Treatment of the seizures
23. 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.
24. Mr L says he suffered a seizure on 10 June 2023 and he was taken to hospital by ambulance. He was discharged on 16 June 2023 and had outpatient appointments at the Trust. He suffered a second seizure on 21 June 2023 and was readmitted to hospital. He suffered a third seizure on 28 June 2023.
25. Mr L says he does not recall much about his time at the hospital between 10 June 2023 and 21 July 2023. He is aware he was delirious. He says the Trust was wrong to diagnose and treat the seizures as drug related.
26. We asked our adviser about Mr L’s two admissions. Our adviser explained from the hospital records Mr L had a lot of tests and investigations into the high blood pressure, seizures and chronic kidney disease he was experiencing. These tests and investigations were to both exclude possible diagnoses and narrow down what the root cause of the medical issues.
27. Our adviser told us the NICE guidance on epilepsy is relevant. We understand this is the case because epilepsy is a common cause of seizures. An NHS organisation should investigate the seizures in line with the NICE epilepsy guidance.
28. That guidance says • ‘Refer patients urgently (within 2 weeks) for an assessment after a first suspected seizure • give the patient and family information about how to recognise a further seizure and any changes to make to reduce the risk of a further seizure • ‘take a full history and carry out a physical examination • evaluate people with a 12 lead ECG to help identify cardiac related conditions which could mimic an epileptic seizure • offer brain neuroimaging tests if an underlying structural cause is suspected • if a person’s history and examination suggests an epileptic seizure and a diagnosis of epilepsy is suspected, consider a routine EEG. Perform an EEG as soon as possible after a first seizure (ideally within 72 hours).
• Offer an MRI to patients diagnosed with epilepsy unless they have idiopathic generalised epilepsy or self limited epilepsy with centrotemporal spikes. The MRI should be carried out within 6 weeks of the referral and following regionally agreed epilepsy MRI protocols. If an MRI is contraindicated, perform a CT scan.’
29. We can see from the hospital records Mr L was admitted to the Trust on 10 June 2023 following a seizure. A history was taken at the scene as well as from family when he was admitted. The plan was to have a CT scan of the head.
30. This scan identified no acute pathology or injury (a disease or issue that starts suddenly and is short lived) as per the discharge summary dated 16 June 2023. A referral to neurology was made on 12 June 2023.
31. Upon readmission to the Trust on 21 June 2023, a further CT scan of the head was performed and a neurology referral was made. The advice from neurology was to perform an MRI and an EEG, a urine toxicology screen and a detailed drug and alcohol history taken. A lumbar puncture was also undertaken.
32. A further neurological review was undertaken on 27 June 2023. There was no radiological evidence to support a diagnosis of PRES (posterior reversible encephalopathy syndrome) a cause of neurological abnormality associated with high blood pressure. Further tests were requested.
33. Mr L was discharged from the stay at the Trust on 21 July 2023. We understand he remained under the neurological team for investigations.
34. From the evidence we have seen, the investigations into the seizures were in line with the guidance. This is because a neurology opinion was sought on a number of occasions during Mr L’s two stays at the Trust, a full history was taken and physical examinations were conducted, brain neuroimaging tests were performed. He also was given anti seizure medication.
35. We appreciate this situation and the stays at the Trust must have been distressing for Mr L and his family. We have not seen any indication anything went wrong in the Trust’s treatment and management of his seizures. The evidence indicates the Trust investigated his seizures in line with the guidance and did not make assumptions they were drug related. As such we will not consider this part of his complaint any further.
Disclosures
36. Mr L explains he and his family spoke with the consultant overseeing his care on 17 July 2023. They believe the consultant had made assumptions about Mr L and his lifestyle, with information gained from Mr L whilst he was very unwell and delirious.
37. 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.
38. We have reviewed the information provided to us by Mr L and the Trust on this matter, as well as the NHS Complaints Standards. The complaint about how the Trust considered Mr L’s disclosure about drug use goes across the care itself So we have considered a number of different standards that are relevant to what should have happened.
