The Dudley Group NHS Foundation Trust

7. Mrs H complains her husband was discharged from the Trust on 12 August 2024 without a confirmed diagnosis for his cancer, without any pain relief for his worsening back pain, and without a plan for follow-up care for either his cancer or his back, despite the Trust being aware that he had terminal cancer and spinal fractures at the point of his discharge. She complains Mr H found out about his terminal cancer diagnosis and plan for palliative care in a letter he received on 24 August 2024.

8. Mrs H says from the point of his discharge home, her husband was left in constant, avoidable pain and unaware of his future, that they were both left feeling desperate and panicked without any help or support. Mrs H says receiving the letter left her husband shocked and scared, without any explanation or ability to ask questions, and he was still left unaware of his future and without help or support.

9. Mr H sadly died from his cancer on 3 September 2024. Mrs H says these failings not only caused a considerable impact to her husband’s mental and physical wellbeing but also caused a detrimental impact to her and her family, as they were also left not knowing the extent of his condition and were left watching him suffer in pain.

10. To resolve her complaint, Mrs H would like assurance that the Trust has made service improvements, to ensure these failings do not happen to anyone else in future. She also seeks a financial payment in recognition of the impact caused by these failings.

11. Mr H attended the Trust’s emergency department on 27 July 2024 on the advice of his GP. He reported several months of alternating bowel habits of constipation and diarrhoea, a loss of appetite and weight loss.

12. The consultant documented a working diagnosis (what is considered most likely from the information known at the time) of malignancy (cancer). A CT scan was taken and reported lesions in the liver, suggestive of metastatic disease (when cancer has spread).

13. The consultant noted explaining the working diagnosis and CT results to Mr and Mrs H, advising it was unclear if these lesions were at the primary site of the cancer but were likely metastases. The consultant explained more tests would be needed.

14. After specialist consultant interventional radiologist review of the CT results, they confirmed these lesions were metastatic disease alongside a metastatic mass in the pelvis, without any primary tumours. The radiologist recommended liver biopsy as a diagnostic investigation.

15. Further tests were performed, including a CT of the thorax region and whole spine MRI, which identified metastases and bony lesions around the spine that had caused fractures and spinal cord compression. The trauma and orthopaedic team were involved, who advised getting neurosurgical input.

16. Neurosurgery advised no neurosurgical intervention was needed and Mr H could mobilise without restrictions. The CT results, spinal fractures and their management were explained to Mr H, and he was told this was likely related to possible lung and/or liver metastases.

17. The liver biopsy went ahead, and Mr H was referred to the cancer of unknown primary and upper gastrointestinal (GI) cancer multidisciplinary team (MDT). He remained in hospital to have a colonoscopy, before being discharged home on 12 August.

18. The biopsy results were reported on 12 August, after the morning ward round when Mr H was discharged home. The MDT met on 15 August and discussed Mr H’s case and investigation results. The biopsy results reported large cell neuroendocrine cancer of unknown primary origin (a rare, fast-growing and aggressive type of cancer). The MDT determined Mr H was not for oncology treatment and the plan was to provide him best supportive care.

19. At home on 24 August, Mr H received a letter from an upper GI surgeon that said: ‘…as you are well aware, your liver biopsies also confirmed that you suffer from metastatic large cell neuroendocrine cancer which has been discussed at our upper GI MDT meeting on the 15/08/2024, where the recommendation was only offer best supportive care as it would not be amenable for any further treatment including chemotherapy’.

20. Mr H returned to the Trust’s emergency department on 28 August with severe back pain affecting his mobility, associated with double incontinence and a loss of independence. The acute oncology service met with Mr and Mrs H on 29 August to explain his highly aggressive cancer had spread extensively. It was explained he was too unwell to tolerate treatment, and his prognosis was days to weeks.

21. In line with Mr and Mrs H’s wishes, he was fast track discharged on 31 August, to receive palliative care at home. Mr H sadly died from his cancer on 3 September 2024.

Discharge 25. Mrs H’s first concern is with the Trust’s decision to discharge her husband on 12 August. We hope to assure her we find this was a clinically appropriate decision.

