Royal Cornwall Hospitals NHS Trust

4. Mrs C complains that during her brother, Mr K’s admission to the Trust from 4 January 2024, the Trust: • Misdiagnosed him with anti-synthetase syndrome despite suspecting dermatomyositis from the start • Failed to send a separate blood sample for myositis testing or mark the blood test that was sent as urgent • Failed to follow treatment advice from dermatomyositis specialists at King’s College Hospital • Never told her brother he might have dermatomyositis and failed to tell family until belated test results returned • Failed to provide him adequate nutrition throughout his admission • Failed to respond appropriately or obtain the critical care team’s involvement when required, in response to national early warning score (NEWS) observations • Gave her brother paracetamol, morphine, gabapentin, melatonin, amitriptyline and remifentanil on 28 January which were inappropriately administered in combination, contraindicated for him, and given against his wishes to not be sedated.

5. Mrs C says she and the whole family are devastated by the avoidable death of her brother on 29 January 2024. She says if not for the misdiagnosis and delayed blood results, the presence of the MDA5 antibody would have been known and dermatomyositis could have been diagnosed as early as 9 January. She says her brother would have been aware of his condition and should have received the appropriate treatment for it, in line with the right specialist advice and when he was stronger, giving him a greater chance to have avoided the development of interstitial lung disease, and a greater chance to survive. She says the lack of nutrition only weakened him.

6. Mrs C is left considerably distressed, having been denied the chance to advocate for her brother or consider opportunities for treatment outside of the Trust, without awareness of the diagnostic suspicion, and knowing he made clear he did not want sedation. She is left questioning whether the listed drugs had any contributory factor to her brother’s death the following day. She and family are fearful of needing hospital care in future having lost faith in the Trust.

7. To resolve her complaint, Mrs C would like the Trust to acknowledge its failings and apologise for their impact. She seeks improvements, for lessons to be learned and action taken to ensure these failings do not happen to anyone else in future. Mrs C also seeks a financial payment, in recognition of the impact caused by these failings.

8. Mr K was 52 years of age when he was admitted to the Trust on 4 January 2024, reporting a rash for two weeks and pain in both legs for the previous three days. It is recorded that he said he his fingertips first felt sensitive then a rash developed on his hands, before moving to his arms and elbows then knees and feet, and he developed mouth ulcers. Mr K reported the rash made his hands very painful, he had thigh, calf and shoulder pain, and he was struggling to move without aspirin.

9. Dermatology saw him on 5 January and recorded their clinical impression and working diagnosis of dermatomyositis. This is a rare autoimmune, inflammatory condition with unknown cause, where the immune system attacks health tissues, particularly the muscles and skin. The plan included sending blood samples for a myositis screen (myositis is the name for a group of rare conditions that cause weak muscles, with dermatomyositis being one). This would look for myositis antibodies, to inform the specific sub-type of dermatomyositis.

10. Mr K remained an inpatient, receiving input from a variety of specialist teams at the Trust, including dermatology, rheumatology, renal, haematology, infectious diseases, nephrology, dietetics and respiratory teams. External input into Mr K’s care was also gained from a dermatomyositis specialist at King’s College London, and a doctor at the North Bristol Hospital NHS Trust.

11. During his admission, Mr K was found to have staphylococcus aureus, a common bacterial infection, that was felt to have an impression of sepsis (when an infection becomes overwhelming and potentially life-threatening). He also developed interstitial lung disease (ILD, a term for a group of diseases that cause inflammation and scarring in the parts of the lung that manage gas exchanges, restricting deep breathing and decreasing oxygen intake).

12. On 23 January the Trust obtained the provisional results of the myositis antibodies test, which confirmed Mr K had MDA5 dermatomyositis. This sub-type is defined by the presence of specific antibodies that target the MDA5 gene protein, and it typically impacts the skin, joints and lungs. That same day a variety of specialists discussed Mr K’s care, and he was transferred to the intensive care unit (ICU).

13. Very sadly, Mr K died in the ICU on 29 January 2024. His death was confirmed as due to respiratory failure from interstitial pneumonitis (an inflammatory lung condition categorised as an ILD), with dermatomyositis sub-type MDA5 noted as a contributory condition.

