Buckinghamshire Healthcare NHS Trust

10. Mr P complains about aspects of care and treatment he received at Buckinghamshire Healthcare NHS Trust (the Trust). He complains about the following: • the consultant conducted incorrect tests for his symptoms relating to long COVID and as such misdiagnosed him • his symptoms and supporting studies from leading hospitals were ignored • the Trust failed to reconsider the functional neurological disorder (FND) diagnosis despite long COVID’s neurological impact • he felt dismissed by the involved practitioner, and may have biased the diagnosis • he was discharged, and no other treatments have been offered in line with national guidance.

11. Mr P says he has been misdiagnosed because the consultant did not follow the correct process and request the right tests for his symptoms. The handling of Mr P’s medical condition has severely impacted his health and well-being.

12. He reports his health has significantly deteriorated, leaving him unable to function as he did previously and hindering his ability to return to work. He expresses frustration and exhaustion from having to advocate for his care at every stage, which he is no longer able to sustain.

13. The lack of a clear treatment path despite existing NICE guidelines and the offered Cognitive Behavioural Therapy (CBT), which he had unsuccessfully tried before, has further exacerbated his distress.

14. By bringing his complaint to us, Mr P wants the Trust to be held accountable, wants an apology, and acknowledgement of guidelines and studies supporting his case.​

15. Mr P has a history of chronic fatigue, fibromyalgia (a chronic disorder that causes widespread pain throughout the body) and chronic pain. He also has a history of significant weight loss, severe fatigue, and increasing weakness.

16. In January 2023, Mr P contracted COVID-19. COVID-19 is a highly infection respiratory (breathing) disease. In January 2020, the disease spread worldwide, resulting in the COVID-19 pandemic that lasted until May 2023.

17. The long-term effects of COVID-19 are often referred to interchangeably as long COVID and post COVID syndrome. Long COVID can affect people of all ages, with the most common symptoms including, extreme tiredness (fatigue), feeling short of breath, muscle aches, difficulty concentrating and joint pain.

18. Mr P attended an appointment at the Neurophysiology department at the Trust at the start of October 2024.

19. The consultant requested neurophysiology studies to look for alterations in Mr P’s muscle tissue associated with myopathies (diseases that affect skeletal muscles which are responsible for voluntary movements), which can be inherited or acquired, leading to muscle weakness and dysfunction. The consultant also wanted to rule out chronic muscle inflammation through these studies.

20. The consultant requested an electromyography (EMG – a procedure that evaluates the electrical activity of muscles) as well as further blood tests. During this appointment the consultant explained to Mr P, further tests may include a lumbar puncture and a muscle biopsy.

21. Mr P was diagnosed at this appointment with functional neurological disease (FND). FND is described as a condition where the brain’s functioning is disrupted, causing neurological symptoms without structural damage. Neurological disorders are conditions that affect the brain, spinal cord, and nerves, impacting movement, sensation, cognition, and overall nervous system function.

22. The consultant suggested cognitive behavioural therapy (CBT) for this. This is a type of a talking therapy where a therapist helps the individual change how they think and act.

23. Mr P informed the consultant he had tried CBT in the past, and he had no improvement.

24. Mr P also asked the consultant during this appointment why his brain MRI was a 1.5 T as opposed to 5T, as he believed this was required to look at the cerebral blood flow (the rate at which blood is supplied to the brain).

25. Magnetic resonance imaging (MRI) is a non-invasive medical imaging technique that uses strong magnetic fields and radio waves to create detailed images of the organs and tissues inside the body.

26. Most MRI scanners used in healthcare settings in the UK are 1.5T or 3T. The ‘T’ refers to the unit of magnetic field strength known as the Tesla. MRI scanners with a higher Tesla have a stronger magnet within the bore of the machine.

27. The consultant explained 1.5T is the standard protocol heath professionals use for neurological conditions.

28. The consultant agreed to request an MR Angiogram scan. An Magnetic Resonance Angiography (MRA) is a non-invasive imaging technique that uses magnetic resonance imaging to visualize blood vessels and assess blood flow, helping diagnose various vascular conditions.

