The Trust has not given Mrs J a diagnosis
18. Mrs J complains the Trust has not diagnosed her episodes, but has prescribed her medication for epilepsy which she may not need. She has felt very anxious, stressed and uncertain about taking medications without a diagnosis and without reassurance.
Investigations and diagnosis
19. NICE guidance on the assessment and diagnosis of suspected epilepsy details how to investigate seizures. Our adviser explains a seizure is an event once or twice, of shaking or a vacant episode (blackout) which is an epileptic event. Epilepsy is a condition where you have had multiple of these events. The guidance says an electroencephalogram (EEG - a test to monitor the electric sensitivity of the brain which can detect disorders) can be carried out to support diagnosis and get more information about the seizure type. Our adviser says most guidance does not require you to do a brain magnetic resonance imaging (MRI) scan, but most neurologists will do this to avoid missing anything which could be causing the episodes.
20. Our adviser says the Trust was correct in suspecting epilepsy from the description of Mrs J’s vacant episodes (blackouts) and as she had multiple, causing her to have falls, and forgetfulness. Mrs J had already had cardiac (heart) investigations to consider other causes, but this did not identify a cause. The Trust did an EEG as well as a brain MRI scan, so it thoroughly investigated possible causes. The Trust suspected focal seizures with impaired consciousness, and the MRI and EEG assisted it in checking this.
21. Our adviser says if the tests (MRI and EEG) come back positive indicating epilepsy, you can give a patient a diagnosis of this as you have a result to confirm this. If the results come back negative and do not indicate a clear cause, then the neurologist must decide whether they think it is a seizure or not. Our adviser says this is subjective and is not always a clear diagnosis of yes or no.
22. In Mrs J’s case, the MRI and EEG results did not come back indicating a clear cause. Our adviser says it is usual practice to not give a patient a diagnosis of epilepsy if the results do not indicate a clear cause, particularly the first time you meet a patient and following the first investigations. They say this is because this diagnosis has major implications and restrictions on a person’s life. So, where results are not clear neurologists do not give a diagnosis straight away and will trial treatments to further investigate before giving a diagnosis.
23. GMC guidance says clinicians should consult colleagues or seek advice from a supervising clinician, where appropriate. It also says they should refer a patient to another suitably qualified practitioner when this serves their needs. The Trust referred Mrs J to the Trust’s epilepsy clinic for further opinion on her episodes and to see if they were confident to provide a definitive diagnosis. The Trust therefore acted in line with GMC guidance when referring Mrs J to the clinic. We appreciate, however, it has taken over a year for the Trust to see Mrs J in the clinic due to its significant wait lists.
24. We can see the Trust did everything it should, in line with guidance, to investigate the cause of Mrs J’s episodes to try and diagnose them. It was correct to suspect epilepsy and trial if treatment for this worked, but we cannot say it could or should have more definitely diagnosed the cause of her episodes. We have found no failing in this aspect of her care.
Prescribed medication
25. Our adviser says there are no further investigations aside from trialling anti-epileptic medications to see if this prevents the episodes. They say there is no specific guidance, but it is a standard approach across neurology to try different anti-epileptic medications such as lamotrigine, levetiracetam and lacosamide for suspected epilepsy. They explain lamotrigine is commonly used to start with, particularly for women as this has fewer side effects and less risk of complications if the patient became pregnant. GMC guidance says clinicians should provide effective treatment based on the best available evidence and prescribe drugs where satisfied these will serve the patient’s needs.
26. They say if a patient reacts to the medication or it is not working, the dose should be changed or it should be reduced slowly and then a new medication can be tried. We can see the Trust gave appropriate advice within its letters to Mrs J’s GP about this, and gave advice to attend A&E if the side effects persisted or became worse. Our adviser says this was correct. We understand Mrs J has concerns about the delays in her GP receiving the letters and advice, which we consider later in our report.
27. If the medication is helpful and symptoms reduce, even though the tests might have been negative, it gives the neurologist more confidence it is epilepsy as the medication only works for that. If it solves the problem, that would likely be the diagnosis. Our adviser also says if the episodes persist it may be that medication does not work, or the dose is wrong. It does not always mean the person does not have epilepsy, so different medications and doses should be tried. They say it is correct to trial one medication at a time to see if there is any benefit from it.
28. We can see the Trust prescribed Mrs J lamotrigine medication to see if this reduced or prevented her episodes. This is in line with what our adviser says should happen and is in line with the GMC guidance above.
29. We understand why taking medication without a diagnosis has been very worrying for Mrs J. Our adviser says, as with any medication, it may cause a reaction, but the benefits of treating the episodes outweighed the risk of leaving her without treatment. They say there are no known significant long term side effects to taking the medications and they are usually well tolerated.