26. Our adviser explains it is reasonable for patients with cancer, whether suspected or diagnosed, to be discharged home from hospital if the next steps in their clinical care can be performed on an outpatient basis. This was the case for Mr H. The next steps in his clinical care were to await the return of biopsy results and then to await the next MDT meeting where those results could be discussed. The MDT would then determine what should happen next. This did not require Mr H remaining in hospital.

27. Records made on 12 August state that Mr H was medically optimised for discharge, and the evidence supports this. The Department of Health and Social Care’s ‘Hospital discharge and community support guidance’ sets out the criteria for patients to remain in hospital, and how clinicians should make good decisions for discharge from the acute setting.

28. The guidance says if the answer to each criterion is ‘no’, then active consideration for discharge must be made. The criteria questions are as follows:

• ‘requiring intensive care unit or high dependency unit care?

• requiring oxygen therapy or non-invasive ventilation?

• requiring intravenous fluids?

• National Early Warning Score [measuring vital signs] greater than 3?

• diminished level of consciousness where recovery is realistic?

• acute functional impairment in excess of home or community care provision?

• last hours of life?

• requiring intravenous medication greater than twice a day (including analgesia)?

• undergone lower limb surgery within 48 hours?

• undergone thorax-abdominal/pelvic surgery with 72 hours?

• within 24 hours of an invasive procedure? (with attendant risk of acute life- threatening deterioration).’

29. Mr H did not meet any of the above criteria that would have precluded him from discharge on 12 August. The discharge guidance acknowledges that clinical exceptions to the criteria will occur, stating that any such exception must be warranted and justified. Our adviser does not find any reason for a clinical exception in Mr H’s case.

30. In addition, the Care Act 2014 says that the patient and where appropriate, family members, should be involved in discharge decisions. Earlier discharge planning documentation notes discussion with Mrs H and ward round entries note discussion with Mr H regarding this plan. We do not find any evidence to suggest any service failure occurred, with the clinical decision to discharge.

Diagnosis 31. We know Mrs H is concerned by the decision to discharge as she says there was no confirmed diagnosis for her husband’s cancer by that point in time. Whilst it is accurate that there was no confirmed diagnosis at that time, we can assure Mrs H this was not indicative of service failure, as it remained appropriate for Mr H to have been discharged under this circumstance.

32. There was no confirmed diagnosis because the Trust did not yet have results to confirm the histological diagnosis (when disease is identified after analysing biopsied or surgically removed tissue under a microscope). The histological diagnosis could only be known on return of the biopsy results and following confirmation via MDT discussion.

33. Whilst the biopsy results were reported the same day Mr H was discharged, records show the report was completed after the morning ward round where Mr H was confirmed for discharge. The records clearly indicate that the treating team was not yet aware of the biopsy results at the time Mr H was discharged. Further, it is reasonable to await MDT discussion of these results, alongside other investigation findings, before the histological diagnosis could be confirmed. Our adviser says it is not unreasonable this had not taken place prior to Mr H returning home.

34. Whilst there was not yet a confirmed histological diagnosis, records make clear that from the start of Mr H’s admission the working diagnosis was of malignancy. The early CT scan taken on 27 July also reported findings suggestive of metastatic disease. An entry that same day notes Mr and Mrs H were told about this finding of concerning malignant lesions in the liver, with it explained it remained unclear if this was the primary source but were most likely metastases.

35. The diagnosis may not have been confirmed, but the working diagnosis was of malignancy. The investigations performed were exploring this and evidence shows it was explained to both Mr and Mrs H prior to his discharge home.

Prognosis 36. Mrs H is concerned about the discharge further, as she says the Trust was aware her husband had terminal cancer at the point he returned home. We do not find this to be accurate. Although the working diagnosis was of malignancy and investigations reported likely metastases, the type, prognosis and treatment options for Mr H’s cancer had not yet been confirmed because the treating team did not yet have a confirmed histological diagnosis.

37. Our adviser explains that even where metastatic cancer is indicated, not all widespread disease is terminal. Patients can experience widespread disease which can remain curable, for example in the case of lymphoma (cancer originating in a part of the body’s immune system). It was therefore not the case that the Trust knew of Mr H’s terminal status at that point in time.

