North Middlesex University Hospital NHS Trust

4. Miss H complains about aspects of the care North Middlesex University Hospital NHS Trust (the Trust) provided to her mother, Mrs G. Specifically, she says:

• The Trust misdiagnosed Mrs G’s upper GI (gastrointestinal) stent blockage as COPD (chronic obstructive pulmonary disease) from December 2018 to March 2019

• The Trust missed a report from another hospital dated January 2018 which identified Mrs G had metastatic breast cancer which had spread to her oesophagus.

5. Miss H says, as a result of the missed report and the misdiagnosis, there was a lost opportunity to give her mother earlier treatment and a possible missed opportunity to prolong her life. Miss H says she may have had more time with her mother had the Trust acted on the report in January 2018.

6. Miss H says she still thinks about her mother every day and is experiencing profound grief from the loss of her only family member and the worry that other people may be affected. Miss H has told us the Trust’s actions have had a lasting impact on her wellbeing and her career, which has been strained because of this. She has told us she has lost faith in the NHS.

7. To resolve her complaint, Miss H would like service improvements at the Trust, for lessons to be learned and action taken to ensure these events do not happen to anyone else in the future. She would also like an apology from the Trust and a financial remedy.

8. In December 2017, Mrs G reported difficulties with breathing, swallowing and indigestion. The Trust found narrowing in her oesophagus. Results of biopsies done at this time showed that there was chronic inflammation in her oesophagus but no signs of cancer or pre-cancerous changes.

9. In January 2018, Mrs G had a CT scan at the Trust. A CT scan is a type of medical image taken to help clinicians see inside the body. Mrs G’s CT scan results showed that her breast cancer, of which all parties were aware, had metastasised, which means it had spread from her breast to her liver and lungs.

10. In January 2018 the Trust referred Mrs G to another hospital within a different trust (Trust B) for an endoscopy. This is a type of procedure where a clinician uses a thin, flexible tube with a camera to look inside a person’s body.

11. Trust B did an endoscopy and took biopsies. A biopsy is a type of procedure where a clinician takes samples of tissue from a specific area to help determine a patient’s diagnosis.

12. Miss H understands that in January 2018 Trust B sent a report to the Trust disclosing its findings from Mrs G’s procedures, including her biopsy result. The biopsy result showed Mrs G’s cancer had spread to her oesophagus.

13. In February 2018, the Trust inserted a stent into Mrs G’s oesophagus to help open the narrowing in her food pipe to ease her difficulties with swallowing and breathing.

14. In November 2018, the Trust’s oncology team noted that Mrs G’s oesophageal symptoms persisted despite the stent and referred her to the gastroenterology team for advice.

15. Mrs G’s records show in November 2018 the Trust considered whether she had a cancerous growth in her oesophagus. It concluded this was unlikely due to multiple negative biopsies taken from Mrs G in December 2017.

16. In mid-December 2018 the Trust inserted a second stent into Mrs G’s oesophagus to help with her breathing and swallowing difficulties. Mrs G was discharged the same day.

17. Later in December 2018, Mrs G attended the Trust’s Emergency Department (ED) on two separate occasions with symptoms of sudden breathlessness and coughing. The Trust did a CT scan and, on reviewing this, suspected she had a blood clot in her lung. Mrs G was given medication by the Trust, which included an inhaler to help manage her symptoms.

18. We can see from Mrs G’s records after reviewing her CT scan, the Trust also noted Mrs G had the severe lung condition emphysema, causing her breathing difficulties. It said this was likely undiagnosed COPD.

19. At the end of January 2019, the Trust reviewed Mrs G in its oncology clinic. It queried her COPD diagnosis and wondered if this was accurate. Mrs G’s Trust clinician at the time sent a request for a respiratory colleague to review her. The records show the clinician understood there to be more than one condition which may have been affecting Mrs G’s lungs, such as her breast cancer, a blood clot and evidence of emphysema on her CT scan.

20. In March 2019 Mrs G was admitted to the Trust with increased breathlessness and a cough. Whilst she was an inpatient, the Trust treated Mrs G with steroid medication and nebulisers to help her breathe. It carried out investigations and diagnosed her with pneumonia.

21. After a further CT scan in March the Trust found the stent inserted in Mrs G’s oesophagus in December 2018 was causing a blockage in her left main airway (the left main bronchus) which was causing her breathlessness. It found the upper part of Mrs G’s left lung was at risk of collapsing.

22. The Trust discussed treatment options with Mrs G, which included removing the stent. Records show Mrs G agreed to keep the stents in place and undergo weekly chemotherapy with Taxol (a medication to treat breast, ovarian and lung cancer). This was noted to carry less risk of collapsing her lung. The Trust also said if Mrs G responded well, in two to three months she may be able to undergo additional cancer treatment such as radiotherapy.