30. The Trust therefore did the right thing in trialling anti-epileptic medications to try and relieve Mrs J’s episodes, reach a diagnosis and reduce the risk of harm to her. We have not identified any failing here.
The Trust did not do follow ups when it said it would and some never happened
When the Trust followed up with Mrs J
31. Our adviser says there are no standards or guidelines on when follow up appointments should happen in neurology, but some trusts have their own local guidance on this. We asked the Trust and it does not have its own guidance on this. It said it would be up to the neurologist to decide if and when they need to see the patient again, and how often, depending on their circumstances.
32. Our adviser says after initial investigations and treatment, it is appropriate for follow ups to take place by telephone. After that, our adviser says epilepsy and seizures are not usually managed by hospitals due to capacity. It is suitable for long term management of this to be by GPs after a plan is in place. Some GPs are able to make decisions about changing epilepsy medication and managing it, but for GPs who do not, they will communicate with the neurologist about what to do.
33. The records do not indicate the Trust needed to follow up with Mrs J regularly or urgently. And our adviser is satisfied with the plans in place to trial medication which was managed through Mrs J’s GP. They say the Trust did the right thing in following up with Mrs J over a longer period to see if her episodes were controlled by the medication. We are also satisfied the neurologist gave appropriate advice to Mrs J’s GP about changes to her medication, and advice to attend A&E if her side effect of a rash persisted or worsened. We understand the Trust did not always send this advice promptly, which we consider as a separate issue later in our report.
34. We have not identified any failings in relation to how and when the Trust followed up with Mrs J. We understand, however, that her concerns also relate to the Trust telling her it would follow up with her by a certain time, but then it either did not follow up with her at all, or did so significantly later than she was told.
The Trust’s communication about follow up
35. The Trust advised it would follow up with Mrs J in four months after her first appointment on 26 May 2021. This meant it was due to follow up with her in September. This appointment did not happen. The Trust’s complaint response says this was an error due to the follow up being incorrectly marked as routine rather than urgent. But in comments to us it says this was not an error. It says the consultant’s clinical judgement did not indicate this was urgent and the service was experiencing significant pressure on clinic capacity so the wait times were longer for both new and follow up patients.
36. In September Mrs J was experiencing side effects of a rash and did not feel the medication was helping. The Trust had had not yet reviewed her, so that month her GP wrote to the neurology department for advice. The consultant wrote back to her GP with advice to reduce her medication, but a follow up appointment between Mrs J and her consultant did not happen. We can understand why this was so worrying for Mrs J, when she had no clear diagnosis, was trialling medication, experiencing no improvement and side effects, and understood she needed to be reviewed in four months. The Trust did not inform her it no longer needed to review her because it had responded to her GP’s contact to it.
37. The next time the Trust followed up with Mrs J was during a telephone appointment on 9 December. The consultant’s clinic letter said they would follow up with her in ten weeks. This would have been around 17 February 2022, but this did not happen.
38. The neurology clinic next followed up with Mrs J by telephone on 12 May, three months overdue. The consultant’s clinic letter said they would follow up with Mrs J in four months. This would have been in September 2022. We cannot see this review took place. On 28 November 2022, the Trust’s complaints department emailed Mrs J to confirm she had been referred to the epilepsy service, advising the current wait time was four to six months.
39. The Trust says the neurology clinic followed up with Mrs J by phone on 11 May, and that this was her eight month overdue follow up appointment from September 2022. The Trust’s timeline shows another follow up appointment in September 2023, before the epilepsy service saw Mrs J in December 2023.
40. We appreciate the Trust has had, and continues to have, significant pressures on its neurology service meaning wait times are much longer than it would like them to be. We understand this is for a number of reasons including the historical backlog caused by the Covid-19 pandemic, industrial action by staff and an increase in the services it was providing as a regional specialist centre for neurology services. We also understand that urgent patients must be prioritised, and we know Mrs J’s appointments were appropriately triaged as routine.
41. The Trust was, however, repeatedly advising it would see Mrs J in timeframes it knew it could not meet. The timeframes provided to Mrs J for her follow up appointments do not reflect the situation the Trust says it was in. It was aware of the pressures it was under, and we cannot see the neurology department were adjusting to this when advising Mrs J when it would be reviewing her.
42. The Trust should have better managed her expectations. We cannot see the Trust was increasing the timeframes it expected it would see her in, even after it had not managed to see her within timeframes it gave previously. At one point it reduced this to say it would see Mrs J in ten weeks, and this review was overdue by three months.
