Lupus medication
23. We firstly considered what happened when the Trust gave Mr C his lupus medication, prednisolone, in April and May 2023. To help us understand what should have happened our general medicine adviser referred us to the NICE guidance about steroid use.
24. It says prednisolone should not be stopped suddenly, because the body gets used to high levels of this drug and can stop producing its own steroid. It recommends gradual withdrawal for people whose disease is unlikely to relapse and who have taken more than 40mg oral prednisolone daily for more than one week.
25. The medical team sought advice from the dermatology and rheumatology team about Mr C’s dose of 40mg of prednisolone. On 20 April, the rheumatology team advised to wean this medication to 35mg at a rate of 5 mg per week. They also said to start azathioprine (an immunosuppressant medication that treats autoimmune conditions) at 25mg increasing weekly for three weeks.
26. The Trust accepts it did not give Mr C any prednisolone medication between 21 and 27 April and on 4 May. The medical records confirm this.
27. We have decided this was not in line with the NICE guidance about steroid use and the Trust failed to give Mr C his lupus medication.
Impact
28. Our general medicine adviser explained Mr C did not develop the problem of ‘addisonian crisis’ (the serious condition associated with stopping steroids suddenly). Mr C did not suffer critical low blood pressure or changes to his blood salt levels which one might expect to see in those circumstances.
29. Our general medicine adviser told us about the other effects to the skin of stopping the medication for different periods of time. A longer period, such as a week, would cause effects while a shorter one, such as a day, would not.
30. We considered what Mrs B told us about her father’s lupus scabs returning. The Trust’s medical records show the rash on Mr C’s back continued, and it was using topical ointment. Following his discharge, a nurse at St Barnabas noted he had pain and sore skin around and inside his mouth, throat and on his back.
31. We appreciate the missed medication and worsening skin condition caused distress. We cannot say, even on the balance of probabilities, that Mr C’s skin would not have worsened even if the Trust had given the medication. There was though a missed opportunity to prevent this from happening and Mrs B is left not knowing if her father’s skin condition could have been any better.
32. Our Principles for Remedy are reflected in the NHS Complaint Standards which say organisations should offer fair remedies to put things right and identify learning and use it to improve services.
33. The Trust sent us a copy of an action plan it has prepared. We can see it has now implemented an electronic system for prescribing and administration of medication. The system supports the medical staff and provides alerts. It has seen a reduction in missed medications and incidents. The matrons on the wards are also carrying out monthly audits.
34. It is pleasing to see the Trust has recognised the need for learning which is in line with our Principles for Remedy. We think it needs to go further and consider a financial remedy, and we have made a recommendation for this.
Discharge
35. We then considered what happened when the Trust decided to discharge Mr C on 4 May. To help us understand what should have happened and to consider the discharge itself, our general medicine adviser referred us to NICE guidance for transition between hospital and community setting.
36. The guidance tells us the criteria for a patient remaining in an acute hospital care setting is when there is acute functional impairment in excess of home or community care provision and during last hours of life.
37. The Trust moved Mr C to the discharge lounge on 1 May and contacted Mrs B about the discharge arrangements.
38. Mr C’s blood tests were stable and did not show any signs of deterioration prior to his discharge. When he was in the discharge lounge, the medical records show he had a NEWS (national early waning score) of zero. NEWS is a standardised tool used in healthcare to assess a patient’s severity of illness.
39. On 1, 2 and 3 May he had a NEWS score of two due to a slightly low systolic blood pressure (the top number in a blood pressure reading which represents pressure in the arteries) of 99 and 95.
40. We have noted from the medical records that this was not unusual for Mr C, and his oxygen saturation (measurement of oxygen in blood) was normal. Our general medicine adviser explained there would be no need to act upon this. The Trust discharged him more than 24 hours later. The medical records do not suggest any signs of serious deterioration of his condition prior to discharge.
41. We note Mrs B said she had to lift her father into his home. We asked our general medicine adviser about his functional state immediately prior to discharge. The nursing records show he needed help of one person plus a zimmer frame.
42. This was the level of function at which the Trust had planned for help at home. Whilst in the discharge lounge on 3 May, nursing staff noted he was ‘transferred to bed with assistance of two staff’.
43. Our general medicine adviser explained this could have represented a deterioration of his functional level, and in older frail individuals, this can be due to a medical deterioration. Frail patients can be subject to variable function from day to day.
44. Without any further assessments from that time, it is impossible to know if this was a sustained deterioration or whether he was able to transfer with help of one again at the time of discharge on 4 May.
45. We do not have enough evidence from the medical records to say that any sustained deterioration happened before Mr C left hospital. We cannot say, even on the balance of probabilities, that any deterioration prior to leaving hospital led to increased pain or distress.
46. The GP record shows a nursing visit took place at home on 4 May at 1.07pm. An ambulance attended because Mr C’s oxygen saturation level had dropped to 85 and recovered to 95. The ambulance staff assessed Mr C and deemed him safe to stay at home because his condition had improved. He then deteriorated much more significantly over the next 24 hours.
47. On 5 May an assessment shows he was shivering, confused and looked like he was at the end of his life. It therefore seems, on the balance of probabilities, the deterioration happened after Mr C’s discharge and was not predictable.
48. It must have been deeply concerning and heartbreaking for Mrs B when her father deteriorated and sadly died after his discharge home. We recognise our explanation cannot change what happened and we hope it provides assurance that there is no suggestion the Trust should not have discharged her father.
