University Hospitals of Derby and Burton NHS Foundation Trust

5. Mr Z complains the Trust did not share information about his wife, Mrs Z’s, cancer on three occasions, removing the choice of alternative treatments. He complains the Trust did not:

• inform them about the increase in cancer markers from her blood test in July 2022, until 18 November 2022 • inform them about the development of new bone deposits that were identified in August 2022 • inform them about how long the effectiveness of her current chemotherapy treatment would be until December 2022, when she was too unwell to change treatment.

6. He says the Trust’s actions caused the premature death of his wife. Mr Z says he has been devastated by the loss of his wife and his two young daughters have been left without a mother.

7. As a result of his complaint, Mr Z wants the Trust to acknowledge failings in his wife’s care, a further apology and service improvements.

8. Mrs Z was diagnosed with breast cancer in 2011 and, after treatment, received the all-clear in 2015. In 2019, she was diagnosed with secondary breast cancer and started chemotherapy. During this treatment, she had monthly blood tests for monitoring.

9. In addition to the blood tests, Mrs Z had regular CT scans and was reviewed regularly in clinic.

10. Mrs Z sadly died on 31 December 2022 of cancer at the age of 42 years.

Communication of increased blood markers

15. Mrs Z had a blood test in July 2022 which showed increased tumour markers.

16. The GMC guidelines outline how a doctor should communicate with a patient and their family. They say doctors:

‘must give patients the information they want or need to know in a way they can understand. This includes information about:

• their condition(s), likely progression, and any uncertainties about diagnosis or prognosis • the options for treating or managing the condition(s), including the option to take no action • the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option.’

17. We understand from our oncology adviser that, when the blood test done in July showed an increase in tumour markers, staff should have discussed this with Mrs Z, in line with the above guidelines. There is no evidence this happened. The only documented remark staff made about her blood results is in the October 2022 clinic review letter, stating that ‘her blood results are satisfactory’. We can see her blood markers had continued to rise since July.

18. The Trust’s complaint response, dated 4 April 2023, said the increased blood markers were mentioned at the consultation on 18 November 2022. It said that ‘the treatment of metastatic breast cancer is primarily informed by how well treatment is being tolerated. This includes side effects experienced and how well the patient is feeling […]’. It goes on to say that ‘treatment is rarely changed based on tumour markers only’.

19. Mrs Z had a review of her treatment in the clinic on 6 May 2022 and her blood markers were normal and Mrs Z reported feeling well. A review in October was scheduled as a telephone review but it is noted that staff could not contact her. The records suggest that staff did not speak with Mrs Z as there is no record of any conversation about how she was feeling or her condition until she was seen in the November clinic.

20. After careful consideration of the evidence, our oncology advice and the Trust’s comments, we do not consider the Trust’s actions were in line with the GMC guidance in paragraph REF _Ref181626017 \r \h \* MERGEFORMAT 16 as staff did not tell Mrs Z about the increase in tumour markers until November 2022,four months after these were available. When they did tell her in November, they did not explain what this meant in terms of her disease progression or if alternative treatments were available. We consider this a failing.

Communication about the development of new bone deposits

21. Mrs Z had a review CT scan in August 2022. The CT scan identified bone deposits. Mr Z says that it was from around that time her condition started to steadily deteriorate.

22. The results of the CT scan in August do not appear to have been shared with Mrs Z as there is no evidence of the Trust contacting her to discuss them. The clinic summary letter from 14 October does not mention the CT scan or the new bony metastases.

23. Mrs Z had another CT scan on 5 December which the clinic letter of 9 December records showed disease progression. We understand from our clinical adviser that staff should have discussed the August CT scan results and the possibility of changing treatment with Mrs Z. Again, this did not happen.

24. As detailed above, the GMC guidance in paragraph 16 details that doctors must give patients information about, disease progression, the options for treating or managing the condition(s), including the option to take no action. There is no evidence of any discussion with Mrs Z following the August CT scan. This is not in line with GMC guidance, which we consider a failing.

Effectiveness of treatment

25. Mr Z believes that if he and his wife had been told about the recurrence of Mrs Z’s cancer sooner, her treatment could have been changed, increasing her chances of survival. He believes that, due to the delay in discussing the changing results, alternative treatment options were removed which could have given her more time with her family.

26. The Trust has not acknowledged any failings in Mrs Z’s care and maintains its position that, because she did not report that she felt unwell until December 2022, there was no reason to change her treatment. The Trust said that when the change in treatment was considered in December 2022, her current treatment was no longer effective, and she was too unwell to change her treatment.

27. Our adviser explained that when imaging shows disease progression when a patient is on existing chemotherapy, it is good practice and in line with the GMC guidelines to discuss this with the patient and make a shared decision about whether to continue treatment or change to an alternative treatment.