Spinal fractures 38. Mrs H is concerned about the decision to discharge due to the Trust knowing her husband had spinal fractures at the point he returned home. We take this opportunity to clarify that Mr H’s spinal issues were due to metastases, where cancer had grown and pressed upon the spine and compressed the spinal cord.

39. As we explained earlier, Mr H was medically optimised for discharge. The trauma and orthopaedic team were involved and specialist neurosurgical input was obtained, advising Mr H could mobilise without restrictions. His ongoing care did not require continued inpatient admission, and this included for his spinal compression fractures as the next steps for this were the same next steps for his cancer, to await biopsy results and MDT discussion.

40. Appropriately at discharge, the Trust had already put in place plans for MDT discussion once the biopsy results had returned. Additionally, in line with guidance from the National Institute for Health and Care Excellence on spinal metastases and metastatic spinal cord compression, records show on discharge Mr H was appropriately safety netted (when patients are provided with guidance on when and how to seek further medical help if their condition changes). We are assured the evidence shows his spinal issues were appropriately considered and did not preclude his discharge.

Back pain 41. We also considered Mrs H’s complaint that the Trust discharged her husband without any pain relief for his worsening back pain. We do find Mr H was discharged with analgesia (pain relief), in the form of paracetamol. Records show the only analgesia Mr H required during his admission was paracetamol, and the same dosage was prescribed to him at discharge.

42. Pain assessments are documented throughout the admission. For longer than a week before his discharge home, Mr H only reported either 1 (mild pain) or 0 (no pain). The evidence tells us the analgesia provided was meeting his needs and from this, our adviser is assured Mr H was discharged with sufficient analgesia for any ongoing pain.

43. Additionally, as we explained above, Mr H was also safety netted and it would have been reasonable for him to have accessed primary care (GP services) for alternative analgesia should his pain needs have increased.

Follow-up care 44. Mrs H complains the Trust discharged her husband without a plan for follow-up care for either his cancer or his back. As we have referred to in earlier sections of our report, we do find some follow-up plans were in place.

45. Appropriately at discharge, the Trust had already put in place plans for MDT discussion once Mr H’s biopsy results returned. As we have explained and our adviser confirms, this was an appropriate next clinical step in determining what should happen next regarding his cancer. The Trust had also prescribed Mr H the same dosage of the same analgesia that met his pain needs in hospital, and gave safety netting advice should things change, appropriately addressing his spinal issues and back pain.

46. However, we do find aspects of follow-up care were lacking. Our adviser explains Mr H’s post-discharge care should also have involved input from the Trust’s acute oncology service, from both a communication and support perspective.

47. To explain the context, whilst there are some specialist cancer care facilities around the country, in general, patients who are admitted to hospital either for their cancer or with a cancer, are admitted into a general acute hospital. To ensure delivery of appropriate specialist cancer input for those patients, the UK oncology nursing society (UKONS), part of the UK acute oncology society (UKAOS) developed guidance, to provide a framework to ensure all hospitals in England have access to an acute oncology service.

48. Records show Mr H received input from the acute oncology service on 29 August, following his readmission. This shows the Trust had this resource and yet did not involve it during the earlier admission as it should have, in line with UKONS/UKAOS guidance.

49. Our adviser explains during the earlier admission, the acute oncology service should have been contacted, to have assessed Mr H and held discussions with him – and family members should this have been his wish – about the working diagnosis, his condition and what the next steps would entail.

50. The records do show the Trust had explained the working diagnosis of a questioned malignancy to Mr and Mrs H, explaining the CT findings of malignant lesions in the liver and that further investigations were needed to explore this. Yet, there does not appear to have been sufficient, frank conversation about those next steps or what to expect, prior to discharge. This should have happened, in line with UKONS/UKAOS guidance.

51. We think a more direct discussion before discharge about the plan for MDT involvement would have included discussion about what might be the likely outcome or at the least the different possibilities, to have better prepared Mr and Mrs H for those next steps after going home.

52. Our adviser says there should also have been communication about the plans for a named nurse to be a contact for follow-up calls in the period between awaiting the results and subsequent MDT meeting and then hearing the outcome. That way, Mr and Mrs H would have left hospital knowing the communication and support coming to them in the following days and weeks.