14. Mrs C raised her complaint to the Trust. Remaining unhappy with the responses received, she asked us to investigate.

Misdiagnosis 18. Mrs C complains the Trust misdiagnosed her brother with anti-synthetase syndrome (ASS), despite suspecting dermatomyositis from the start. ASS is also a rare autoimmune, inflammatory condition.

19. We hope to assure Mrs C that evidence shows the recorded, working diagnosis was dermatomyositis from the start of her brother’s admission. We find dermatomyositis consistently documented as Mr K’s diagnosis and the Trust acted in giving him care in accordance with this. We do not see evidence to show there was any misdiagnosis of ASS as is alleged.

20. Our rheumatology adviser confirms the diagnosis was appropriate to the clinical findings. Mr K presented with typical clinical symptoms and features of dermatomyositis, and the Trust completed a raft of appropriate investigations to assist in reaching this diagnosis.

21. This included electromyography (EMG, looking at the electrical activity of the muscles), MRI scans, CT scans, echocardiography (looking at the heart’s structure and function), a skin biopsy and the appropriate blood tests. Whilst the specific sub-type was not confirmed until a later date, this did not prevent the diagnosis of dermatomyositis from being reached from the outset.

22. This was all in line with General Medical Council ‘Good Medical Practice’ guidance, which says:

‘You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must: • Adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient • Promptly provide or arrange suitable advice, investigations or treatment where necessary • Refer a patient to another practitioner when this serves the patient’s needs.’

Blood test 23. Regarding what happened with the myositis antibodies blood testing, we find records that support the Trust’s complaint response. This explained that blood tests were requested with samples taken shortly afterwards, at 5.49pm on 4 January. This included request for a test for myositis antibodies. The Trust explained these samples were received by the laboratory at the Royal Cornwall Hospital (RCH, a hospital within the Trust) that evening.

24. It said as some of the tests could not be performed at the RCH, these samples were sent to the laboratory at Derriford Hospital (DH) in Plymouth, at a different hospital trust. DH confirmed the samples were received on 6 January.

25. The Trust said it had previously been agreed between the RCH and DH that a separate sample should be sent for myositis tests so this could be immediately sent to the Royal United Hospital (RUH) in Bath, also a different hospital Trust. It said the audit trail for the sample at DH shows that no separate sample was sent for myositis testing, that there does not appear to have been communication from the RCH to DH asking for it to be sent urgently to the RUH.

26. The Trust said DH carried out the tests it was able to do in-house and once completed, DH forwarded the sample to the RUH on 17 January. It said the RUH confirmed receiving the sample on 19 January and carried out testing on 22 January.

27. Records show that on 23 January, a Trust rheumatology consultant contacted the RUH laboratory and received the results. Evidence shows the final results were uploaded onto the Trust’s system at 4.45pm on 25 January.

28. The Trust said this blood testing was conducted within the usual timescales for routine samples. It said the results of those tests may have been received more quickly if a separate sample for the myositis antibodies test had been sent to DH, which it would have forwarded to the RUH immediately, or if it had communicated with DH that the sample needed to be processed urgently.

29. Mrs C complains that the Trust failed to send a separate blood sample for myositis testing or mark the blood test that was sent as urgent. We recognise these complaints stem from concern about the time it took Mr K’s blood results to return, and we address this first.

30. Our rheumatology adviser explains that typical turnaround times for routine blood testing vary depending on hospital location, availability of the tests in question and the test site location. There is no national or standard guidance on the time this type of testing should take.

31. Our rheumatology adviser said a usual and reasonable timeframe, considered good medical practice, would be between six and 21 days. This broad timeframe accommodates for quicker turnarounds in circumstances where testing is done onsite, to longer timeframes where testing is sent offsite.

32. As the Trust did not have onsite testing facilities, our rheumatology adviser considered a period at the top end of the usual timeframe as reasonable. It was 19 days from the time Mr K’s blood sample was taken to the Trust receiving a provisional report of the results. It was 21 days to the time a formal report was uploaded onto the Trust’s system. This is within the period that is considered usual and reasonable.

