18. We looked at the actions the Trust took prior to discharging Mr B to see if the decision to discharge him was in line with guidance.
19. The relevant guidance for suspicious bone lesions is the British Orthopaedic Oncology Society & British Orthopaedic Association (BOOS) guidance: Metastatic Bone Disease: A Guide to Good Practice. This says:
‘Any patient with a suspicious solitary bone lesion should be investigated with a full clinical history and examination, followed by investigation with routine blood tests (FBC, U&E, LFT, Bone Profile, ESR / PV, CRP and tumour markers) and radiological investigations including CT chest, abdomen and pelvis, MRI scan of the lesion and isotope bone scanning.’
20. The records show this happened and the Trust carried out these investigations during his inpatient stay. Our orthopaedic adviser told us the outcome was that the Trust had the suspicion the cancer was secondary to cancer of unknown primary (CUP).
21. CUP is a diagnosis given when cancer is found in the body but the place where it started (the primary site) cannot be identified. It is a type of metastatic cancer, meaning it has already spread from its original location to other parts of the body, but the origin remains unknown.
22. The BOOS guidance also says ‘Biopsy of a suspicious lesion of bone should always be performed if there is doubt about the underlying pathology’. Our orthopaedic adviser told us it was right and in line with guidance that the Trust made a referral when it did to the Specialist Trust for the biopsy, based on the information it had at that time. This is because that trust specialised in this type of biopsy.
23. After this the actions of the Trust departed from what the guidance expects. BOOS guidance says ‘Opinions for treatment should be discussed with the patient’s oncologist and seen in the context of the underlying malignancy.’
24. GMC Good Medical Practice also applies, which says doctors should: ‘refer a patient to another practitioner when this serves the patient’s needs’.
25. The Trust did not discuss the matter with Mr B’s oncologist, or make any referral to the Trust’s own oncology team. This was a failure to follow both the BOOS and the GMC guidance.
26. The records show Mr B was physically well enough to be discharged. The guidance in place at the time was Hospital discharge and community support: staff action cards. This says ‘people should be discharged when clinically ready in a safe and timely manner’.
27. However this guidance also says multidisciplinary discharge teams from all relevant services should work together alongside the person being discharged and their carer or family, where relevant, to plan the person’s discharge. Mrs B told us they were not told about the discharge until the morning of the day Mr B was dischared.
28. This is also reflected in the GMC guidance which says ‘You must contribute to the safe transfer of patients between healthcare providers and between health and social care providers. This means you must share all relevant information with colleagues involved in your patients’ care within and outside the team’
29. This was a missed opportunity to fully discuss the plan with Mr B and Mrs B and to involve the oncology team. This did not happen and so this was a failing. We understand how worrying it must have been for Mr and Mrs B to not have all the information and support to meet Mr B’s needs. Mrs B told us she has been left sad and angry there was no discussion with them as a family, and that her husband was not given a choice about treatments.
30. Our oncology adviser explained the clinical situation had changed once the scan on 7 April (reported just prior to discharge) identified this was likely a CUP due to the finding of liver metastases. The change in likely diagnosis means the Trust’s approach should have changed.
31. The Trust should have followed the actions required by the NICE guidance: Metastatic malignant disease of unknown primary origin in adults: diagnosis and management (CG104). This says:
‘Refer outpatients with MUO [Malignancy of Unknown Origin] to the CUP team immediately using the rapid referral pathway for cancer, so that all patients are assessed within two weeks of referral. A member of the CUP team should assess inpatients with MUO by the end of the next working day after referral. The CUP team should take responsibility for ensuring that a management plan exists which includes:
• appropriate investigations • symptom control • access to psychological support and • providing information.’
32. We find it was a failing that this did not happen. As outlined in the guidance, Mr B was an inpatient and should have been referred immediately and assessed by the cancer team by the end of the next day.
33. Our oncology adviser said if this had happened it is unlikely Mr B would have needed to be transferred to the Specialist Trust. The Trust could have arranged the biopsy without delay and there would have been a clear management plan. It is likely Mr B would have remained at the Trust as an inpatient while this management plan was drawn up.
34. It is positive that the Trust has acknowledged it should have referred Mr B to its own oncology team prior to discharge and has apologised. We will go on to consider whether the Trust has fully recognised the impact of the failing and undertaken sufficient action to remedy this in paragraphs 41 to 46.
35. We know how upsetting it is for Mrs B to be left with concerns that the outcome could have been different for Mr B. We carefully considered this and concluded that we could not say there was a missed opportunity to give Mr B earlier treatment that could have given him more time or a better outcome.
36. The period between the Trust carrying out the scan that identified the CUP and Mr B sadly dying was two months. Our oncology adviser told us this is because it appeared to be an aggressive cancer, which caused Mr B to rapidly deteriorate.
37. Our oncology adviser told us it is unlikely an earlier diagnosis would have given the opportunity to extend Mr B’s life. On the balance of probabilities it is likely Mr B would not have been a suitable candidate for chemotherapy, because of his rapid deterioration and the widespread disease.
38. The records from the Specialist Trust show how widespread the cancer was. They identified bone destruction in the spine caused by cancer, multiple hypodense lesions within the liver concerning for metastases, and swelling of the lymph nodes in areas in the lower abdomen.
39. Information from Public Health Wales and Cancer Research UK shows the overall survival rate is 25% of CUP patients living for 1 year. This includes the patients with the best prognosis and whose cancer is suitable for treatment, which was not the case for Mr B.
40. Our oncology adviser explained survival rates are very poor for patients with this type of cancer, even where treatment is possible. It is clear Mr B had a rapid deterioration, which shows he would not have been a likely candidate for, or benefitted from, chemotherapy.
41. We understand the impact the failings had on Mrs B. The Trust did not undertake the actions it should have, as required by the guidance. This led to the family losing confidence in the Trust and not having the information they needed to understand the prognosis and make plans.
42. Whilst the cancer would never be curable, and it is unlikely there would have been any suitable treatment to extend his life, our adviser explained it is possible an earlier diagnosis may have meant Mr B could have received palliative radiotherapy to better manage his pain. This would have led to a better quality end of life and his family may have had the information they needed to fully understand the prognosis.
43. The Trust has acknowledged it should have referred Mr B to its own oncology team prior to discharge and has properly apologised. It does not appear the Trust has recognised the steps it should have taken to be in line with the guidance, or the full impact of the failings on Mr and Mrs B.
44. The BOOS guidelines mention each trust should have a metastatic tumour lead and a referral pathway and agreed policy for all patients: ‘Every orthopaedic service should nominate a lead clinician to lead on the management of patients with Metastatic Bone Disease (MBD).’
45. The more recent BOAST guidelines Management of Metastatic Bone Disease say ‘Each unit should have an agreed policy for the multidisciplinary discussion and management of MBD including clear pathways for onward referral’.
46. We have not seen any evidence that the Trust has carried out any work to identify if there are systemic issues. The Trust outlined in its complaint responses some actions it would complete to prevent a recurrence. It has not been able to provide any evidence of the changes, other than an assertion that actions have been taken.