist hospital, which was a designated tertiary referral centre. The notes indicate that a consultant from the Trust discussed Mrs R’s test results with a hepatobiliary surgeon from the specialist hospital on 25 October 2022. This is in line with the above guidance.

34. According to the guidelines for the diagnosis and treatment of cholangiocarcinoma, differentiating between benign and malignant biliary strictures is challenging. Our adviser says this means it is not easy to determine malignancy, and consideration should be given to benign causes during clinical investigations. Our adviser also said it is difficult to identify an underlying malignancy when significant inflammation or infection is present, as was the case with Mrs R. In addition, her previous surgical history in 2021 with gallstone-related complications added further complexity to the diagnostic assessment.

35. Therefore, due to the inflammation and complexity of the assessment we cannot say that the Trust should have reached a cancer diagnosis during her admissions.

36. During Mrs R’s second admission in November 2022, it was decided that Mrs R required specialist input and a transfer was arranged for her to undergo a repeat ERCP at the specialist hospital. Mrs R also required percutaneous transhepatic cholangiography (PTC) to achieve effective biliary drainage. A PTC is a specialised x-ray procedure used to diagnose and treat bile duct obstructions.

37. The GMC guidance says doctors should refer a patient to another suitably qualified practitioner when this serves their needs.

38. We can see that the PTC procedure was not available within the Trust and necessitated a referral to the specialist hospital for assessment and drainage. In line with the GMC guidance, the Trust made a referral to a more suitably qualified practitioner. As such, even if a cancer diagnosis had been reached before transfer, Mrs R’s clinical impact would have remained the same as she required treatment that the Trust could not provide.

39. We acknowledge Mrs G’s frustrations that Mrs R was diagnosed with cancer after she was discharged from the Trust’s care. Mrs G says the specialist hospital she was transferred to were able to diagnose Mrs R’s cancer quickly, using the same test results the Trust had at its disposal. While we are not able to confirm the process carried out by the specialist hospital in diagnosing Mrs R, as that is outside the scope of this investigation, the specialist hospital was more equipped to provide the care and treatment Mrs R needed.

40. We have not found a failing with the Trust not making a cancer diagnosis. It was appropriate, and in line with the GMC guidance, for Mrs R to be transferred to a specialist hospital who were the right hospital to make the diagnosis and provide the care and treatment she needed. Furthermore, even if the Trust had reached a cancer diagnosis during the second admission, we have not seen any evidence that this would have improved Mrs R’s clinical outcome.

Hospital bed delay

41. Mrs G complains there was unreasonable delay in finding a hospital bed for her mother in the specialist hospital. She also says she did not receive adequate medical assistance while she waited for a bed.

42. The notes indicate on 8 November 2022, the Trust made plans to transfer Mrs R to the specialist hospital following the initial diagnosis of ongoing biliary obstruction and possible infection. Unfortunately, there was a delay in transferring Mrs R to the specialist hospital due to the unavailability of hospital beds at the hospital. Even though the Trust had requested a hospital bed on 8 November Mrs R was transferred on 27 November 2022.

43. The GMC guidance says a doctor must 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.

44. In this case, the Trust identified that Mrs R required specialist input, specifically a PTC drainage and arranged for this to take place soon after she was readmitted to hospital. We have found above that this was in line with guidance.

45. Unfortunately, there was a delay of 19 days in securing a bed for Mrs R. Our adviser says this delay was inappropriate as Mrs R required urgent additional intervention at the specialist hospital especially as she remained jaundiced following the ERCP. The notes suggest the delay was outside of the Trust’s control and were due to the shortages at the specialist hospital. The issue relating to the unavailability of beds at the specialist hospital are outside of the remit of this investigation as we can only investigate the Trust’s actions.

46. The notes show that the Trust made almost daily attempts to arrange Mrs R’s transfer to the specialist hospital. In addition, the admitting consultant dictated a formal referral letter to the regional hepatopancraetobiliary (HPB) centre. A HPB centre specialises in the surgical management of disease affecting the liver, pancreas, gallbladder and bile ducts. Beyond its usual referral pathway, the Trust also contacted two other tertiary HPB centres for further assistance but both centres declined the referral because they were unfamiliar with Mrs R’s case.

47. We understand how distressing it would have been for Mrs R and her family to have waited an unreasonable amount of time for a bed to become available at the specialist hospital, when it was clear that she required a drainage procedure, following her rapidly declining health. Taking the Trust’s actions into account, we consider the Trust acted in line with the GMC guidance.