28. Had the Trust done this, it would have been in line with the GMC guidelines outlined above. As explained earlier, we saw no evidence this happened. This means Mrs Z was not given the choice of alternative treatment and, given that the tumour markers in her blood started to increase in July and new bony lesions were identified in the August CT scan, this should have happened before a change in treatment was considered in December 2022.

29. After careful review of the available evidence, we consider the Trust did not act in line with the GMC guidelines and tell Mrs Z about the progression of her disease when the information became available. There was a missed opportunity from August 2022 to have a conversation with Mrs Z giving her the choice of treatment change after CT scan in August showed disease progression. This did not happen, which is a failing.

Impact

30. It is our view that it was a failing the Trust did not tell Mrs Z about the progression of her disease on three occasions: in July, when her blood tumour markers were raised, in August, when the CT scans identified new bony metastases, and in her review in October 2022. This was despite the seriousness of her condition and not in line with the GMC guidance which says a doctor must ‘promptly provide (or arrange) suitable advice, investigation or treatment where necessary’.

31. Our oncology adviser said that starting an alternative chemotherapy treatment in either August or September could have slowed the cancer’s progression and given Mrs Z more time with her family. They said it is likely that a change in treatment would have given her more time. This is not certain and sadly, we cannot give any view on the balance of probabilities how long any change in treatment may have extended Mrs Z’s life, nor what decisions she would have made if the Trust had communicated her options to her as it should.

32. Mr Z says that his wife had previously responded well to changes in treatment. Unfortunately, we cannot predict how Mrs Z would have responded to another change in treatment, the side effects, and any complications of the treatments, which can increase the risk of death from sepsis.

33. The Trust’s failure to discuss the disease progression and consider alternative treatment earlier than December 2022 means Mr Z will now never know how effective a change in treatment may have been, had he and Mrs Z decided to accept any alternative options, and what additional time Mrs Z might have had with her family. We realise the degree of uncertainty about not knowing how much additional time Mrs Z may have had with her family will be a source of distress to Mr Z, and this is an injustice to him.

34. We understand Mrs Z’s death has caused a huge impact on Mr Z and on her family, and we thank him for bringing the complaint to us. We understand it cannot have been easy having to relive the events leading to his wife’s death.

1. We found there were failings in relation to the communication from staff about the progression of Mrs Z’s cancer and that she should have been given the option of a change of treatment at an earlier opportunity.

2. We conclude there was a missed opportunity to consider changing Mrs Z’s treatment in August or September 2022, which is likely to have resulted in her being with her family for longer. Sadly, it is not possible to quantify any additional time any change of treatment would have given her. We can see Mr Z has been deeply affected by his experience. He has been caused distress by the missed opportunities, and the uncertainty about this continues to affect him. We do not think the Trust has taken sufficient action to acknowledge the failings or prevent a recurrence.

3. We fully uphold the complaint and make recommendations for the Trust to explore what led to the failings, and to develop an action plan to prevent a recurrence.

4. We are sorry to hear about the circumstances that led to Mr Z bringing his complaint to us. We understand his wife’s death caused him and his family great distress. We hope this report provides some assurance that changes will be made.

35. In considering our recommendations, we have referred to the ‘NHS complaint standards’. The Complaint Standards support organisations to provide a quicker, simpler and more streamlined complaint handling service. They have a strong focus on: • early resolution by empowered and well-trained people • all staff, particularly senior staff, regularly reviewing what learning can be taken from complaints • how all staff, particularly senior staff, should use this learning to improve services.

36. In line with this, we make the following recommendation:

Within one month of this report • The Trust should write to Mr Z apologising for the failings detailed in paragraphs REF _Ref181957226 \r \h 20, REF _Ref181957244 \r \h 24, and REF _Ref181627035 \r \h 29. The Trust should share a copy of this letter with us.

37. Our complaints standards say that public organisations should look for continuous improvement and should use the lessons learnt from complaints to make sure they do not repeat poor service. In line with this, we make the following recommendations:

Within three months of this report • The Trust should involve its patient safety specialist in carrying out further analysis of what went wrong and led to the failings detailed in paragraphs REF _Ref181957226 \r \h 20, REF _Ref181957244 \r \h 24, and REF _Ref181627035 \r \h 29.

• The Trust should draw up an action plan, with the support of its patient safety specialist. The action plan should set out: • what the Trust will do, or has done, to prevent the failings from occurring again • the name of the person or team responsible for each action • when the actions will begin and when they will be complete • how the impact of the actions will be measured and monitored.

• The Trust will share a copy of the action plan with Mr Z, the Care Quality Commission, NHS England and our Office.

Within six months of the final report • The Trust should bring the complaint, our report and the action plan to the attention of its Board. The Trust should notify us when it has done this.

38. We understand that Mr Z was deeply affected by what happened and are grateful he brought his concerns to our attention. We hope that our recommendations for the Trust will provide assurance that this will lead to service improvements for future patients.