33. General Medical Council guidance says doctors should promptly provide or arrange suitable investigations or treatment where necessary. We consider the blood testing in Mr K’s case was in line with this and consider it reasonable for the Trust to have said blood testing was conducted with the usual timescales for routine samples.

34. We return to Mrs C’s specific complaints, that the Trust failed to send a separate blood sample for myositis testing or mark the blood test that was sent as urgent.

35. In response to the complaint, the Trust explained it did not send a separate sample and so breached its own agreed process. We recognise that where there are agreed processes in place, these should reasonably be followed. Our rheumatology adviser clarified that there is no national guidance that says what should happen here, meaning whilst a breach of an agreed local process, we do not find a breach of national guidance occurred.

36. Further, we can see the requested myositis tests were still performed from the blood sample that was sent. Whilst the Trust did not follow its agreed process, this appears only to have resulted in additional time to receive results. We have already identified that the time taken for the result to have returned was reasonable.

37. Regarding Mrs C’s complaint that the test was not sent as urgent, we can look to guidance. General Medical Council guidance says doctors must treat patients fairly, providing or arranging tests and investigations based on the assessment of the patient’s needs and priorities. British Medical Association guidance says the doctor requesting the test is responsible for its urgency, and the treating team responsible for the patient should assess if the patient's symptoms warrant re-prioritisation as part of their regular review.

38. Records show the Trust sent these bloods as routine, and our rheumatology adviser confirms this was appropriate to the assessment of Mr K’s clinical need at that time. We do not find any evidence, either at the time the sample was sent or in the period the Trust waited to receive the results, to suggest any clinical need for the treating team to have re-prioritised or expedited this sample outside of the original routine process.

39. We recognise that the Trust upheld this part of Mrs C’s complaint. We hope the above explains that we do not see evidence that what happened fell outside of guidance or so far below expected practice, for us to consider it constitutes a service failure or caused any unreasonable delay.

Treatment 40. We know Mrs C is concerned that her brother did not receive the appropriate treatment due to her complaints of a misdiagnosis and delayed blood results. Whilst we do not find any evidence of service failure in relation to those complaints, we wanted to address the matter of Mr K’s treatment to provide further assurance to Mrs C that we find it was appropriate. We think the following will also help better explain our view of the next complaint, regarding specialist input.

41. As we have explained, the diagnosis of dermatomyositis had been reached from the second day of Mr K’s admission. Neither the time it took to reach this diagnosis nor the blood results to return caused any delay in Mr K receiving the appropriate triple therapy treatment.

42. Whilst there are various sub-types of dermatomyositis, our rheumatology adviser explains the management of the condition is the same. Results of a myositis antibodies test can help inform prognosis and treatment can be amended depending upon the results, to better target the condition. Yet standard treatment, regardless of sub-type, remains the same. This is explained by British Medical Journal guidance which says:

‘Initial treatment of muscle disease is with high-dose oral corticosteroids, followed by the addition of immunosuppressants or intravenous immunoglobulin in refractory cases.’

43. Recorded evidence shows this appropriate, standard treatment was given to Mr K in line with British Medical Journal guidance. He received triple induction therapy in the form of oral and intravenous (IV) steroids, cyclophosphamide (CYC, an immunosuppressant) and IV immunoglobulin (protein antibodies from human plasma). To explain the word used in guidance, a refractory case is a condition that does not respond well to standard treatments.

44. Our rheumatology adviser explains infection can typically occur alongside dermatomyositis, and evidence shows the Trust took this into account by providing appropriate antibiotic treatment. This meant Mr K received the appropriate treatment for the staphylococcus aureus infection that he was found to have.

45. Records also show antimicrobial, antifungal and anti-viral treatment was also started on a prophylactic basis (with the intention of preventing disease). Our rheumatology adviser explains this was appropriate to cover the possibility of additional infection, given Mr K’s high risk.

46. His risk was high due to the known risk of associated infection with having dermatomyositis, his immune system being compromised due to both the dermatomyositis and receiving CYC treatment, and as he was an inpatient as this alone can raise the risk of any person contracting infection from the hospital environment.