48. Mrs G says while her mother waited for a bed, her health deteriorated further with untreated jaundice. She says the pain killers and antibiotics the Trust provided during this period were insufficient.

49. A liver function test was carried out on 8 November and according to our adviser, the results indicated significant liver dysfunction. Our adviser said this highlighted the need for urgent referral to the specialist hospital for a PTC and it was the next required intervention for Mrs R’s health circumstances. There was nothing further the Trust could do at this stage except wait for the transfer.

50. We consider the Trust had correctly identified that Mrs R required specialist intervention and had already made arrangements for this. As such, we have not found a failing with the care and treatment provided to Mrs R while she waited for a hospital bed to become available at the specialist hospital.

Communication with family

51. Mrs G complains there was no communication with the family about test results or the seriousness of her mother’s illness despite attempts made by the family to get some answers.

52. The GMC guidance says doctors must communicate effectively with patients and give patients the information they want or need to know in a way they can understand. It also says doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.

53. As above, we have found that the Trust should have considered a possible cancer diagnosis during Mrs R’s initial admission. Having considered the notes, there is insufficient detail regarding communication with Mrs R’s family concerning a possible underlying cancer diagnosis.

54. We can see notes from ward rounds, along with entries outlining management plans and there is evidence that doctors of varying seniority spoke with the family between 9 and 15 November 2022. However, the updates provided to the family primarily focused on the investigations and the planned transfer to the specialist hospital. The records do not document discussions regarding a potential cancer diagnosis. Furthermore, there is no evidence Mrs R or her family were informed of the severity of her condition or the poor prognosis, particularly in the context of ERCP-induced pancreatitis.

55. Our adviser said following the results of the CT, ERCP, and MRCP obtained during the first admission, the Trust should have informed Mrs R and her family that an underlying malignancy was being considered as part of the differential diagnosis. This is information Mrs R and her family needed to know. This is not in line with the GMC guidance and we find this to be a failing.

56. Our adviser acknowledged that the radiological and endoscopic abnormalities (unexpected findings detected in the body during imaging tests) identified could have been attributable to a benign inflammatory process, secondary to gallstone disease, but said a further opportunity to discuss the possibility of an underlying malignancy arose during the subsequent re-admission in November 2022 where Mrs R’s condition had worsened.

57. Mrs R’s family would understandably have relied on the Trust to share sufficiently detailed information about Mrs R’s health, in a timely manner especially at an already upsetting time for the family. There were missed opportunities to provide important information to Mrs R and her family during both admission periods in October and November 2022, particularly when Mrs R was waiting for a hospital bed, in need of urgent care.

58. Having taken everything into consideration, we have found the Trust did not communicate effectively with Mrs R and her family about the severity of her health condition in line with GMC guidance. Had Mrs R’s family been informed about the severity of her illness, and the possible diagnosis and prognosis, they could have managed their own expectations and could have made more informed decisions about the time spent with Mrs R.

59. It would have been very distressing for Mrs R and her family to learn of the severity of her condition after she was transferred to the specialist hospital. We acknowledge the additional distress this would have caused the family as they would have had a shorter time to come to terms with the severity of Mrs R’s ill-health. Mrs R sadly died 12 days after she was transferred to the specialist hospital.

1. We were very sorry to hear of the death of Mrs G’s mother, Mrs R, on 9 December 2022. We recognise the distress this has caused Mrs G and her wider family, worsened by the complaints about the care and treatment Mrs R received. We offer our sincere condolences for their loss and the grief they have experienced.

2. We found the Trust did not communicate effectively with Mrs R’s family about what her test results revealed about her health and the seriousness of her illness.

3. We have not found any failings with the Trust’s diagnosis of Mrs R’s health condition, particularly relating to the fact it did not reach a cancer diagnosis. While we consider there was an unreasonable delay in finding a hospital bed for Mrs G, we found this was not due to the Trust’s failings as it had made reasonable attempts to arrange a bed for Mrs R at a specialist hospital.

4. As such, we partly uphold this complaint. We have recommended that the Trust produce an action plan to tell us what it will do to improve its services going forward, regarding communication with patients and their families, to prevent this happening again. We also recommend the Trust pay Mrs G £400 in recognition of its poor communication with Mrs R’s family about the test results and the seriousness of her illness and for the distress and upset this caused them.