29. The consultant informed Mr P an MRA is unlikely to show any significant abnormalities apart from high blood pressure changes.

30. The consultant did not arrange a further appointment, and asked Mr P’s GP to refer to the department if required.

31. The results of Mr P’s MRI scan, nerve conduction studies, and EMG came back normal, and no further investigations were required.

32. Mr P had a consultation with a neurologist at a different Trust towards the end of October 2025.

33. He was diagnosed ‘chronic fatigue’ which likely secondary to post viral syndrome. The consultant discussed medications such as antidepressants, diet, and gentle exercise to assist his symptoms. The consultant also requested additional blood tests.

Tests

37. Mr P complains the consultant conducted incorrect for his symptoms relating to long COVID-19 and as such misdiagnosed him.

38. In his complaint, Mr P explains the equipment used for the brain scan is not strong enough to pick up the cerebral blood flow differences which individuals who have long COVID-19. He states a 5T MRI scan was required.

39. He also said the consultant failed to conduct additional tests such as mitochondria or any genetic testing.

40. Mitochondrial tests are essential for diagnosing mitochondrial diseases and assessing mitochondrial function. Genetic tests analyse an individual’s DNA to identify changes.

Mitochondria are cell structures that produce ATP, the main energy source for cells. DNA carries genetic instructions vital for an organism's growth, development, and reproduction.

41. The Trust explains in its response of June 2025, 5T scans are not available on the NHS, and as such an MRI scan was requested for reassurance.

42. It also mentions as COVID-19 is considered as neuro-topic, which means the virus does not affect mitochondria or DNA.

43. In the Trust’s response to Mr P’s outstanding concerns, it explains all appropriate tests such as an MRI scan, nerve conduction studies, and EMG (a test that measure electrical activity in nerves and muscles) were performed.

44. We considered whether the investigations initiated by the consultant were appropriate considering Mr P’s symptoms.

45. The records show Mr P was seen at the start of October 2024, and he described symptoms of headache, vomiting and diarrhoea commencing in January 2023. In June 2024, Mr P reports a sensation of his brain stopping acutely and then of the feeling of his brain exploding.

46.  Since then, Mr P had experienced bodily weakness, exacerbated by light and sound.  There was a history of backache diagnosed as fibromyalgia. Fibromyalgia is a chronic condition characterised by widespread pain, fatigue, and other symptoms.

47. Mr P had been previously assessed by the endocrine team and found to have normal pituitary hormones. Endocrinology is a clinical speciality in the hospital which deals with glands and hormones. Hormones are chemicals which the body makes in the glands. Hormones act like messengers from one organ to another. The pituitary gland is an endocrine gland located at the base of the brain.

48. A cardiological (heart) assessment in July 2024 was normal.  Mr P also complained of tinnitus (perception of sound in the ears or head without an external source), dysphagia (difficulty swallowing) and had been under the pain clinic.

49. The examination found mild muscle wasting around the quadriceps (large muscle group at the front of the thigh) and small muscles of the hands. During the examination, Mr P was wearing sunglasses which he could not remove as he was sensitive to light.

50. There was weakness of the legs with normal reflexes, and abnormal sensation in the left C5 (mid-cervical region of the spine) distribution and right L4/L5 (vertebrae and crucial components of the lumbar spine) distribution.

51. The evidence shows the neurologist requested nerve conduction studies, EMG and some blood tests, but explained the history was in keeping with a functional neurological disorder (FND).  The consultant told Mr P it was unlikely a COVID-19 infection had led to the symptoms.

52. Mr P was keen to have a 5T MRI to look at blood flow in his brain. The neurologist explained to him this was not standard in the NHS but agreed to request an MR angiogram (MRA) to assess blood flow 53. General Medical Council (GMC) guidelines in ‘good medical practice’ requires practitioners providing ‘clinical care must:

• adequately assess a patient’s condition(s), taking account of their history, including • symptoms • relevant psychological, spiritual, social, economic, and cultural factors • the patient’s views, needs, and values

• carry out a physical examination where necessary • promptly provide (or arrange) suitable advice, investigation or treatment where necessary.’

