Trust medics wrongly diagnosed Mrs R with FND in 2015 and refused to diagnose her illness as encephalitis, stating she has a generic encephalopathy.
11. The Health Service Commissioners Act 1993 states a person needs to make their complaint to us within a year of becoming aware of the problem they want to complain about. As set out within this act of law, we cannot investigate complaints brought to us after one year, unless we consider there is an exceptional or justifiable good reason for the delay in bringing a complaint to us.
12. Where there has been a delay, we use our own policy to consider what might have stopped the complaint being raised sooner and whether the reasons for the delay are reasonable.
13. There are many possible reasons for a delay and so we consider each complaint and delay on a case-by-case basis. We then decide whether we can put our time limit aside and this is something we must consider by law. We have discussed this matter with Mrs R to understand the reasons why she could not bring her complaint to us earlier.
14. Mrs R complains she was originally misdiagnosed with FND in July 2015. FND is a condition that causes neurological symptoms (symptoms related to the nervous system) such as weakness, movement disorders and sensory symptoms which do not result from a physical neurological disease or disorder. Mrs R says that in August 2015, she suffered an acute encephalopathy (a disease of the brain which affects its function or structure) which left her with severe ataxia and dysarthria.
15. Mrs R says she and her family never accepted the diagnosis she received in August 2015 and were extremely vocal about this as they had a complex family history of encephalopathies. A private clinician acknowledged in November 2019 that given her family history of epileptic encephalopathy, her FND diagnosis may have been wrong.
16. In February and July 2022, Mrs R had appointments with a consultant that the Encephalitis Society had recommended. This consultant intended to refer Mrs R for plasma exchange (PLEX, a procedure used to treat autoimmune diseases). Mrs R says she received a letter from the consultant confirming she did not have encephalopathy and was intellectually underperforming. Mrs R says she still has no diagnosis.
17. We contacted Mrs R by email to discuss the timeframe of her complaint. We wanted to find out her date of knowledge (the date when she knew she had a reason to complain) so that we could understand the reason for the delay in bringing the complaint to us.
18. We looked at the evidence in the Trust’s handling of the complaint. We can see from this evidence that Mrs R refers to August 2015 and the consultation as the point when she knew she and her family strongly disagreed with her diagnosis of FND. In further Trust correspondence (for example, correspondence dated 20 January 2020), 2015 is referenced multiple times as the point when Mrs R expressed a concern about her consultation. Mrs R also refers to 2015 in emails to the Trust dated 7 September 2022 but then contests her date of knowledge, stating this only came to her attention in 2022.
19. Although we and Mrs R have different views about the date of knowledge, we believe it was earlier than 2019. In her complaint form to us, she states her family never accepted the FND diagnosis from 2015. In email correspondence from 22 February 2022, she also says her family argued from day one that the diagnosis was wrong. Further to this, Mrs R’s complaint correspondence confirms she is complaining about her admission to hospital on 1 August 2015.
20. In summary, we recognise that in her correspondence with the Trust and with us, Mrs R states her date of knowledge as being much later than 2015. However, we are not persuaded of this, as the evidence we have relied on makes reference to a much earlier date. In establishing the date of knowledge, we consider Mrs R knew she was unhappy with her diagnosis in 2015.
21. We therefore take 2015 as the date Mrs R knew of a reason to complain.
22. Mrs R first complained to the Trust on 17 December 2019, some four years later, and received a response from them on 27 January 2020. Mrs R responded expressing her dissatisfaction on 16 March 2020 and received a final response on 8 June 2020.
23. After receiving her final response from the Trust, Mrs R brought her complaint to us on 14 October 2022.
24. When we received her complaint, 86 months had passed from her date of knowledge. This was 74 months over the 12-month time limit to complain to us.
25. We contacted Mrs R to find out why she did not complain sooner. She stated she had complained to the Trust after attending a private neurology appointment in November 2019, and this was the first time a doctor had agreed her FND diagnosis was wrong. We will address this later in this statement.
26. Mrs R says she received a response on 24 December 2019 and then complained to us. We stated on 3 March 2020 that we could not investigate as there were other routes to pursuing her complaint with the Trust she needed to look into first. Mrs R complained again to the Trust on 16 March 2020, receiving a response on 8 June 2020. Mrs R considers she may have been offered the opportunity to attend a dispute resolution meeting, which she says she would not have attended due to problems with her speech and her dissatisfaction with the Trust.
