Diagnosis 17. Mrs N complains the Trust did not diagnose her with ovarian cancer in November 2022. Understandably this left her devastated when a private organisation diagnosed her with ovarian cancer less than a month later. It is clear from what she has told us that she has lost trust in the NHS and feels burdened by a failure that could impact others.
18. NICE guidance says for someone referred to secondary care, it should measure serum Ca125 in secondary care in all women with suspected ovarian cancer, if this has not already been done in primary care. Ca125 is a blood test used to measure levels of protein in the blood which can indicate ovarian cancer if it is higher than 35. It also says perform an ultrasound scan of the abdomen and pelvis as the first imaging test in secondary care for women with suspected ovarian cancer, if this has not already been done in primary care.
19. It goes on to say calculate a risk of malignancy index I (RMI I) score and refer all women with an RMI I score of 250 or greater to a specialist multidisciplinary team. RMI I is a clinical tool used to assess a lesion for a risk of malignancy. It uses a scoring system from the result of the Ca125 test and ultrasound to assess the risk.
20. Mrs N’s GP urgently referred her for an ultrasound scan on 27 September following a previous ultrasound scan carried out in July which showed a complex cyst on her ovary. Another Trust carried out the ultrasound scan on Mrs N in October. It confirmed she had complex cysts on both ovaries and recommended a rapid gynaecology referral for further investigation.
21. Mrs N’s GP referred her on the two-week suspected gynaecological cancer pathway on 6 October. The Trust arranged an appointment for her on 19 October. However, it was rescheduled to 11 November.
22. Mrs N attended the Trust, and it carried out a transvaginal ultrasound scan, which is a scan used to show images inside the pelvis. It wrote to her GP to explain she had adenomyosis and endometriosis, and said she had a cyst on her left ovary with no suspicious features. It noted it had a long discussion with Mrs N about treatment and management of both conditions.
23. It also said she had told it she had paid privately for consultations, blood tests and an MRI scan. It noted her Ca125 result was 37. The Trust also confirmed it had discharged her from the two-week suspected gynaecological cancer pathway and would follow up with her about management of endometriosis.
24. Mrs N explained that during her appointment at the Trust on 11 November, she informed it that she had recently been told by the private organisation that the cyst on her left ovary was likely cancer and recommended thorough surgery to remove her womb and ovaries. She told us the Trust said she did not have cancer and did not need surgery. She said she told it she would initially have private surgery to remove the left ovary to confirm whether it was cancer.
25. Our clinical adviser explains Mrs N’s Ca125 was the upper end of the normal range which is common in women with endometriosis. They went on to say although the Trust did not specifically calculate the RMI I of Mrs N’s cyst, it would appear the results of the ultrasound scan and the Ca125 test would unlikely exceed 250. Which based on these findings, indicates Mrs N did not need further referral to an MDT.
26. Therefore, based on the information provided by the Trust, it followed NICE guidelines as it considered the results of her Ca125 test she told it about and carried out an ultrasound scan to assess the cysts on her ovaries.
27. However, Mrs N says she told the Trust at this appointment, that she had been told by the private organisation she went to, that the cyst was likely cancer and it had recommended surgery to remove this.
28. GMC guidance says clinicians must promptly provide or arrange suitable advice, investigations or treatment where necessary. Our clinical adviser explained if Mrs N did inform the Trust of the private organisation’s findings it should have written urgently to the private organisation and her GP to request the records and the results of any investigations. They say Mrs N may have wanted to have further investigations and treatment for possible ovarian cancer on the NHS, to which she would be entitled to free of charge instead of having to pay for it.
29. The Trust’s records from Mrs N’s appointment on 11 November are limited. The Trust sent a letter to the Practice following her appointment confirming a diagnosis of adenomyosis and endometriosis, but there are no written records from the appointment or images from the ultrasound scan it carried out.
30. GMC guidance says clinical records should include relevant clinical findings, the decisions made, and actions agreed, and who is making the decisions and agreeing the actions along with the information given to patients. The Trust does not appear to have followed these guidelines because there does not appear to be any record of the information considered during the appointment other than a brief letter to the GP.
31. The Trust also did not save any images from the ultrasound scan it carried out on Mrs N. Whilst there is no guidance to say images should be saved, BMUS guidance says experience and knowledge should be used when selecting and recording any images, in addition to those required to support the examination report or show that a measurement has been made. Based on this, we have no images and little information to confirm what the Trust did other than what it provided in its letter to the Practice.
32. The Trust’s limited information about the November appointment did not include information about her telling it about the private organisation’s suspicion she had ovarian cancer. Mrs N provided a very detailed account of her appointment at the Trust, some of which is included in the Trust’s letter to her GP, ‘she had told it she had paid privately for consultations, blood tests and an MRI scan’. Therefore, on balance of probabilities it is likely Mrs N’s detailed description of what she told the Trust is accurate.