23. As a result of a review carried out in March 2019, the Trust received the report from Trust B which Mrs G understood it had sent approximately 14 months earlier in January 2018. This report confirmed Mrs G’s cancer had spread to her oesophagus.

24. We can see from Mrs G’s records in April 2019 her persisting symptoms relating to her oesophagus remained and her health worsened. The Trust admitted Mrs G for further monitoring on 12 April 2019.

25. On 27 April 2019, after being discharged earlier that day, Mrs G was readmitted as she continued to cough up blood.

26. Sadly, Mrs G died on 28 April 2019. Mrs G’s cause of death was noted to be an upper gastrointestinal bleed (a bleed in her oesophagus) and metastatic breast cancer.

Misdiagnosis of stent blockage

31. Miss H complains the Trust misdiagnosed her mother’s upper GI stent blockage as COPD. She says Mrs G’s symptoms, including her difficulties breathing, were misdiagnosed as COPD in December 2018.

32. Miss H says in March 2019, the Trust explained her mother did not have COPD, but that her stent was blocking her left main bronchus.

33. In its response to Miss H, the Trust said it reviewed Mrs G in October 2018 after she reported being fed up with the stent she had in her oesophagus. She said she had ongoing issues with swallowing and breathing. The Trust’s gastroenterology team reviewed Mrs G in October 2018.

34. The Trust said it investigated Mrs G’s symptoms throughout November and December 2018. The Trust explained that during this time it referred Mrs G to Trust B for a gastrointestinal endoscopy, also known as a gastroscopy or upper GI endoscopy. This is a procedure used to examine the upper part of your digestive system, which includes the oesophagus.

35. The Trust requested biopsies of the affected area as it thought Mrs G’s cancer may have spread. It says the biopsies did not show evidence of cancer, or other significant changes in Mrs G’s oesophagus. It says the results did show some inflammation and narrowing. It agreed with Mrs G to insert another stent to help relieve these symptoms.

36. In December 2018 the Trust did a CT scan, and it initially considered Mrs G’s breathing difficulties were related to a blood clot and considered this may be as a result of COPD.

37. In March 2019, because of Mrs G’s frequent admissions the Trust requested a review of her care and treatment. It also revisited Mrs G’s COPD diagnosis and the CT scan it had carried out in December 2018. Upon its review, the Trust said the CT scan revealed Mrs G’s stent was causing a blockage in her left airway.

38. GMC guidance says clinicians must adequately assess the patient’s conditions and promptly provide or arrange suitable investigation or treatment where necessary. GMC guidance also says clinicians must provide effective treatments based on the best available evidence.

39. Mrs G’s records show the Trust obtained several CT scans between December 2017 and March 2019. We can see the scan it carried out in December 2017 was the first time the Trust identified Mrs G may have had moderate emphysema, which is a type of COPD.

40. Our radiologist adviser reviewed Mrs G’s CT scans to help us understand if the Trust failed to act in line with applicable guidance and so misdiagnosed Mrs G’s upper GI stent blockage as COPD. Our radiologist adviser explained Mrs G’s case was very complex, involving multiple clinicians from different teams at the Trust. We understand it was in line with the GMC guidance for the Trust to diagnose Mrs G with COPD, based on the evidence available to it. This is because the CT scan carried out in December 2018 did show objective evidence of emphysema, which is a type of COPD, and so supported that diagnosis.

41. Our radiologist adviser also clarified that given Mrs G's symptom of shortness of breath, which is a common indicator of COPD, it was in keeping with the GMC guidance for the Trust to consider COPD as a contributing factor to her condition.

42. Our gastroenterology adviser told us Mrs G’s stent blockage would have been difficult to identify and explained that stent blockages are not always easily noted on CT scans. They explained, in some cases, clinicians cannot be certain what is causing the patient’s problem when they have many significant symptoms.

43. Our radiologist adviser also told us it was unlikely Mrs G’s stent would have caused her shortness of breath. They independently shared the same view as our gastroenterology adviser and said it was not clear on the CT scan done in December 2018 that Mrs G’s stent was causing the blockage. They explained the narrowing of Mrs G’s left main bronchus was not obvious and was only apparent in hindsight, knowing now how Mrs G’s condition developed.

44. We can see from Mrs G’s records that she had complex health conditions which included having previous stents fitted to help with the narrowing of her oesophagus. As we know, Mrs G also had a diagnosis of metastatic breast cancer and significant symptoms relating to shortness of breath, indigestion and difficulties swallowing.