54. Our adviser says Mr P’s history and examination were undertaken, and the investigations ordered were reasonable, apart from the MRA for which there was no obvious indication.

55. Our adviser says this investigation is usually undertaken to look for the possibility of structural abnormalities of the blood vessels of the brain or provide evidence for cerebral vasculitis, neither of which were likely based on Mr P’s medical history.

56. Also, our adviser states Mr P was insistent on having investigations, and in the circumstances concludes the balance of risk and benefit of requesting the examination was reasonable.

57. NICE guidance on ‘COVID-19 rapid guideline: managing the long-term effects of COVID-19’ suggests tests and investigations should be tailored to individual’s signs and symptoms. It also says patients should be referred to secondary care only if there is a possibility of acute or life-threatening complications. No specific tests are recommended.

58. Our adviser comments Mr P did not have the signs and symptoms as recognised by the above guidance.

59. As such, the investigations undertaken by the consultant were conducted appropriately and in line with GMC guidance on ‘. We can also say Mr P’s investigations were guided by his symptoms. As we have established, investigations specifically aimed at managing long-term effects of COVID-19 were not indicated or applicable to Mr P’s clinical presentation. As such, we do not find any indications of failings when the consultant conducted the investigations for Mr P’s symptoms.

60. We acknowledge Mr P feels appropriate investigations were not carried out in relation to his concerns. We also recognise experiences of ongoing or unexplained symptoms can understandably lead to feelings of uncertainty about the adequacy of the assessments.

61. We next considered whether Mr P’s symptoms required additional tests such as mitochondria or genetic testing.

62. Our adviser states there no nationally endorsed guidelines which suggest a patient with this range of symptoms requires mitochondrial or genetic testing.  Our adviser further explains Mr P’s symptoms were not suggestive of any recognised mitochondrial or genetic disorder. As such, we cannot find anything went wrong here.

63. We also considered whether a 5T scan was required in Mr P’s case.

64. Our adviser says 5T MRI scanners are not generally available in the UK. The highest resolution available in clinical practice in the UK is 3T.

65. This is supported by The Royal College of Radiologists in ‘Magnetic Resonance Imaging (MRI) Equipment, Operations and Planning in the NHS’, which says ‘the two main field strengths in clinical use in the NHS are 1.5T and 3.0T’.

66. It is also noted a separate Trust; the Royal National Orthopaedic Hospital NHS Trust published a news article of ‘3T MRI: taking imaging to a new level’. The article shows only recently it introduced a 3T MRI scanner as part of its development, which shows the ongoing transition from 1.5T to 3T technology within routine clinical practice across NHS Trusts.

67. The gradual introduction of 3T MRI scanners across NHS Trusts shows these scanners represent the highest level of MRI technology in clinical settings in the UK, which is routinely used in standard clinical practice, with higher-strength scanners not being part of usual NHS services.

68. We recognise Mr P felt a 5T scan was required to investigate the symptoms of long COVID-19. Unfortunately, this was not clinically available on the NHS. As such, we cannot attribute this to an indication of a failing.

69. In terms of Mr P’s diagnosis of FND, our adviser says this diagnosis was appropriate and the results of the investigations were helpful in ruling out significant neurological disease. As such, reinforcing the diagnosis of FND.

70. We recognise Mr P feels strongly his condition may have been misdiagnosed and this can be a distressing experience especially when he has been experiencing symptoms for a long time. We acknowledge how important his concerns are for him and how real his symptoms feel to him. At the same time, the results of the investigations carried out did not indicate any other health condition. While we recognise this may not align with his expectations, our consideration is based on the available clinical evidence, and input from our specialist clinical adviser.