33. Therefore, Mrs N told the Trust about the investigation she had undergone privately and its suspicion she had ovarian cancer. Based on the GMC guidance above and our clinical advice, the Trust should have acted on this and requested the relevant information to confirm a diagnosis and offer her treatment with the NHS.
34. Our adviser explained that Mrs N’s ovarian cancer was in the very early stages which may have been difficult for standard NHS investigations to find. However, it had been identified in specialised tests through the private sector. She continued with her private care.
35. However, our adviser explained had she chosen not to do this, her private consultant would have been duty bound to refer her back onto an NHS pathway and send all the investigation results to the NHS. They explained she would have then continued her care on the NHS and received similar treatment to what the private organisation provided. Therefore, we are satisfied that she could have received treatment on the NHS rather than paying privately for it.
36. We understand from what she told us that Mrs N’s experience has been very difficult for her. It is clear that this has had a lasting impact on her and caused her ongoing distress and anxiety. We recognise her concerns that had she not had the opportunity to seek private care, her situation could have been worse. We are happy to hear the private treatment removed her cancer.
37. Whilst we understand the failings identified do not appear to have had any clinical impact on Mrs N as she had surgery to remove her cancer. Had the Trust considered what Mrs N told it about the private organisation’s findings, she may not have had to seek private treatment and would have been able to make this decision based on full information.
38. We cannot say Mrs N would have chosen to wait for NHS treatment had she been fully informed, or how long this might have taken. However, we can see how this would have led to Mrs N experiencing anxiety as the Trust discharged her from the twoweek pathway, and she was diagnosed with ovarian cancer a few weeks later. We can also see how not being able to make an informed decision about taking private treatment or NHS treatment would cause significant distress.
39. Our Principles of Remedy say when things have gone wrong, we expect organisations to ‘put things right’. This includes considering offering ‘all forms of remedy’ such as an ‘apology, explanation and remedial action’ to put things right. In its final response the Trust apologised that Mrs N’s experience led to her complaining but it does not appear to acknowledge her version of events or the impact of the failings on Mrs N. It concluded it had carried out all relevant investigations and had not done anything wrong in the two weeks she was under its care.
40. Based on this, we do not think the Trust has made a sufficient attempt to acknowledge the failings or the distress it caused Mrs N or achieve everything she wanted. Mrs N wants an apology and an acknowledgement of failings, along with service improvements and a financial remedy for the impact caused.
41. We are sorry to hear how Mrs N’s experience caused her great distress and anxiety. We hope this report clearly explains our findings and reassures her that her concerns have been taken seriously and will be addressed.
Complaint handling 42. Mrs N says the Trust’s investigation was based on erroneous information and it refused to reopen her complaint when she made it aware of this. Mrs N is concerned the Trust did not carry out a thorough investigation and its response was based on a false narrative which added to the fear she had experienced when she received her diagnosis.
43. Our Complaint Standards are a single set of values for organisations to use when handling complaints. It says in an organisation’s response it should take ownership when something has gone wrong, provide explanations and actions resulting and demonstrate they have understood a complaint raised. It also says it should make sure service users have their say and feel as though investigations are based on facts and fair.
44. The Trust provided Mrs N with a written response on 3 July 2023 and used Mrs N’s medical records to come to its conclusions. However, Mrs N responded to the Trust on the same day as she did not feel the response was based on accurate information and had not acknowledged her account of events. The Trust responded on 5 July to confirm it would not reopen her complaint and did not have anything further to add.
45. Based on this information it did not follow our complaint standards, as it did not listen to and address Mrs N’s concerns when she responded to its final response. It also did not make her feel as though its investigation was fair and based on facts. This is also added to, by the failing we have found above in relation to the lack of information in Mrs N’s medical records and possible missed opportunity for her to have NHS treatment.
46. Therefore, it would have been reasonable for the Trust to discuss Mrs N’s account of events to ensure it based its investigation on all information available. However, it did not allow Mrs N this opportunity and refused to reopen her complaint.
47. Mrs N says the Trust’s complaint handling added to her distress, anxiety, and further added to her losing trust in the NHS. We can see how the failing identified could have added to Mrs N’s anxiety at what was already a very difficult time for her.
48. In its final response the Trust apologised that Mrs N’s experience led to her complaining but it does not appear to acknowledge her version of events or the impact of this on her. It also was not willing to look at the further concerns she raised after it issued its final response, which is not in line with our principles of remedy included in the above section.
49. Based on this, we do not think the Trust has made a sufficient attempt to acknowledge the failing or the distress it caused Mrs N or achieve everything she wanted. From what Mrs N has told us, we recognise this has been a very distressing experience for her and we hope this report clearly explains our thinking.