53. Our adviser explains would have given Mr H a named individual and professional involvement with communication throughout, to have removed any uncertainty. Whilst certainty about the diagnosis could only be gained following the MDT meeting, the nurse could have communicated the possibilities and prepared Mr and Mrs H for the potential breaking of bad news.

54. Once the MDT discussion had taken place, Mr H could then have expected telephone contact from that same named individual. Our adviser says they would have advised Mr H to attend an outpatient appointment at which the diagnosis and prognosis would have been explained in person.

55. Mrs H has described the impact caused by this lack of follow-up care, explaining her husband was left in constant, avoidable pain and unaware of his future. She says they were left feeling desperate and panicked without any help or support. She says this caused a considerable impact to Mr H’s mental and physical wellbeing but also caused a detrimental impact to her and her family, as they were also left not knowing the extent of his condition and were left watching him suffer in pain.

56. We recognise how difficult and distressing a time this must have been for both Mr and Mrs H, and the wider family. We must emphasise that whilst we do find communication and support aspects of follow-up care were lacking, we find appropriate follow-up plans were in place at the point of discharge for Mr H’s onward clinical needs.

57. We do not see evidence to suggest the lack of follow-up care left Mr H in constant, avoidable pain, as we can see the same analgesia that met his pain needs in hospital was provided on discharge, with safety netting advice on what to do should this change. We also cannot say the lack of follow-up directly meant Mr and Mrs H were left unaware of his future, not knowing the extent of Mr H’s condition. This is because, as we have explained, the extent of his condition and what this might mean for Mr H’s future was not yet known, until histological results were returned and discussed by the MDT.

58. However, we do consider the lack of communication and support follow-up that should have been in place did cause the emotional impacts Mrs H describes. She and her husband were left without the involvement that should have been given via communication channels, to bring them through those next steps over those few weeks, and to better understand and prepare for what they could or should expect.

Communicating the diagnosis 59. Mrs H complains that her husband found out about his terminal cancer diagnosis and plan for palliative care by letter. We agree that it was not appropriate for Mr H to have found out about the confirmed diagnosis and plan for palliative care, by letter. It is important we explain that the letter and its content was appropriate, and a letter such as the one sent would have been appropriate to have sent to Mr H, but only after the diagnosis had been shared face-to-face.

60. As explained above, following the MDT meeting, the Trust should have contacted Mr H to have arranged an outpatient appointment. He could then have attended, along with Mrs H should he have wished, to see a consultant and clinical nurse specialist who would have shared his diagnosis face-to-face.

61. This links in with our earlier consideration about the lack of communication and support follow-up on discharge. Had the acute oncology service been involved as it should, in line with UKONS/UKAOS guidance, the named individual keeping contact with Mr H up to this point in time would have then contacted him after the MDT, to arrange the appointment.

62. Communicating the diagnosis and discussing the prognosis via a face-to-face appointment would have been appropriate, in line with General Medical Council guidance on ‘Good Medical Practice’. This says clinicians must give patients the information they want or need to know in a way they can understand, making arrangements to meet patients’ communication needs, being considerate to those close to the patient and being sensitive and responsive in giving them information and support. We cannot see that this was met, and we identify what happened here as a service failure.

63. Mrs H says receiving the letter left her husband shocked and scared, without any explanation or ability to ask questions, and he was still left unaware of his future and without help or support. We are very sorry to have learned that this was how Mr and Mrs H received such difficult news. We acknowledge the shock and worry that would have resulted, and the distress caused by having no ability to discuss and question this information.

Action to remedy 64. The Parliamentary and Health Service Ombudsman’s ‘NHS Complaint Standards’ say organisations should openly identify instances when things have gone wrong, or where services have had an unfair impact, and take responsibility for these. They say organisations should explain why things went wrong, give meaningful and sincerely apologies and explanations that openly reflect the impact on the people concerned, and identify suitable ways to put things right.

65. For the two matters where we identify that service failure occurred, we carefully considered the Trust’s responses to Mrs H’s complaint. We found full and open acknowledgement of wrongdoing for those two issues, with sincere apologies being given, and explanations of what the learning that would take place would look like.