Symptoms and supporting studies

71. Mr P complains his symptoms and supporting studies from leading hospitals were ignored.

72. Mr P states the Trust incorrectly described COVID-19 as neuro-topic, and challenges it with evidence showing neurological symptoms which arise from systemic inflammation and immune-mediated responses.

73. He provided a long list of studies and feels they were ignored by the Trust. He requested these studies to be reviewed as part of a reassessment of his diagnosis.

74. These studies included the following:

• Nature Reviews, ‘Long COVID: A Comprehensive Review of Persistent Symptoms and Their Systemic Impact,’ 2023 • Nature Communications, ‘Blood-Brain Barrier Disruption and Neuroinflammation • in Long COVID Patients with Cognitive Impairment’, 2025 • Frontiers in Cellular Neuroscience, ‘Inflammatory Cytokines and Neurological Dysfunction in Long COVID’, 2025 • Nature Medicine, ‘Neurological Complications Following COVID-19: A One-Year Follow-Up Study’, 2022 • Vascular Dysfunction and Neuroinflammation in Long • ScienceDirect, ‘COVID: Self-Sustaining Feedback Loops’, 2024 • PMC, ‘Persistent Neurological Symptoms in COVID-19 Survivors: A Longitudinal Cohort Study’, PMC, 2023

75. The Trust reiterated in its response of July 2025, all the necessary tests and examinations were conducted to diagnose Mr P with FND.

76. We considered whether the Trust should have considered Mr P’s supporting information to reassess his condition.

77. As we have established previously, Mr P’s diagnosis of FND was based on his clinical presentation and the normal results of his investigations. Our adviser comments this was appropriate and in line with NICE guidance on ‘COVID-19 rapid guideline: managing the long-term effects of COVID-19’.

78. Our adviser says the supporting studies provide no information to help diagnosis or management and instead describe findings in cohorts of patients with functional symptoms following a COVID-19 infection.

79. Our adviser also explains while these papers are interesting, the findings are not of clinical importance and have not been independently verified.

80. NICE guideline on ‘COVID-19 rapid guideline: managing the long-term effects of COVID-19’ covers assessment of patients with post-COVID 19 symptoms and it emphasises the diagnosis is clinical and does not rely upon a definitive investigation. The guidance also recommends investigations should be guided by the individual’s presentation and used to exclude alternative diagnoses where appropriate.

81. In terms of the quoted studies by Mr P, our adviser states these describe patients labelled as having long COVID clinically and are research studies. Our adviser explains post COVID syndrome is a contentious diagnosis as there is no well-defined clinical syndrome of long COVID characterised by reproducible, specific physical, biochemical or metabolic abnormalities.

82. As described in British Medical Journal (BMJ) Best Practice literature, long COVID is ‘a heterogenous condition that encompasses a wide spectrum of individuals with new or persistent symptoms following acute [COVID-19]’, reflecting variability in symptom presentation. Although this journal post dates the events complained about, we feel it demonstrates the ongoing difficulty in diagnosing long COVID.

83. Our adviser explains instead the symptoms are broadly those of Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS – a long-term condition that can affect different parts of the body) and FND.

84. Our adviser further adds reports of associated biological abnormalities have proved non-specific, unrepeatable or of dubious validity. In that long COVID, FND and CFS/ME are all functional syndromes with considerable overlap in the branch of symptoms individuals’ experience, with common underlying causes and similar management strategies.

85. This is recognised in Frontiers in Medicine medical journal articles such as ‘ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature’ and ‘Case Report: Overlap Between Long COVID and Functional Neurological Disorders’. These journals support the difficulty in diagnosing long COVID.

86. Our adviser states the label of Mr P’s symptoms was of little clinical significance as the management of his symptoms would have been the same, regardless of the name.

87. What we can say is while long COVID is a defined condition, there is currently no single diagnostic test to diagnose this condition. In line with NICE guidance on ‘COVID-19 rapid guideline: managing the long-term effects of COVID-19’, the diagnosis is made on symptoms, clinical assessment, and a history of confirmed or likely COVID-19 infection.