43. Our 'Principles of Good Administration’ say public bodies should be transparent and should give people information and advice that is clear, accurate, complete, relevant and timely. Our principles also say public bodies should tell people if things take longer than it has stated, or than people can reasonably expect them to take.
44. The Trust says at that time it gave the consultant neurologists data about follow up lists and general information was communicated with all of them at the weekly staff meeting. Despite this, what happened in this case indicates there was a communication breakdown, as there were inconsistencies between the neurologist, the neurology clinic support team, clinical lead and complaints team compared to what was happening in reality. The Trust did not provide realistic and accurate information to Mrs J about delays and timeframes for follow up, or explain at the time why it could not review her when it said it would. We cannot see the Trust acted in line with our principles and we have identified a failing.
Impact of the inaccurate information about follow up
45. We have not found failings in relation to how often and when the Trust followed up with Mrs J. We therefore have not found any clinical impact on Mrs J as a result of the Trust not reviewing her when it said it would. We also cannot conclude that her employer or DVLA could have had more accurate information sooner about her condition and that she had not had any more vacant episodes. But we appreciate this would have been beneficial and that this was difficult for Mrs J.
46. We have, however, found a failing that the Trust repeatedly told Mrs J it would review her within timeframes it could not meet. It should have better managed Mrs J’s expectations by providing more realistic timescales on its follow up appointments, as it was aware of the pressures to its service.
47. We understand why on the occasions the Trust did not review her at all, or significantly over the timescales it had told her, this was so concerning for Mrs J. She remained on medication that initially was not improving her episodes, that she had side effects from, without a confirmed diagnosis or any follow up to discuss this with the neurologist. We understand why she has felt so uncertain, in limbo and without support and reassurance from the Trust when it was not reviewing her when it said it would. This caused her to feel very anxious and stressed, and we know this exacerbated what was an already difficult and worrying time for Mrs J.
The Trust did not send clinic letters promptly after her appointments with instructions to the GP about her medication
48. Our ‘Principles of Good Administration’ say public bodies should behave helpfully, dealing with people promptly, within reasonable timescales and should tell people if things take longer than people can reasonably expect them to take. Our principles also say they should treat people with sensitivity, bearing in mind their individual needs, and respond flexibly to the circumstances of the case. Where appropriate, they should deal with people in a coordinated way with other providers to ensure their needs are met. And if they are unable to help, they should refer them to other sources of help.
49. Mrs J had a telephone consultation with her neurologist on 9 December 2021. They noted her skin rash from her anti-epileptic medication (lamotrigine) had not resolved and she continued to have vacant episodes around three times per week with frequent falls. The letter said they had prepared a prescription for another anti-epileptic medication, levetiracetam. They included instructions of how much to have in the first week and thereafter, with instructions to then further increase this until the episodes reduced. It also had information about a suggested dose if her side effects become intolerable.
50. This was important information for Mrs J’s GP, to enable them to prescribe and manage her episodes and symptoms. The Trust sent this clinic letter on 18 February 2022 and the GP received it on 23 February, over two months after the consultation.
51. Coincidently, on the same day of Mrs J’s telephone consultation on 9 December, her GP had also written to her neurologist. The GP sent a copy of a letter about Mrs J’s rash from a dermatologist (skin specialist), who suggested stopping her lamotrigine medication. Therefore around a month later on 7 January, and before the Trust’s 9 December letter was typed and sent to the GP, the neurologist wrote back to the GP advising Mrs J to come off lamotrigine. This means the GP received guidance on what to prescribe on 10 January, despite the original clinic letter only reaching them on 23 February. This was over a month after Mrs J’s consultation.
52. Similarly, the Trust’s clinic letter following Mrs J’s 12 May 2022 appointment was typed on 20 July. The Trust sent it on 2 August, and it reached Mrs J’s GP on 9 August. Mrs J was under the impression her GP had still not received it in September, and she asked a nurse at the Trust to print this in her migraine treatment appointment on 27 September. This is when her GP then made the changes to her prescription set out in the clinic letter. Whilst we cannot see the Trust was responsible for the full delay between May and September in Mrs J’s GP being aware of the need to change her lacosamide (another anti-epileptic medication) prescription, it was for the delay of almost three months between May and August.
53. The Trust acknowledges these delays do not meet its usual correspondence timeframe standards. It says this was due to operational pressures and annual leave absences. It says if deemed necessary the consultant can provide a prescription, this is usually where the medication cannot be prescribed by the GP and generally consultants do not anticipate a lengthy delay in correspondence to the GP and patient. It says clinicians will annotate particularly urgent pieces of correspondence appropriately.
