Management of MGUS
16. The Trust diagnosed Mrs D with light chain MGUS in April 2020. MGUS itself is not blood cancer (myeloma). People with MGUS do have a higher risk of developing myeloma and amyloidosis in the future.
17. On 16 April, she attended an appointment at the Trust, and a clinician told her she did not have myeloma. They initially arranged to monitor her with blood tests every three months and then extended this to every six months.
18. The Trust managed Mrs D’s blood tests through nurse led clinics. The Trust asked Mrs D to go for blood tests, and it reviewed the results. It would then arrange to speak to her in telephone appointments.
19. Mrs D had telephone appointments on 25 June and 1 October in 2020. In 2021, she had telephone appointments on 21 January and 22 July. She went on to have telephone appointments on 20 January 2022 and in July of that year. During the telephone calls, clinicians told her that her blood test results were normal, and she did not need any treatment.
20. Our adviser helped us to understand the six-monthly nurse led clinics and telephone appointments were appropriate and in line with the BSH’s ‘Investigation and management of monoclonal gammopathy of undermined significance’ which says:
‘Newly diagnosed MGUS patients should have appropriate blood tests (FBC, creatinine, serum calcium, paraprotein and serum FLC levels) performed six months after diagnosis, with annual follow-up thereafter, although the interval can be longer for patients with low-risk MGUS and further investigations reduced if life expectancy is short.’
21. We consider the Trust acted in line with the above guidelines and provided appropriate and timely testing following Mrs D’s diagnosis of light chain MGUS. Therefore, we have not found failings in this part of the complaint.
22. Ms L specifically complained that the Trust did not review her mother face to face (apart from on one occasion). She also told us her mother’s condition deteriorated, she became more breathless, and her mobility declined. She says the Trust should have seen her mother face to face and had it done so staff would have noticed her deterioration.
23. Mrs D’s medical notes do not show that she raised any concerns about a deterioration in her health until July 2022. At this point, she told the Trust she was suffering from atrial fibrillation (an irregular heartbeat in the upper chambers of the heart) and ongoing cardiology involvement (from another Trust). We recognise this is not her family’s recollection and they say she did raise concerns about breathlessness.
24. Our adviser explained that nurses overseeing the clinic were able to review Mrs D’s blood test results in line with their role but would not necessarily have had a full understanding of the symptoms of amyloidosis. Our adviser explained it would therefore be the role of a GP to consider any new symptoms Mrs D had and make appropriate referrals.
25. Our adviser helped us to understand the Trust’s management of MGUS through nurse led clinics and telephone appointments fell within the above BSH guidelines and is usual practice for the management of her condition.
26. The Trust acted appropriately and in line with the above BSH guidelines. Therefore, we have not found failings in this part of the complaint.
Diagnosis of myeloma and amyloidosis
27. Ms L also complains the Trust did not diagnose her mother’s, myeloma and amyloidosis from April 2020 to September 2022.
28. Amyloidosis is a general term for a group of conditions where an abnormal protein, called amyloid, builds up in the body’s tissues. The amyloid protein folds abnormally, creating amyloid deposits.
29. Although the amyloid deposits in amyloidosis are not themselves cancerous, the condition can be associated with myeloma. Patients with MGUS have a higher risk of developing both myeloma and amyloidosis and as per the above BSH guidelines should undergo regular blood tests.
30. Mrs D’s medical records show her light chains remained elevated but stable. A high amount of light chains in a blood test can indicate myeloma.
31. The Trust also checked Mrs D’s cardiac markers (substances released into the bloodstream when the heart is damaged or under stress). This included ProBNP (a protein produced by the heart’s ventricles) and troponin levels (a protein found in heart muscles). It also included, her urinary albumin (a protein which can indicate kidney problems) to creatinine ratio (a waste product which can indicate kidney problems) all of which were normal.
32. Our adviser helped us to understand the Trust carried out appropriate blood tests in line with the above BSH guidelines. They further explained amyloidosis can be difficult to detect and there is no failsafe test to detect this.
33. Additionally, our adviser confirmed the Trust’s interpretation of Mrs D’s test results was accurate. They explained results did not show signs of amyloidosis or myeloma prior to her hospitalisation in April 2022 and subsequent test results with a different Trust.
34. Therefore, we do not find failings in the Trust’s lack of diagnosis of amyloidosis or myeloma. There is not anything further it should have done to investigate Mrs D’s symptoms or to treat her elevated light chains.
35. We appreciate Ms L told us Mrs D’s health deteriorated over this period of care. We acknowledge how difficult this would have been for her family to witness. We hope our final report provides some reassure there was nothing further the Trust should have done to diagnose and treat her at the time.
Conclusion
36. We have found, the Trust managed Mrs D’s condition appropriately through regular blood tests and without face-to-face appointments. Additionally, we have not found it should have diagnosed her with amyloidosis or myeloma, or that it should have provided treatment for these conditions. We find it reviewed her and carried out appropriate blood tests in a timely manner, in line with the above BSH guidelines.