47. In addition, MDA5 dermatomyositis is also associated with rapidly progressive interstitial lung disease (RP-ILD). Evidence shows the Trust gave Mr K tacrolimus (an immunosuppressant) as part of his triple induction therapy. This was appropriate, in line with British Society for Rheumatology guidance which says:

‘Evidence exists to support use of… tacrolimus… alongside glucocorticoids early in the disease course to induce and maintain remission, although conflicting results exist in some cases.’

and

‘The use of ciclosporin or tacrolimus, alongside steroids, is to be considered in patients with RP-ILD.’

48. We know the issue of treatment was not one of Mrs C’s direct complaints, yet we hope the above assures her that her brother’s treatment was appropriate, alongside our explanation of finding no service failure with the above complaints.

Specialist input 49. Records show that on 23 January, after receiving the provisional report of the antibody results from the RUH, a Trust rheumatologist discussed Mr K’s case with a dermatomyositis specialist at King’s College Hospital (KCH). The records document this specialist input as follows:

‘He advises very aggressive treatment can resolve acute respiratory distress in MDA5 ILD. Recommends IV methylprednisolone, Tacrolimus 2mg OD then titrate according to blood monitoring, Tasocitinib, IV cyclophosphamide.’

and

‘Discussed [with the KCH specialist] RE: transfer to Kings – not feasible recommends we liaise with Bristol team.’

50. The rheumatologist then contacted the team at North Bristol Hospital NHS Trust (the Bristol team), and the doctor’s input is documented as follows:

‘Doesn’t feel transfer is necessary as not much more for them to add for now. Advises tacrolimus and tasocitinib not currently necessary. Need to give more time for the IVIG to work. Give IV MP x3 pulses, can give a dose of RTX or CYC, CYC would work quicker, if possible bronchoscopy should be done RE rule out infection.’

51. To explain the medical terminology for clarity, the KCH specialist recommended methylprednisolone (a steroid), tacrolimus (an immunosuppressant), tofacitinib (a JAK inhibitor, medication that blocks Janus kinase enzymes to reduce immune system overactivity) and cyclophosphamide (CYC, an immunosuppressant).

52. The KCH specialist also recommended the Trust liaise with the Bristol team. The Bristol team advised tacrolimus and tofacitinib were not currently necessary. They said to give the immunoglobulin more time to work, to give methylprednisolone (documented as MP) and either RTX or CYC advising CYC would work quicker. RTX stands for rituximab. It is an alternative immunosuppressant to cyclophosphamide but takes longer to become effective.

53. Mrs C complains that the Trust failed to follow treatment advice from the KCH specialist, and yet we can see this advice was followed in all aspects, except one. The Trust gave Mr K tacrolimus and CYC. It was already giving him steroids orally and started him on IV methylprednisolone the next day. The Trust liaised with the Bristol team, as the KCH specialist advised, subsequently following the Bristol team’s advice to not give tofacitinib.

54. Whilst the specialist at KCH advised giving tofacitinib, our rheumatology adviser explains this is not currently commissioned for use by NHS England for the treatment of dermatomyositis, nor was it at the time. As such, it would not be reasonable to expect it to be given as part of Mr K’s dermatomyositis treatment in this circumstance.

55. JAK inhibitors have an off-label indication for dermatomyositis, a term used to describe when a medicine is given in a way that differs from its approved licence. Clinical trial data published in the European Respiratory Journal in May 2025, after the events in this complaint, has shown tofacitinib has promise in managing refractory dermatomyositis and MDA5 with ILD. Our rheumatology adviser explains that some specialist centres, potentially at KCH where the specialist was based, may have pre-approval from NHS England to provide tofacitinib as part of specialist treatment or as part of clinical trials.

56. However, it remains it is not currently commissioned treatment for dermatomyositis, and the relevant guidance in place at the time of Mr K’s admission reported insufficient evidence for its use in this context. We do not consider it unreasonable or inappropriate, for the Trust to have not followed this one aspect of the KCH specialist’s advice. We can assure Mrs C all other aspects of the specialist’s advice were followed.