54. We understand the Trust had operational pressures which caused delays in sending correspondence. The Trust should have acted in line with our principles. In our view, the delays of two and three months to type clinic letters are unacceptable. We think there is more the Trust should have done to ensure it sent important letters with vital information about Mrs J’s prescriptions in a timely way, and prioritised this, given it was aware of administrative delays. Alternatively, the Trust could have prescribed Mrs J her medication rather than instructing her GP to avoid delay, knowing there were operational pressures on sending correspondence which it acknowledged in one of the letters.
55. We have therefore found failings in the Trust’s delays in sending clinic letters to Mrs J’s GP in relation to the management of her condition and prescriptions. We consider the impact of this below.
Impact of the Trust’s delays in sending correspondence
56. Mrs J had weaned herself off her lamotrigine medication in preparation to start levetiracetam, as her neurologist told her in December 2021. As her GP did not have the details of this new prescription until January, and as she had weaned off lamotrigine, she went a short period of time without any medication which she found worrying given she was still having episodes and falls.
57. At the time of her 12 May 2022 neurology appointment, Mrs J was doing well on lacosamide and had only had around three vacant episodes the previous month. The consultant advised increasing her dose to hopefully further reduce her episodes, for three months. The earliest the GP could have done this given the Trust’s three-month delay in telling them that is early August. We understand the prescription change did not happen until 20 October, because the GP practice missed the letter in August and Mrs J had to ask for it again. So we cannot hold the Trust responsible for the whole delay, but we can for the initial three months of it.
58. We understand the delay in changing the dose did not cause Mrs J any harm, but she lost the opportunity for the best available treatment for her episodes between May and August. We appreciate throughout these delays this caused Mrs J to feel very anxious, stressed and uncertain about her medications. This was on top of the emotional impact of not getting the follow ups she thought she would. We understand how she came to feel the Trust was not monitoring or managing her condition as well as it should have.
What the Trust has done to put things right
59. The Trust says it has a very high demand in its neurology service and it is working hard to address waiting times by increasing capacity in the service. It says the wait Mrs J experienced for a routine epilepsy appointment was not out of the ordinary at that time. We can see the Trust’s complaints department told Mrs J the wait was four to six months at that time. We have found the Trust was repeatedly telling Mrs J it would see her sooner than it could. There is more the Trust can do to address this to ensure there is consistency across the Trust in understanding and communicating its wait times to patients, to better manage expectations.
60. It also says it is putting on extra clinics for specialities most in need and running triage clinics to provide GP advice and guidance where needed. We appreciate the Trust is under pressure and can see it is taking action to try to alleviate this. We found the issue relates to what the Trust was telling Mrs J, which did not reflect its position.
61. The Trust says at that time it provided consultants with data and information about their follow up lists on request, and that general information about this was communicated at the weekly staff meeting. Despite this, we can see there was still a big difference in what the Trust was telling Mrs J compared to when it was reviewing her. It says the management team are in the process of developing a consultant dashboard to facilitate consultants in seeing up-to-date data and information about wait list times, overdue reviews and other information.
62. It also says the management team responsible for monitoring performance of the secretarial support team closely monitors the typing turnaround times using data and performance indicators so they can address issues as and when they arise.
63. It says appropriate escalations were made in 2022 and 2023 with regard to the neurologist’s administration. Adjustments were agreed with the neurologist regarding their direct clinical activity to allow them necessary time ‘to regain an acceptable position’.
64. We understand this could help in addressing the failings we have identified. We do not yet know what specifically the Trust is doing to address turnaround times for correspondence, so we need to better understand how the Trust is improving this part of its service.
65. In the Trust’s response to Mrs J, it did not provide explanations for why it either did not review her, or did not when it said it would on the occasions she mentioned. It provided a brief response that it had incorrectly listed her as routine rather than urgent, and said it was sorry for the error. We understand from the Trust’s response to us that this is not correct, as it says she was correct to be listed as routine.
66. The Trust has not done enough to consider and address the reasons for this with Mrs J, and it has not acknowledged that on multiple occasions it was telling her it would see her in timescales it could not meet. It has not acknowledged it has got things wrong in its communication to her. It has not apologised for the impact this had on Mrs J.
67. It also says it still managed her care with her GP, which we know was not effective due to the delays in it sending correspondence. Again, the Trust has not acknowledged, or apologised for, the significance of these delays or the impact this has had on Mrs J and the management of her prescriptions. As it did not accept it got things wrong in its response, the Trust has also not addressed its service improvements to Mrs J.
68. There is more the Trust should do to put things right for Mrs J, to acknowledge the failings we have identified and the impact these have had on her. We outline our recommendations below.