27. Mrs R also confirmed her daughter had been admitted to a different hospital in March 2019, spending over two weeks in hospital and taking many months to recover. Mrs R says she complained about her daughter’s care at the time and that she was primarily concerned with her daughter’s care rather than her own. Mrs R also gives the impact of the COVID-19 pandemic as a reason for not complaining sooner. She explains that she and her children were advised to shield and that she was more concerned with this than with fighting the hospital’s failures.
28. We paused complaints between 26 March 2020 and 1 July 2020 to reduce the burden on the NHS, which was responding to the COVID-19 pandemic. It would be reasonable to consider this pause when assessing our time limit for Mrs R’s complaint. However, this would only account for three months of a substantial 74-month delay.
29. Similarly, we do not consider shielding during the COVID-19 pandemic to be a justifiable reason for the delay. Testing positive for the virus and suffering major health complications might have slowed down the progress of a complaint but we do not consider the act of shielding alone a persuasive reason.
30. On the basis that Mrs R’s date of knowledge was in 2015, we would have expected a complaint to be with us by around August 2016.
31. Even if we were to consider Mrs R’s date of knowledge to be 26 November 2019, when she attended her private neurology appointment, this would still mean she had brought her complaint to us 34 months after her date of knowledge and 22 months after our time limit had passed.
32. Our expectation is that a person making a complaint will make sure they bring that complaint to us quickly. If the person making the complaint has been responsible for a delay in this process (for example, because they took a long time to make their initial complaint to the organisation or bring the complaint to us), then we would need to consider whether the delay was justified.
33. After receiving her final response from the Trust in June 2020, we can see it took 28 months for Mrs R to bring her complaint to us on 14 October 2022. Mrs R says this was because she felt she was getting nowhere. There was a period of inactivity between the Trust’s final response in June 2020 and December 2021, when Mrs R made a further complaint. We are not persuaded this period of inactivity is justified, even considering the impact of the COVID-19 pandemic and Mrs R’s health and caring responsibilities. We do not believe these reasons were enough of a barrier to stop Mrs R bringing her complaint to us at any time during this 18-month period.
34. We consider the actions of all parties in making our decisions and so we have also considered the Trust’s responsibility in causing this delay. We can see from Mrs R’s initial complaint on 17 December 2019 that the Trust did not take an excessive amount of time to send a response, which was issued and dated 27 January 2020. Mrs R expressed dissatisfaction with the Trust’s response on 16 March 2020 and received a response on 8 June 2020. Again, we do not consider this an excessive delay to the complaint process.
35. We recognise Mrs R has been through a difficult time with her health and caring responsibilities, but Mrs R could have brought her complaint to us sooner. Having looked at the reasons for the delay, we do not consider these persuasive enough for us to waive the time limit for complaining. We will therefore take no further action on this aspect of her complaint.
A Trust clinician acknowledged in November 2019 that Mrs R may have been misdiagnosed with FND and the Trust did not then offer her any treatment.
36. As outlined earlier in this statement, the Health Service Commissioners Act 1993 states a person should bring their complaint to us within a year of first becoming aware they need to complain.
37. On 26 November 2019, Mrs R paid privately to see a geneticist, who agreed she was not suffering from FND. Mrs R complains that at a private appointment with Professor V, he accepted that the FND diagnosis was wrong, taking into account her family history and other factors.
38. Mrs R says that despite this acknowledgment, the Trust has done nothing to help her or put right the misdiagnosis. Mrs R says it is completely unacceptable that after Professor V had acknowledged her diagnosis was wrong in November 2019, the Trust then did nothing about it.
39. Mrs R says the Trust should have offered her tests and an MRI at the very least. Mrs R says she is certain she has seronegative encephalitis on the basis that her daughter has responded so well to treatment for this condition.
40. In the Trust’s response on 22 June 2022, it states it did not refer Mrs R for tests because it had carried out extensive investigations during her two previous hospital admissions and there were no signs of any serious neurological disease.
41. The Trust’s response also states that as Mrs R’s examinations appeared normal and her symptoms could not be linked to any underlying disease, it did not feel further investigations were necessary.
42. Mrs R says she may have been offered a dispute resolution meeting. However, she says she would not have accepted this because her speech problems at the time would have made this difficult. She says her negative feelings about the Trust’s incompetence in treating her would also have made such a meeting pointless.