49. It is our view clinicians followed NICE guidance for transition between hospital and community setting. His needs were not more than home or community care.
50. We then went onto consider whether the Trust arranged appropriate ongoing support for Mr C after his discharge. NICE guidance for transition between hospital and community setting says clinicians should develop a discharge plan by sharing assessments, health status and medicine information with the community teams.
51. The medical records say the Trust assessed and arranged a package of care for four times a day which it felt would meet Mr C’s needs. It also made referrals to the district and community nursing service.
52. The multidisciplinary team (a group of medical professionals from different specialities) engaged in Mr C’s discharge and documented their assessments clearly. This consideration is in line with the NICE guidance for transition between hospital and community setting.
53. Our general medicine adviser also referred us to NHS England guidance for advance care planning. These provide guidelines about the process of discussing poor prognosis, future care preferences and wishes of patients and relatives.
54. Our general medicine adviser helped us understand it would have been appropriate to consider advance care planning in someone with this degree of frailty.
55. We have not seen any records of the Trust having conversations about future care preferences, prognosis and Mr C’s wishes with him or Mrs B. The Trust accepted its communication about this could have been better.
56. The Trust apologised for not having had clearer conversations regarding his overall prognosis. It accepted it would have been appropriate to have an open and honest discussion about his long-term outlook and what to expect over the coming days and months. This could have helped prepare for such an outcome.
57. We have seen no evidence in the medical records that the Trust considered these guidelines, and it is our view that this is a failing. We have decided it did not act fully in line with the discharge planning because it did not consider advance care planning.
Impact
58. Mrs B felt unprepared for the care her father needed when he returned home. He was unable to swallow any oral medication, he needed a catheter, was in pain and became bedridden. Mr C’s GP discussed a fast-tracked package of palliative care with the family on 5 May. The GP felt he was at end of life and contacted St Barnabas for support.
59. The Trust’s medical records do not indicate signs Mr C was imminently at the end of his life before his discharge. Our general medicine adviser helped us understand he was already severely frail and made weaker by the acute illnesses which caused his admission to hospital.
60. Within the complaint response, the Trust refers to Mr C’s frailty, and that although he was stable, he was very vulnerable to further deterioration.
61. The hospice records say Mr C did not wish to be readmitted to hospital, and he had capacity to make this decision. Our general medicine adviser helped us understand that had the Trust carried out advance care planning and discussions about this, it could have anticipated and met his needs more quickly.
62. The hospice records say Mr C had mouth and throat ulcers, and oral medications were difficult. We note the Trust said he was able to swallow tablets when leaving hospital, the hospice records suggest this was difficult from 6 May, two days after discharge. We know that Mr C suffered with mouth ulcers early in his admission.
63. The Trust could have considered the use of oral medication in liquid form. It could also have ensured better signposting to organisations for assistance, as part of advance care planning.
64. It must have been distressing for Mrs B when her father deteriorated and sadly died at home. We have decided that communication and consideration of advance care planning could have been better and was not in line with NHS England guidance for advance care planning.
65. There was a missed opportunity to consider this. Because this did not happen, we do not know what additional support the Trust might have arranged for Mr C. This could have lessened the distress caused to Mrs B when her father returned home.
66. We can see from the Trust’s action plan it has undertaken a project with the Emergency Care improvement Support Team. They are a clinically led national NHS team that clinicians have designed to help health and care systems to deliver high quality emergency care. It supported the Trust with analysing how it was performing discharges and where it could make improvements.
67. The Trust’s focus has been improving patient’s discharge by ensuring it considers all therapies and makes plans in a timely manner. It shared learning about the importance of referrals to multidisciplinary teams prior to discharge. It has also increased communication huddles on the wards to assist with communication and patient care.
68. It is pleasing to see the Trust has recognised the need for learning which is in line with our Principles for Remedy. It has not however gone far enough in considering the learning around advance care planning. The Trust has also not considered a financial remedy. We have made a recommendation for these.
Complaint handling
69. We then considered what happened when the Trust received Mrs B’s complaint.
70. We have seen a copy of the Trust’s own procedure for missing records. It provides the steps it should take to try to find and locate missing medical records and how to note this on its system.
71. Mrs B sent her complaint to the Trust on 16 August 2023. The Trust acknowledged this and began its investigation.
72. It sent an email to Mrs B on 23 November to explain her father’s medical records had gone missing in transit from one department to another. It offered an apology and continued to look for these.
73. The Ombudsman contacted the Trust to ask if it had found the medical records and on 2 September 2024 it confirmed it had and would re-start its investigation. It sent its complaint response on 15 October 2024 and apologised for its error.
74. The Trust told us it located Mr C’s medical records which it had filed away in an area of the health records department but had not noted this on its system at the time. This must have been very frustrating and upsetting for Mrs B. We have decided the Trust mislaid Mr C’s medical records and delayed its complaint response by 14 months.
Impact
75. We know that the Trust misplacing the missing medical records added insult to how Mrs B already felt. It caused additional distress and added to the grieving process whilst she waited for it to find the records and respond to her concerns.
76. We can see from the Trust’s action plan, it has shared the concerns about missing records with the medical records team, and it is now conducting monthly audits and spot checks to ensure this does not happen again.
77. It is pleasing to see the Trust has recognised the need for learning which is in line with our Principles for Remedy. It has not gone far enough though and should consider a financial remedy, and we have made a recommendation for this.