the Trust did not provide him with a diagnosis of autoimmune encephalitis
15. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
16. Mr R believes that if a Trust paediatric neurologist had treated him, he would have been provided with the correct diagnosis during his admission. Mr R believes he should have been given a diagnosis of autoimmune encephalitis. After the Trust discharged from his admission, he had private consultations and was given a diagnosis of autoimmune encephalitis.
17. In its response, the Trust said it was unable to provide a definitive diagnosis. It said after several internal multi-consultant discussions, and consulting with external specialists it had not found convincing evidence to support a diagnosis of autoimmune encephalitis.
18. The Trust has recorded in Mr R’s medical records he had previously experienced long covid. It has also recorded he had sleep disruption for two weeks before he presented in hospital. Additionally, the Trust recorded Mr R has previously smoked cannabis, although this had not been for some time. It recorded that in 2020, he had an episode where he thought he was a ‘superhero’, which appeared to resolve itself spontaneously.
19. GMC, Good medical practice says doctors must adequately assess the patient’s symptoms, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values and where necessary examine the patient. Doctors should promptly provide or arrange suitable advice, investigations or treatment where necessary. They should refer a patient to another practitioner when this serves the patient’s needs.
20. Mr R’s medical records show the Trust completed an electroencephalogram (EEG) on 20 December 2022. This is a test that records the electrical activity of the brain. The Trust also completed a magnetic resonance imaging (MRI) scan, which uses magnetic fields and radio waves to create details images of internal body structures. The Trust completed two MRI scans of Mr R’s head, on 19 December and again on 8 January 2023.
21. The Trust completed a lumbar puncture (LP), where a needle is inserted into the lower back to collect cerebrospinal fluid (CSF) for diagnostic purposes. The Trust completed the lumbar puncture on 16 December 2022, when Mr R initially presented in the Emergency department (ED). The LP also included autoantibody screening. Our adviser explained to us that the Trust determined these tests to be negative or normal. Although the Trust determined Mr R’s tests were negative or normal, it did treat him for a presumed diagnosis of autoimmune encephalitis and treated him with a course of intravenous (IV) methylprednisolone over a five day period. Methylprednisolone is a corticosteroid which is used to decrease inflammation and slow down an overactive immune system.
22. We can see from Mr R’s medical records that the Trust held many discussions with staff and Mr R’s family about a possible diagnosis. The Trust also spoke to a consultant neurologist and a consultant paediatric neurologist in Birmingham for further specialist input about a diagnosis for Mr R.
23. All the clinicians involved in Mr R’s care identified that if he did have a diagnosis of autoimmune encephalitis, it was an atypical (unusual) presentation, with no positive investigations. For this reason, the Trust decided it could not provide Mr R with a definitive (final) diagnosis of autoimmune encephalitis.
24. We spoke to our adviser to understand the criteria that needed to be met, in order to diagnose autoimmune encephalitis. They told us there is a difference in the criteria between a diagnosis for adults and for children. Our adviser referred us to: • The Lancet neurology, ‘Diagnostic criteria for autoimmune encephalitis: utility and pitfalls for antibody negative disease’, 2023,22: • The Lancet neurology, ‘A clinical approach to diagnosis of autoimmune encephalitis’, 2016,15 • Neurology, Neuroimmunology and Neuroinflammation, ‘Paediatric autoimmune encephalitis’, 2020,7 • Neurology, Neuroimmunology and Neuroinflammation, ‘Clinical approach to the diagnosis of autoimmune encephalitis in the paediatric patient’, 2020, 7.
25. These journal articles provide details of the diagnostic criteria for autoimmune encephalitis in adults and children.
26. Our adviser told us the diagnostic criteria required a rapid progression of psychiatric symptoms and exclusion of well-defined syndromes of autoimmune encephalitis (specific antibody target and clinical symptoms) and with the absence of autoantibodies, in adults two of, and in children, one of the following criteria should be met: • MRI abnormalities suggesting autoimmune encephalitis • CSF pleocytosis (an increased number of white blood cells), CSF specific oligoclonal bands (proteins found in CSF and can be a marker for multiple sclerosis), or elevated CSF IgG index (a higher than normal level of Immunoglobin G. Immunoglobulin G suggests a inflammatory or autoimmune disease in the central nervous system) • Brain biopsy showing inflammatory infiltrates (inflammatory cells).