57. General Medical Council guidance says doctors should refer a patient to another practitioner when this serves the patient’s needs. It also says doctors must work collaboratively with colleagues, respecting their skills and contributions. Records show the teams at the Trust sought advice and guidance from external specialists, demonstrating a collaborative and respectful approach, and willingness to engage fully in providing Mr K with the best-informed care. This was in line with the above guidance.

58. The local, treating team ultimately had the responsibility for Mr K’s management. Our rheumatology adviser explains that tertiary or specialist level advice, especially when given remotely on a patient not directly under their care, carries that caveat: it is advice, obtained and given in good faith, and for the treating team to make treatment decisions, based upon the clinical picture at that moment in time.

59. A range of options may be given in some circumstances, as was the case here. However, even with some differing external input, our rheumatology adviser explains there was no significant deviation within either piece of advice to what would have been reasonably followed by most units around the country. The Trust opted to follow best-informed care, whilst retaining overall responsibility for Mr K, and we consider this appropriate.

Communicating the diagnosis 60. Mrs C complains the Trust never told her brother he might have dermatomyositis and failed to tell family until belated test results returned.

61. We find an entry in the records, completed on the evening of 5 January by the rheumatology consultant, noting they had been asked to see Mr K regarding his dermatomyositis. This attendance came after the dermatology attendance earlier that day when the diagnosis of dermatomyositis had first been made. This entry made by the rheumatologist is marked to confirm the diagnosis and plan was explained to Mr K.

62. Records contain an entry on 17 January noting it was explained to Mr K’s mother that he had an autoimmune condition where the muscles, skin and body tissue is attacked by antibodies. Our rheumatology adviser considers this a good lay explanation of diagnosis of dermatomyositis and its potential sub-types.

63. On 19 January, we find any entry noting the rheumatology consultant had explained the diagnosis to both Mr K and his mother.

64. On 24 January records note Mr K was spoken with about his CYC treatment and given two information leaflets about it, which included information about myositis. An entry on 25 January contains a detailed note of an explanation given to Mr K’s family, that the antibody blood results had returned confirming MDA5 dermatomyositis.

65. There is an entire section of General Medical Council guidance on communication, partnership and teamwork. It says doctors must give patients the information they want or need to know in a way they can understand.

66. We find sufficient documented evidence to show communication of Mr K’s clinical condition with both him and his family was appropriate, in line with this guidance. We recognise Mrs C’s concerns, yet the recorded evidence does not show us that the Trust failed in this regard.

Nutrition 67. Mrs C complains the Trust failed to provide her brother adequate nutrition throughout his admission. We hope to assure her we find evidence to show his nutritional management was appropriate.

68. Our rheumatology adviser explains that as dermatomyositis can lead to muscle weakness, concern should always be raised about the patient’s ability to swallow. Records note that Mr K developed a sore throat. Daily ward round entries show the appropriate consideration for his ability to swallow, as notes are made about this. Those notes record him having a painful swallow due to soreness, and nothing that would otherwise relate to a muscular involvement due to dermatomyositis.

69. The British Association for Parenteral and Enteral Nutrition (BAPEN) created the malnutrition universal screening tool (MUST), a five-step screening tool used to identify adults who are at risk of malnutrition. Records show MUSTs were completed appropriately in line with BAPEN guidance, and Mr K was initially found to be low risk. In line with BAPEN guidance, this did not require any additional action other than repeated MUST assessment in time.

70. The required repeated MUSTs were done. When a repeated MUST later identified Mr K had a higher risk, the Trust referred him for nutritional support from the dietetic team. This action was in line with BAPEN guidance.

71. The dietetic review on 19 January recorded that Mr K reported no difficulties or concerns with swallowing or food getting stuck in his throat. It notes that he had a yoghurt, a fuel breakfast drink and he had attend a whole burger the day before. It notes that he found it painful to swallow due to a sore throat but had no apparent physiological difficulties in swallowing food. We are satisfied the dietetic assessment and subsequent advice was robust and comprehensively considered the clinical circumstances.

72. Records also show the dietetic plan was followed. When in the ICU, a nasogastric (NG) tube was put in place. This is a thin, flexible tube, inserted through the nose and into the stomach for feeding. This action was in line with the dietetic management plan to aid Mr K’s nutritional intake.