45. Considering the views of our radiologist and gastroenterology advisers, and the relevant guidance, we have found the Trust acted in line with the GMC guidance described in paragraph 40. We have not identified that there was a failing in the Trust reaching a diagnosis of COPD at that time.

46. We are truly sorry to hear of Mrs G’s death and what Miss H has been through. She tells us how difficult this period was for her and how much this has affected her. We hope our work helps to answer her outstanding concerns.

Missed report from January 2018

47. Miss H told us she has concerns the Trust missed a report shared by Trust B in January 2018 which confirmed her mother’s cancer had spread to her oesophagus. Miss H told us the Trust did not find this report until 14 months later, in March 2019. We can understand why she has concerns about this and why she questions whether there was a missed opportunity to treat her mother.

48. In its response to Miss H the Trust explained the 2018 report had been provided in March 2019 after its oncology team carried out a review of Mrs G’s records, which included contacting Trust B.

49. The Trust later gave us more details about what happened leading up to the missed report and how it was later found. It said it first saw Mrs C in November 2017 when she came in with symptoms including trouble swallowing and acid reflux. These can be signs of cancer, so the Trust arranged for her to have an OGD, which is a camera test to look inside her oesophagus.

50. During the test, the Trust found a narrowing in her oesophagus, which raised concerns. It referred her to a specialist team at Trust B for further checks. Mrs G’s records show that the Trust also took a biopsy from her oesophagus, which came back showing no signs of cancer.

51. In January 2018, Trust B decided to do more tests, including another biopsy. This second biopsy showed that Mrs G’s breast cancer had spread to her oesophagus. These tests were part of Trust B’s own follow-up process and so were not requested by the Trust.

52. The Trust explained that, because its own biopsy did not show cancer, there was no need to start urgent cancer treatment. That meant the usual fast-track cancer care rules did not apply. The Trust said it was not expected to take any further action unless it received new information showing cancer had been found. It confirmed it did not receive or know about the January 2018 report until 2019.

53. The Trust said this happened because there is no shared NHS system that links patient records between hospitals. Because of this, it could not see the tests done or results by Trust B. The report only came to light when one of the Trust’s doctors reached out to Trust B directly.

54. Our Principles say good administration by public bodies means handling information properly and appropriately and keeping proper and appropriate records.

55. Our oncology adviser confirmed the Trust’s account to be an accurate reflection of its responsibilities. They explained the responsibility for chasing up patient results lies with the individual that requests it or, in this case, the Trust that requests the investigation. As we can see the repeat biopsy was recommended and undertaken by Trust B, it was its responsibility to act on the results, including sharing them with other clinicians if appropriate.

56. After reviewing Mrs G’s records, we cannot see Trust B sent the biopsy report from January 2018 to the Trust. Therefore, without Trust B sharing the result with the Trust it would not have known there was information it did not have and so could not have considered it. For this reason, we find the Trust’s actions were in line with Our Principles and we have not seen that it failed to handle Mrs G’s information properly or did not keep proper and appropriate records.

57. Whilst we have not identified any failings in the Trust’s actions, we thought it would be helpful to Miss H to share that oncology adviser explained the nature of metastatic breast cancer means it is likely to spread further. They told us that, if the Trust had received and reviewed the report in January 2018, this would not have changed Mrs G’s treatment. This is because the type of medication she was on was also appropriate to treat the cancer which had spread to her oesophagus.

58. The palbociclib guidance for previously untreated metastatic breast cancer (NICE TA49) recommends palbociclib is used alongside an aromatase inhibitor. We can see from Mrs G’s records that, when she was diagnosed with metastatic breast cancer, the Trust prescribed her palbociclib and letrozole (an aromatase inhibitor) in April 2018.

59. We hope Miss H is reassured that even if the diagnosis of metastasised breast cancer to Mrs G’s oesophagus had been made sooner, the treatment would not have changed. Mrs G was receiving the recommended treatment, as set out in the NICE guidance reference above, and was responding to this. We hope this provides some comfort to Miss H.

60. We recognise that this experience has been extremely upsetting for Miss H and we thank her for sharing details of what happened. We hope this report has clearly explained the reasons for our decision.

1. We have not found failings in relation to the concerns Miss H has told us about. We did not see any evidence the Trust inappropriately misdiagnosed Mrs G or that it missed a report which identified Mrs G’s cancer had spread.

2. We have decided we will not uphold the complaint.

3. We were sorry to hear about the circumstances that led to Miss H bringing this complaint after the sad death of her mother. We understand the experience has caused her much distress. We hope this report provides some resolution to her concerns.