66. We know Mrs H has come to us seeking assurance of the service improvements the Trust said it had put in place. We asked the Trust for further information on what it has done since local resolution to provide her – and us – with that assurance.

67. The Trust reiterated its acknowledgement of what went wrong and offered further apologies to Mrs H. It said it has reinforced that the allocation and follow-through of MDT actions should always be managed via the patient’s responsible ‘parent consultant’, and it now has an MDT tracker assigned to each speciality MDT meeting, to identify any such gap should it occur in future. It said these issues have been discussed across all divisions in the Trust to reinforce the importance of timely and appropriate communication, to prevent a recurrence of the issues identified in Mr H’s case.

68. The Trust said these issues were shared with the Deputy Divisional Chief Nurse, the Lead Cancer Nurse and the Macmillan Living with and Beyond Cancer Clinical Nurse Specialist who met and discussed:

• Discharge passport for patients with cancer - so patients have information regarding the support that is available on discharge.

• A Trust-wide patient safety bulletin for support available to patients and carers • Drop-in information sessions for teams.

• A Cancer Care Trust Newsletter.

69. It said the Macmillan team have visited all wards and departments with information leaflets and to advise what resources and services are available for patients with cancer. It said there are free cancer communication courses available to staff that departments and teams know to signpost staff to utilise.

70. The Trust said the Lead Cancer Nurse had contacted other Lead Cancer Nurses around the West Midlands to identify additional training and processes used, led cancer care study sessions and attended junior doctor induction training to share learning on the ‘dos’ and don’ts’ when sharing a diagnosis.

71. It confirmed that ward teams were asked to share the learning from this complaint during their daily patient safety huddles, and Lead Nurses across divisions were asked to share the key learning points with all ward staff via email. The Trust said Mrs H’s complaint and responses were anonymised and circulated to staff for full awareness, as well as it being discussed at the Matron and Lead Nurse surgical meeting as part of a broader learning review.

72. In addition, the Trust said the complaint was presented at the Patient Experience Group meeting, where these gaps were further acknowledged and the actions for improvement and implementation were the outcomes outlined above. The Trust provided assurance that the Lead Cancer Nurse would monitor the progress regularly.

73. We consider the Trust has acted in line with the NHS Complaint Standards, in giving a fair and accountable response and promoting a learning culture.

74. In our view, the Trust’s response is proportionate to what went wrong and the actions it has taken are go far enough to remedy the impact. We are assured by the concerted efforts taken to put things right, and we hope Mrs H is further assured by the above.

75. We do not find there is anything left to remedy, and we consider this matter resolved by the response given and actions already taken.

1. We have carefully considered Mrs H’s complaint about various aspects of the Trust’s decision to discharge her husband on 12 August 2024 and him receiving news of his diagnosis of terminal cancer by letter, two weeks later.

2. We do not see any evidence of failings in the Trust’s decision to have discharged Mr H. We find he no longer required acute inpatient care, he was medically optimised for discharge, prescribed sufficient pain relief on discharge and plans for follow-up to meet his clinical care needs were appropriately in place.

3. We do think follow-up care was lacking from a communication and support perspective, and we identify this as a failing. We consider the subsequent failing we identify in Mr H finding out about his diagnosis by letter would not have happened, if the appropriate communication and support follow-up had been in place at the point of discharge.

4. We have carefully considered what has already been done. We can see the Trust has already identified both failings we identify. Considering our view of the impact caused, we are satisfied the acknowledgements and apologies the Trust has given to Mrs H, and the improvements it has already taken, go far enough to put things right. The Trust provided us with further information on the actions taken since Mrs H’s complaint, which we share in this report, and consider provides the assurance of improvements that she seeks.

5. As we do not find there is anything left to remedy, we have not upheld this complaint.

6. Mr H sadly died from his cancer on 3 September 2024. We recognise the distress and grief Mrs H continues to experience, following the loss of her beloved husband. We hope our report provides her assurance of the care we consider was appropriate, and in the steps the Trust has since taken to remedy the impact where we find evidence of service failure.