88. Having COVID-19 alone is not enough to explain ongoing symptoms, and as our adviser explains especially given how common COVID-19 infection has been in the general population. In this case, Mr P’s symptoms have been clinically assessed and diagnosed as FND.

89. While the studies have been acknowledged, we can say general research evidence does not override Mr P’s clinical presentation assessed by a specialist. As such, we cannot find anything went wrong here.

FND diagnosis

90. Mr P complains the Trust failed to reconsider the functional neurological disorder (FND) diagnosis despite long COVID’s neurological impact. He states the Trust’s final response upheld the FND diagnosis, despite evidence of long COVID’s neurological impact.

91. Mr P also informed us he had an appointment with a neurology consultant at a different Trust who gave him a different diagnosis, which recognises he has ‘chronic fatigue likely secondary to post viral syndrome’.

92. The Trust states in its response FND is diagnosed where a patient is experiencing symptoms, with no neurological examination findings. It said FND was diagnosed as all the tests conducted, such as an MRI scan, nerve conduction studies, and an EMG were all normal.

93. It also states the neurology department are happy to book Mr P a follow up appointment with a different neurology consultant to discuss the diagnosis in more detail.

94. As we have identified, Mr P’s assessment by the neurologist was appropriate and our adviser states the neurologist also considered the possibility of physical or emotionally generated neurological symptoms.

95. Our adviser further explains there was no evidence Mr P had a disorder characterised by a pathological response to COVID-19, or such a disorder would require specific investigation or treatment.

96. NHS Inform in ‘Functional neurological disorder’ states when diagnosing FND, the healthcare provider carries out an assessment to consider if there are typical clinical features of FND, and they may still choose to test for other diseases and conditions before diagnosing FND.

97. In Mr P’s case, the evidence shows the neurologist requested additional tests before making a diagnosis. Our adviser says the assessment conducted by the neurologist was appropriate. We do not find any indications of failings in this complaint aspect.

98. We acknowledge Mr P feels strongly his symptoms are related to long COVID and receiving a diagnosis of FND instead was difficult to accept, especially when he was given a diagnosis of chronic fatigue likely secondary to post viral syndrome by a different Trust. We recognise Mr P’s concerns with sensitivity. At the same time, the current diagnosis was made following Mr P’s investigations and assessment of his symptoms. We do not wish to diminish Mr P’s concerns by our decision.

Dismissive attitude and bias 99. Mr P told us he felt dismissed by the consultant and may have biased the diagnosis. He says upon entering, he was examined and within 10 minutes the consultant decided he did not have long COVID-19, and the reason being the consultant did not believe in it.

100. Mr P also told us in his records, the consultant noted he refused to take his glasses off and failed to acknowledge he is extremely sensitive to light. He also said the consultant noted he was giggling during examination. Mr P said this was a result of him being anxious and is a coping mechanism.

101. In terms of the duration of the appointment, the Trust says the consultant confirmed the appointment took nearly 45 minutes, during which a detailed medical history and neurological examination took place.

102. The Trust also says the consultant informed Mr P more research is needed and in their professional opinion symptoms were unlikely due to long COVID-19.

103. In its response of July 2025, the Trust states Mr P’s opinion of the consultant disregarded a diagnosis of long COVID-19 is due to their own beliefs in not the reason why he was diagnosed with FND. It states this was diagnosed after tests were conducted.

104. The records show in October 2024, ‘Mr P was giggling during examination and refuses to remove sunglasses for eye exam’. In the dictated letter typed, the consultant noted they did not examine Mr P’s eyes fully as he was unable to remove his sunglasses and acknowledged ‘he is very sensitive to light’.

105. Our adviser finds this is a common finding in patients with FND. This is noted by NHS Inform in ‘Functional neurological disorder’ which says, ‘visual symptoms can be part of FND’ and individuals may experience changes to their vision such as ‘photophobia (sensitivity to light)’. We acknowledge this guidance post-dates the events and we have used this only as reference to better understand the symptoms of FND.