39. Mr L says he was labelled a regular drug addict and his three seizures were put down to him taking drugs just before them. However, Mr L says this is untrue because • he was unable to take any drugs whilst on the ward and therefore the third seizure could not have been drug induced • between the discharge of the first stay and admission after the second seizure he had been under the 24 hour care of his mother and did not access to drugs • two drug screens completed after the first and second seizure had shown no drugs in his system
40. We noted an entry in the records dated 15 July 2023. This record is of a ward round. It says Mr L was ‘alert and engaging in conversation. Mr L reports feeling much improved. He is much less muddled – reports still having vivid dreams but is aware these have been dreams. Discussed his recreational lifestyle and how this has contributed to his having been so unwell that is now needing such intensive support to recover. Admits to taking much cocaine and also ketamine.’
41. GMC Decision Making guidance says: ‘assessing capacity is a core clinical skill and doesn’t necessarily require specialist input (for example by a psychiatrist). You should be able to draw reasonable conclusions about your patient’s capacity during your dialogue with them. You should be alert to signs that patients may lack capacity and must give them all reasonable help and support to make a decision.’
42. Our adviser says, from the entry on 15 July 2023, it seems reasonable for there to be an assumption Mr L was not delirious and had capacity to engage in conversation.
43. GMC good medical practice guidance says doctors should encourage patients and the public to take an interest in their health and to take action to improve and maintain it. This may include advising patients on the effects of their life choices on their health and well bring and the possible outcomes of their treatments.
44. Our adviser explained this means in the context of Mr L, any admission of drug taking is to be explored, and advice on the way forward. Had it not been discussed, there would be a risk Mr L would not have the information and not be able to make informed decisions in the future.
45. Overall, the evidence indicates the Trust acted in line with the GMC guidance and our complaint standards. We have considered Mr L’s account to reach our decision and recognise his views. On balance, the evidence does not indicate a failing. We therefore decline to investigate this aspect of the complaint.
46. Mr L is concerned this level of inaccuracy in his medical records about him taking drugs. He feels the repeated reference to comments made by him about drug use when he was delirious led to the misdiagnosis of the cause of his seizures and kidney issues.
47. Mr L has explained there was a resolution meeting on 5 December 2023. He says in the meeting the consultant seemed to refuse to take on board what Mr L and his mother said in relation to the taking of ketamine. Mr L says he explained that he had not taken ketamine for some months prior to his first seizure.
48. In the meeting, Mr L also queried why would he have a withdrawal several months after taking it, as there would be limited causal links between this given the passage of time. Mr L feels the consultant would only seem to accept what Mr L said when he was delirious whilst admitted at the Trust, rather than when he was more with it.
49. Our Service Model Guidance states there may be occasions when we decide not to investigate a particular complaint on the basis of it being impractical to do so or the likelihood an investigation would not reach a satisfactory conclusion.
50. We have listened to the local resolution meeting recording. We heard a consultant explain ketamine withdrawal usually appears a few weeks after taking the substance. We also heard Mr L explain he had not taken any ketamine for several months prior to the first seizure and had not taken any between the first and second seizure.
51. We acknowledge Mr L feels the disclosures about alleged drug taking during the time he was confused and agitated should not be relied upon. We understand how this must be frustrating. We have considered Mr L’s account of what happened as evidence. We have weighed that with the records and evidence in the Trust’s complaint response and recording.
52. Whilst we accept what Mr L says about drug use, without additional evidence, it would be difficult to draw a definitive conclusion.
53. We can see the Trust’s response dated 8 September 2023. It acknowledged that Mr L was delirious and said different things at different times. The Trust has fed back to the relevant team that visiting times being extended may have helped. It apologised and would address the labelling of Mr L as an addict, with the colleagues concerned. The Trust said that current documentation will reflect the discussions, and ongoing investigations going forwards (in relation to other contributing factors).
54. The NHS Complaint Standards say organisations empower staff to identify suitable and appropriate ways to put things right for people who raise a complaint.
55. We can see the Trust have accepted what Mr L says about his drug use and put in place a plan to put things right.
56. We have considered Mr L’s account to reach our decision and recognise his views. Overall the evidence indicated it would be impractical to investigate this complaint because we would not be able to reach any further conclusions or outcomes for Mr L.
Conclusion
57. We appreciate the impact these events have had on Mr L and his family and we are glad to hear he has been under the care of the neurologists at the Trust for investigation. We hope Mr L is reassured we have seen no indication of any failings in how the seizures were investigated initially.
58. We recognise the effect of the drug addict label on Mr L. We hope to reassure Mr L that whilst it may not feel like the meeting went as planned, the outcomes were in line with the NHS Complaint Standards.