27. Our adviser explained to us that after reviewing Mr R’s medical records, including all the test results, and the diagnostic conditions for autoimmune encephalitis, they believed he did not meet the criteria for this diagnosis. They further said the negative results from investigation mean a definitive diagnosis of autoimmune encephalitis could not be made, however he received appropriate acute treatment.
28. Having reviewed all the information provided to us, we can see the Trust completed diagnostic tests to try and understand Mr R’s condition, this was in line with GMC guidance. We have seen evidence to show the tests did not direct the clinician to deliver a diagnosis of autoimmune encephalitis. In the circumstances this was in line with the diagnostic criteria our adviser outlined through the relevant journal articles. We recognise Mr R has told us he has since received a private diagnosis of autoimmune encephalitis. We are unable to comment on this.
29. Based on what we have seen, we believe the Trust was correct in not providing Mr R with a diagnosis of autoimmune encephalitis. This was in line with the diagnostic criteria and GMC good medical practice.
the Trust incorrectly stopped his IV steroid treatment after one dose
30. Mr R told us the Trust withdrew his intravenous (IV) steroid treatment, after just one dose. He told us he believed that for it to be effective, he should have had several doses.
31. The Trust said it updated the management plan appropriately in line with changes in Mr R’s clinical situation, the results of new investigations and external specialist opinions that it received.
32. It also said there was a disagreement between Mr R family and the clinicians about Mr R’s diagnosis and the management of his condition. The Trust have documented the concerns raised by Mr R’s family at this time, in his medical records. Mr R’s family have also expressed their concerns to us, during our communication with them.
33. Mr R’s medical records show the Trust administered two courses of IV methylprednisolone. It administered the first five day course following Mr R’s initial admission in December and a further IV course was given in mid-January. Following this, the Trust started Mr R on high dose oral steroids.
34. The Trust sought advice on Mr R’s treatment from a consultant paediatric neurologist in Birmingham. The specialist said that although the diagnosis of autoimmune encephalitis was unlikely, a further course of IV steroids could be given to Mr R.
35. We can see from Mr R’s medical records that the Trust reviewed this information as part of a multidisciplinary team (MDT) discussion into his care. The MDT decided that a further course of IV steroids were not in Mr R’s best interests as the Trust had already kept him on a high dose of oral steroids.
36. GMC Good medical practice says in providing clinical care doctors must prescribe drugs or treatment, only when they have adequate knowledge of the patient’s health and are satisfied that the drugs or treatment serve the patient’s needs. It further says when providing clinical care doctors must provide effective treatments based on the best available evidence and consult colleagues where appropriate.
37. From what we have seen, Trust staff consulted with a specialist in Birmingham to help them understand how best to provide clinical care to Mr R. Following the advice provided, the Trust MDT decided that further IV steroids would not best serve Mr R’s needs. We are satisfied the Trust followed GMC guidance when treating Mr R and we can see it did not stop the IV steroids after one dose.
the Trust provided inconsistent care
38. Mr R told us there was a different consultant looking after him every week. He believes this meant his care was inconsistent and therefore had a negative impact on his treatment.
39. The Trust said it uses a ‘consultant of the week’ model meaning Mr R was under the care of several different consultants. It further said this is normal practice and not an uncommon model. The Trust acknowledged there was a disagreement between Mr R’s family and the Trust in relation to his diagnosis and the action the Trust was taking, in terms of treatment. It further acknowledged the clinical team supporting Mr R requested external specialist opinions on his presentation. The Trust also requested the options of psychiatry and paediatric neurology.
40. As previously stated above, the GMC Good medical practice says that doctors must adequately assess a patient’s condition in order to provide a good standard of care. It also says doctors should consult colleagues where appropriate. Clinical records should include relevant clinical findings, the decisions made and actions agreed and any drugs prescribed or other investigation or treatment.
41. Our adviser told us the consultant of the week model is standard practice and in general works well. They explained to us that the model has an advantage in that each week a ‘fresh’ pair of eyes reviews any long standing cases, providing a further opinion.
42. We have seen evidence to show the Trust have recorded clear documentation in Mr R’s medical records detailing different discussions with the family with different consultants. There is evidence of discussion of Mr R’s care at neurology MDTs with a consistent message being given to the family.
43. From what we have seen, we are satisfied the Trust acted in line with GMC guidance. We believe the Trust provided care consistent with the guidance and did all it could to support Mr R to ensure his care was consistent.
44. We recognise how difficult it can be to make a complaint. We thank Mr R and his family for bringing their concerns to us.