CHC
23. Dr O says that on 1 August 2019, his family met with Mrs A’s doctor and the deputy sister of the ward. Dr O explained to them that Mrs A had rapidly deteriorated since her last stay and could not walk.
24. He says the doctor confirmed that Mrs A only had weeks to live, or months at most. He says they agreed that she was rapidly deteriorating and may be entering a terminal phase. Staff advised they would complete the fast-track CHC funding documents and forward them to the Clinical Commissioning Group (CCG). They were advised this would lead to Mrs A being placed somewhere where she could be given palliative care.
25. Later that day, Dr O got a phone call saying that Mrs A did not qualify for fast-track CHC funding. They phoned the CCG to complain and were told it did not get the application from the Trust. They feel the specialist discharge nurse, who advised them that Mrs A did not qualify for the funding, stopped the application from being submitted. Mrs A qualified for the funding on 27 August 2019.
26. In its complaint response the Trust said Mrs A was considered for fast-track funding. It said that based on clinical evidence at the time, Mrs A did not qualify because she did not seem to be rapidly deteriorating or entering the terminal phase of her life, which are the main criteria for fast-track CHC funding.
27. The Trust says these reasons were given by the discharge nurse:
• Mrs A’s observations were stable • Mrs A had good oral intake with body mass index (BMI) of 20 and was feeding independently • she was transferring safely to a chair and sitting independently • there were no symptom management needs such as pain, nausea or vomiting.
28. The Trust says that details of a conversation that took place between the Trust and Mrs A’s family on 5 August 2019 were noted. These say that Mrs A was stable and not close to death at the time. This is because deterioration was not as rapid as they had thought and the family agreed with a plan for discharge to a nursing home. This was to be done through a referral to the community palliative care team, as suggested by the fast-track specialist discharge nurse.
29. The Trust says fast-track CHC decisions are based on clinical presentation.
30. Fast-track CHC funding is for individuals with a rapidly deteriorating condition that may be entering a terminal phase and may require ‘fast-tracking’ for immediate provision of NHS CHC.
31. The National Framework says this about ‘fast-track referrals’:
‘The intention of the fast-track pathway is that it should identify individuals who need to access NHS Continuing Healthcare quickly, with minimum delay, and with no requirement to complete a Decision Support Tool (DST). Therefore, the completed fast-track pathway tool, with clear reasons why the individual fulfils the criteria, and which clearly evidences that an individual is both rapidly deteriorating and may be entering terminal phase, is in itself sufficient to establish eligibility.’
32. From looking at the evidence, we can see the first consideration for a fast-track referral was on 1 August 2019. The notes show the Integrated Discharge Team fully considered Mrs A’s physical condition and fully reviewed all available medical reports and physical measurements, observations and treatment plans for Mrs A.
33. Our CHC adviser noted that, at the time, Mrs A was seen to be stable and showing some signs of improvement. The medical records show she was ‘medically stable’.
34. This supports the decision of the discharge nurse that a fast-track referral was not needed. Our CHC adviser says Mrs A was not at the stage in her deterioration where she was ‘both rapidly deteriorating and may be entering terminal phase’.
35. The discharge nurse made an appropriate decision to not submit a fast-track referral based on Mrs A’s presentation at the time. We have found no failings in this part of the complaint.
Paraprotein levels
36. Dr O explains he was told on 26 July 2019 that Mrs A had paraprotein levels of 34 in August 2018, but this was never monitored or treated at the time.
37. He also says the family were never told about the high paraprotein levels, and neither was Mrs A’s GP.
38. Dr O says the only certain way to diagnose multiple myeloma is a bone marrow biopsy, but by July 2019 Mrs A was too unwell and frail. He says that if they had been told at the time, a bone biopsy could have been done when she was well enough.
39. Dr O says that because of her bladder cancer, Mrs A continued to have six doses of radiotherapy. Dr O says that by not communicating the high paraprotein levels, the Trust denied Mrs A and themselves the opportunity to choose Mrs A’s treatment. He says that not knowing she was so unwell meant that decisions were not made to put her in a more comfortable and supportive environment for nine weeks, instead she spent this time on a hospital ward.
40. The Trust says Mrs A’s paraprotein levels had been monitored since April 2017 when they were 13.8, and in August 2018 the level was noted to be 34.
41. The Trust says that considering Mrs A’s co-morbidities and bladder cancer, it would not be unusual to have elevated paraprotein levels. It says when these are elevated, medical teams tend to monitor the levels. It says an elevated paraprotein level does not mean multiple myeloma. It says there were no other signs in August 2019 to suggest multiple myeloma.
42. The Trust feels that Mrs A’s paraprotein levels had been stable over the last 12 months.
43. The Trust concluded that Mrs A may have had an underlying diagnosis of multiple myeloma, but with multiple acute issues it was difficult to diagnose.
44. It says the levels were discussed with the inpatient team and Dr O and his wife in July 2019. It explained that further investigations would not be in Mrs A’s best interests as she was not fit enough for any treatment, even if a diagnosis of multiple myeloma was confirmed. The Trust does not feel that a diagnosis of myeloma would have changed the outcome or treatment plan.