73. When Mr K later removed the NG tube, a referral to the speech and language therapy (SALT) team was made. This was appropriate, in line with General Medical Council guidance, to refer a patient to another practitioner when this serves the patient’s needs. Notably, a MUST assessment completed two days before Mr K died did not show any apparent change in his weight from admission.

74. We know Mrs C is concerned to have seen a change in her brother’s eating and we understand why she is concerned about his nutritional management in hospital. We hope we can assure her, that without reported muscular swallowing problems and without weight loss, there was no clinical need for additional or alternative action to the steps already taken by the Trust. We are satisfied Mr K’s nutritional management was appropriate in line with guidance.

NEWS 75. Mrs C complains the Trust failed to respond appropriately or obtain the critical care team’s involvement when required, in response to NEWS observations. We hope to assure Mrs C that recorded evidence supports the explanations given in the Trust’s response, that it responded to Mr K’s NEWS appropriately, in line with guidance.

76. The National Early Warning Score or NEWS is a system where a score is allocated to six physiological parameters that are recorded in routine practice: respiration rate, oxygen saturation, systolic blood pressure, pulse rate, level of consciousness and temperature. The higher the score, the greater the indication of deterioration in adult patients.

77. NEWS guidance, alongside guidance from the National Institute of Health and Care Excellence (NICE), says a NEWS of 5 or 6 should trigger an urgent review by a clinician, usually a ward-based doctor. This review is recommended to obtain clinical input. When clinical review has recently taken place and the management plan is already in place and being enacted, our rheumatology adviser explains further clinical review is not necessarily always required. The guidance says a NEWS of 7 or more should trigger an urgent or emergency response, and this must include staff with critical care skills.

78. Records show the Trust complied with both NEWS and NICE guidance. The first time Mr K’s NEWS rose to 5 was on 14 January. Records show the nursing team escalated his care to a ward-based doctor, in line with NEWS and NICE guidance. When his NEWS was checked again two hours later, it had lowered to 2 and remained under 5 for the remainder of the day.

79. Mr K’s NEWS next rose to a 6 on the afternoon of 15 January. Again, records show the nursing team escalated his care to a ward-based doctor, in line with NEWS and NICE guidance. His NEWS was repeatedly checked that afternoon, with the appropriate escalation having occurred and the clinical management plan in place. His NEWS is noted to have lowered to a 3 by the evening, remaining under 5 for several days following.

80. The next raised NEWS was a 6 on the evening of 20 January. Records note there was no escalation made on this occasion as the clinical plan was already in place. When checked again 75 minutes later, Mr K’s NEWS had lowered to 3.

81. NEWS raised to 5 on the evening of 21 January, when again the nursing team escalated Mr K’s care to a ward-based doctor, in line with NEWS and NICE guidance. NEWS had lowered to 4 when next checked two and a half hours later and remained low for the following days.

82. Mr K’s NEWS raised to 7 on 23 January. Records show the medical registrar had reviewed him early that morning, determining the need to discuss with critical care. Renal and rheumatology clinicians and the ICU consultant were contacted and brought into the discussion to consider potential escalation, and Mr K was then transferred. This was the appropriate action in response to the raised NEWS on this occasion.

83. We hope to assure Mrs C that in line with NEWS and NICE guidance, we do not see any clinical indication to have required ICU involvement prior to the time it was obtained.

Medication in the ICU 84. Mrs C complains the Trust gave her brother paracetamol, morphine, gabapentin, melatonin, amitriptyline and remifentanil on 28 January which were inappropriately administered in combination, contraindicated for him, and given against his wishes to not be sedated.

85. We find evidence to show the above listed medications were all given to Mr K appropriately, in line with British National Formulary (BNF) guidance. Our critical care adviser confirms the dosage and timing of each administration of these medications was also in line with BNF recommendations.

86. Our critical care adviser explains there is no clinical concern about their administration in combination, that this would not have had any negative impact. We recognise Mrs C’s concern yet find no clinical indication any of these medications were contraindicated, either in combination or for Mr K specifically.

87. Whilst some of the medications listed can have a sedative effect, an unconscious or long-term state of sedation from these drugs is only seen when given in much larger doses than the Trust gave to Mr K.