106. GMC guidelines ‘Good medical practice’ says in providing clinical care health practitioners ‘must:

• adequately assess a patient’s condition(s), taking account of their history, including

• symptoms • relevant psychological, spiritual, social, economic, and cultural factors • the patient’s views, needs, and values

• carry out a physical examination where necessary • promptly provide (or arrange) suitable advice, investigation or treatment where necessary.’

107. The clinical evidence shows the consultant considered Mr P’s views, and the symptoms he was experiencing. The consultant also conducted a physical examination, and requested further investigations.

108. Our adviser states Mr P’s examination was appropriate and professional and in line with GMC guidelines above.

109. It is clear Mr P felt let down by his contact with the consultant. While we do not dispute Mr P’s recollection of events, we cannot find any indication of anything went wrong in this complaint aspect.

Discharged with no follow up

110. Mr P complains he was discharged inappropriately with no treatment offered in line with NICE guidance but has not specified which guidance. He states the guidance states his symptoms required an offering of physiotherapy, occupational therapy, and psychotherapy.

111. He also says in his complaint to the Trust, regular reviews and patient satisfaction principles have not been offered.

112. Mr P says he was offered CBT as a treatment which he found unhelpful and feels this approach does not address the physical and neurological nature of his symptoms.

113. The Trust explains the consultant offered Mr P CBT, and he informed the consultant he did not find it useful.

114. The Trust also signposted Mr P to a website on how to manage and improve symptoms associated to FND.

115. Our adviser comments while Mr P would have benefitted with a referral in the community service for patients with long COVID syndrome or CFS/ME for management, this provision would be variable depending on regional commissioning and would most likely be arranged by a GP.

116. NHS England states in ‘Post-COVID syndrome (long COVID)’ says the NHS has established post COVID services across England for both adults and young people. It also goes on to say, ‘People who think they may be experiencing persistent or long-term effects of COVID-19 are advised to contact their GP, who will determine the appropriate course of action.’

117. We recognise no further neurological follow-up was planned after Mr P was discharged. In line with NHS England in ‘Post-COVID syndrome (long COVID) ongoing monitoring for long COVID is typically managed by primary care (the GP), who remains responsible for reviewing symptoms, and coordinating referrals onwards where clinically appropriate. As such, we do not find any indications of failing in this matter.

118. We acknowledge Mr P’s concerns regarding no follow-up after his discharge, and this understandably felt a lack of ongoing specialist input for him.

119. Complaints give us valuable insight into the organisations we investigate, and we recognise this has been a very challenging and frustrating process for Mr P. We would like to thank Mr P for sharing his experience with us.

120.  We are sorry for the distress Mr P experienced, and we hope our independent investigation brings a closure to the matter for Mr P.

1. We have carefully considered Mr P’s complaint about Buckinghamshire Healthcare NHS Trust (the Trust). We thank Mr P for his patience during this time.

2. We understand why Mr P feels so strong about his complaint and we are sorry to hear about the concerns Mr P raised about the way his investigations were conducted, and the handling of his ongoing symptoms.

3. We understand experiencing symptoms over a long time can be uncomfortable and how upsetting it can be when care does not align with expectations, particularly when Mr P was feeling unwell with ongoing symptoms.

4. We would like to thank Mr P for bringing his complaint to us for a thorough review.

5. We found there were no indications of failings in the way Mr P’s investigations and tests were conducted.

6. We also acknowledge the studies presented by Mr P and we found general research evidence does not override Mr P’s clinical presentation assessed by a specialist. We cannot say anything went wrong here.

7. We found the neurologist conducted the appropriate investigations before diagnosing Mr P with Functional Neurological Disorder (FND). We also considered Mr P’s examination was conducted appropriately.

8. While Mr P felt he was not adequately discharged with onward referrals, this must generally come from a GP.

9. We understand our decision will be disappointing for Mr P. We would like to reassure Mr P we have looked at his complaint independently and impartially with advice sought from an experienced clinician.