45. In its final response, the Trust refers back to its previous complaint response saying that when paraprotein levels are elevated, in the absence of other symptoms that could not be attributed to another cause, the medical team would manage her paraprotein levels.
46. Lastly, the Trust apologised that Mrs A’s family were not made aware of her raised paraprotein levels.
47. As part of our primary investigation, we viewed a letter from the haematology department to the consultant in older person’s medicine. It states that Mrs A had a paraprotein level of 28.1g/l, but this was considered stable throughout the year. Her calcium remained highly elevated at 2.77, but her PTH (a substance made by the parathyroid gland that helps the body store and use calcium) level was normal at 4pmoI/l.
48. It says Mrs A may have an underlying diagnosis of multiple myeloma, but with multiple acute issues it is difficult to tell which issues are contributing to the abnormalities.
49. We looked at the blood cancer UK documentation on myeloma. This states that:
‘When you have myeloma you produce abnormal antibodies instead, called paraproteins. These antibodies can’t fight infections properly. You might hear a paraprotein also being called a monoclonal gammopathy, an M protein or an M-spike.
The presence of paraprotein can be an important sign of myeloma, although in some cases, myeloma cells only produce the light chain part of the paraprotein, or more rarely, very little or no paraprotein at all’.
50. A paraprotein is an abnormal finding in any quantity or at any age and should be investigated and/or observed. Our haematology adviser says that not all myeloma cases are symptomatic or need to be treated in the absence of anaemia (Mrs A’s anaemia was thought to be due to iron deficiency), high calcium due to hyperparathyroidism (where the parathyroid glands in the neck, near the thyroid gland, produce too much parathyroid hormone), renal impairment (low blood pressure and sepsis) or bony lesions.
51. From looking at Mrs A’s medical records, the main factors in her deterioration were repeated urinary infections, sepsis and bleeding secondary to her advanced bladder tumour.
52. Our haematology adviser says that although multiple myeloma does not seem to have been the main cause of Mrs A’s symptoms, it could have contributed to some of the symptoms, most likely her anaemia and infections.
53. We can see that Mrs A was referred to haematology in April 2019 and her medical records show a paraprotein had been detected the year before.
54. As part of our investigation, we contacted the Trust to say we could see that Mrs A was seen by a geriatrician when she was in A&E, who ordered more tests. But there is no evidence of a paraprotein test being requested or of staff having any suspicion of a problem like multiple myeloma.
55. We asked the Trust if it could give us any information on why the test was requested as it is very specific, and who requested this. But it says that this information could not be located.
56. From reading the medical notes, this result may have been overlooked in 2018 as there is no mention of it at the time.
57. Our haematology adviser says it would have been better for the paraprotein levels to be investigated further to clarify the diagnosis and make a management decision. Useful tests at that time would have been a bone marrow examination and bone imaging by magnetic resonance imaging (MRI) or a positron emission tomography scan (PET).
58. It is likely that if Mrs A had myeloma, it would have been present in 2018 because the paraprotein level was high at 34 g/l. Investigation would have confirmed whether the myeloma needed treatment or not, and an informed decision could have been made with the family’s involvement.
59. Our haematology adviser says, on balance, Mrs A did not need treatment for likely myeloma at the time, because it did not seem to be causing her problems over and above her other conditions. Also, while the paraprotein levels should have been investigated, this would not have affected the outcome of Mrs A’s bladder tumour treatment or her general frailty.
60. GMC guidance, ‘Good medical practice’, provides the standard for communication. It says:
‘You must work in partnership with patients, sharing with them the information they will need to make decisions about their care, including: • their condition, its likely progression, and the options for treatment, including associated risks and uncertainties’.
61. We cannot find any evidence to suggest the Trust had an open discussion with the family about the paraprotein results. The Trust should have included the family in shared decision-making.
62. Dr O realises that Mrs A had multiple conditions, including ongoing treatment for bladder cancer. He says if the family knew about the paraprotein levels or the possibility that Mrs A had multiple myeloma, they may have made different treatment decisions. He says they could have considered more options for the last few weeks of Mrs A’s life, like putting her in a more comfortable environment.
63. We think it is likely that if the paraprotein levels had been investigated sooner, this would have given Mrs A and the family clarity on her conditions and allowed them to be fully informed when discussing treatment options. We cannot say this would have changed the treatment Mrs A had or the rate of her decline, but the paraprotein levels should have been investigated.
64. There was a missed opportunity to investigate fully, explore treatment and for Mrs A and her family to consider other options.
65. We cannot say the outcome would have been any different, but we understand the family are left with uncertainty about if they could have made Mrs A more comfortable towards the end of her life. There is also uncertainty about whether the Trust would have been able to give Mrs A treatment for the paraprotein levels if this was affecting her symptoms. This uncertainty is an injustice to Dr O and his family.
66. As the Trust has not identified this failing or put right the impact it had on Dr O and his family, we uphold this part of the complaint. We consider the Trust did not act in line with the relevant guidance and this caused an injustice.