88. At the point he was admitted into the ICU, sadly Mr K was very unwell. Records note he had some pain and at times was unsettled, agitated and distressed. Our critical care adviser explains the drugs with sedative effect were given in the context of promoting relaxation, in attempts to best manage his distress and agitation, and this was clinically reasonable. We provide the following further information, to address each medication in turn.

89. Paracetamol and morphine. These are analgesics (painkillers), that were appropriately given in attempts relieve Mr K’s symptoms of pain, agitation and distress. Oramorph (an opioid analgesic) was given when the NG tube was re-sited, to aid Mr K’s relaxation and reduce any discomfort he may have experienced from the procedure. Records also show it was given to aid his tolerance for NIV (non-invasive ventilation), which was helping his breathing. Our critical care adviser confirms these uses were reasonable. Morphine can have a sedative effect, however typically only at higher doses than given to Mr K.

90. Gabapentin. This was given in attempts to relieve Mr K’s nerve pain, agitation and distress. It was also given to aid Mr K’s tolerance for CPAP (continuous positive airway pressure, a machine that blows air through a mask into the nose or mouth), which was helping his breathing. Our critical care adviser confirms this was a reasonable use. Gabapentin can have a sedative effect at higher doses but again, records show lower doses were given to Mr K line with BNF recommendations.

91. Melatonin. Our critical care adviser explains this is a common medication given to patients in an ICU environment. It is given to boost to the body’s own production of this hormone, to promote natural sleep. It was appropriately given to Mr K for this reason and has no sedative effect.

92. Amitriptyline. Records show Mr K received just one dose of amitriptyline, which was given in attempts to relieve his neuropathic pain. Considering the single, low dose given, our critical care adviser confirms it would not have had any sedative effect.

93. Remifentanil. This is another type of opioid analgesic, which our critical care adviser explains was given to improve Mr K’s tolerance for CPAP. Records show it was started around 6am on 29 January, indicating this was given with the treating team’s intention of a further attempt at trying to reduce Mr K’s distressing symptoms, and a likely last attempt to achieve any possible improvement. Our critical care adviser explains it is a very short-acting sedative drug and analgesic, which has no lasting effects once the infusion is stopped, being cleared from the body within around 3-5 minutes.

94. We can assure Mrs C, there is no evidence to show Mr K experienced sedation from any of the above medications either independently, or in combination. We think it important however, to distinguish the difference between intubation and sedation.

95. We find records that do clearly document Mr K’s clearly expressed desire not to be intubated (when a tube is inserted into the windpipe for a machine to deliver oxygen directly into the body, when a person cannot breathe on their own). Yet, we do not find anything to suggest he expressed any wishes for or against medical sedation.

96. Records show the Trust provided NIV and CPAP in line with Mr K’s wishes to not be intubated yet to help with his breathing. In doing so, some of the above medications were appropriately given, to alleviate any pain and distress caused by these interventions. We can assure Mrs C we find nothing to show the Trust acted against her brother’s wishes in the prescribing and administering of the above listed medications, or that any of these were inappropriately provided.

In conclusion 97. We are grateful to Mrs C for bringing her complaint for our consideration. We hope to assure her, that we do not find any evidence of service failure in the complaints she has raised with us. We are satisfied from the recorded evidence, that the Trust’s actions were appropriate in line with the relevant and applicable guidance.

98. Sadly, the evidence indicates that even on admission, Mr K was very unwell. Our rheumatology adviser explains Mr K’s prognosis was unfortunately poor from his arrival at the Trust, despite evidence showing the appropriate diagnosis was made and the appropriate treatment was given.

99. We very much hope our decision can provide Mrs C assurance about the care her brother received, and that our report has fully explained the reasons for this.

1. We have carefully considered Mrs C’s complaint, that failings in her brother’s care during his admission in January 2024 led to his very sad death in hospital.

2. We do not see any evidence of failings in the complaints Mrs C has raised with us. We have decided to not uphold this complaint.

3. We recognise the considerable distress Mrs C has experienced due to her brother’s sad death in these circumstances. We hope our report provides her assurance in the care her brother received and fully explains our findings.