43. We consider Mrs R would have known after her appointment in November 2019 that she needed to complain. This is because the doctor involved in her care had acknowledged her diagnosis of FND was incorrect and she would therefore have expected to receive treatment after this appointment.
44. After her private appointment in November 2019, Mrs R complained to the Trust on 17 December 2019 and received a response from them on 24 December 2019. Mrs R then complained to us on 3 March 2020. However, we closed the case as it was too soon for us to look into the complaint.
45. Mrs R did not pursue her complaint with the Trust any further until 8 December 2021. Therefore, for a period of 21 months, nothing was happening with the complaints process. Mrs R says her children’s health issues and COVID-19 are the reasons for her delay in complaining to us.
46. In an email on 18 March 2023, Mrs R says she had complained to another hospital about her daughter’s treatment so she says she was primarily concerned with her daughter’s care during that time.
47. We recognise the impact on Mrs R of having to deal with her own health matters and with her caring responsibilities for her children. However, we have had to consider the reasons for this 21-month period of inactivity and whether these reasons meant Mrs R had no opportunity at any time during this period to make her complaint or to ask for help from others in doing so.
48. Regardless of their circumstances, a person making a complaint needs to be aware of the complaint procedure and any time limits or conditions so they can manage the situation and ask for support. They could get support from a third-party agency such as an advocacy service, the third sector (voluntary sector) or Citizens Advice. We are not aware Mrs R did anything during this period to try to get this kind of support.
49. Therefore, we do not consider that the impact of the COVID-19 pandemic and Mrs R’s health and caring responsibilities can fully justify the period of inactivity, especially as Mrs R tells us she was actively pursuing a separate complaint about her daughter’s treatment during this time.
50. We consider Mrs R could have brought this aspect of her complaint to us sooner and the reasons she has given for the delay are not persuasive enough for us to waive the time limit for complaining. We will therefore take no further action on this aspect of her complaint.
In February 2022, after a medical records request, Mrs R discovered there were abnormalities the Trust did not reveal to her at the time of the MRI scan in 2015.
51. We considered the General Medical Council’s ‘Good Medical Practice: Domain 1: Knowledge Skills and Performance’. These guidelines state clinicians must record their work clearly, accurately and legibly and that documents they make (including clinical records) to formally record their work must be clear, accurate and legible.
52. Mrs R complains that in January 2022, she had an MRI scan which showed remarkable cerebellar ataxia (impaired coordination resulting from abnormalities in the cerebellum) and white matter lesions (deterioration of white parts of brain containing nerve fibres). As a result, she asked for her medical records. These records showed an MRI scan she had in 2015 had revealed abnormalities – specifically, white matter lesions which were excessive for her age. Mrs R complains the Trust had told her in 2015 that the MRI was normal and says she was not aware of any abnormalities until January 2022.
53. The Trust’s response recognises Mrs R and her family have suffered significant distress. It clarifies there is cerebellar degeneration but that this is minimal. Its response also acknowledges clinicians can interpret MRI scans differently and apologises for the impact these different interpretations have had on Mrs R and her family.
54. Mrs R was unhappy with this response and sent an email expressing her dissatisfaction to the Trust, who responded to her on 4 October 2022. The Trust offered Mrs R an appointment with Professor V and a Trust neuroradiologist to look over the abnormalities shown in her historic scans and consider the reasons for the inconsistencies.
55. The Trust also offered Mrs R and her family a face-to-face appointment with two other clinicians, Professor W and Professor H, to discuss the scans.
56. We recognise it would have been worrying for Mrs R to look at her medical records and find inconsistencies in the information the Trust had given her, especially as it told her the first MRI scan was normal. The Trust has acknowledged these inconsistencies and offered to put things right.
57. As an outcome to her complaint, Mrs R would like doctors to be accountable and to acknowledge how badly the Trust has failed her and her family. Mrs R would also like financial compensation for seven years of mental anguish she has experienced due to her misdiagnosis.
58. We considered the action the Trust has taken since this happened. We use our ‘NHS Complaint Standards’ to look at what the Trust did to deal with the complaint and put things right.
59. We cannot accept that the inconsistencies between the scans caused Mrs R seven years of anguish. We consider this injustice (negative effect) began when she received her records in 2022 and first learned of these inconsistencies.
60. We can see the Trust has apologised to Mrs R and explained why clinicians might have different views about scan results. The Trust looked at Mrs R’s historic scans on 5 September 2022 and has made an appointment with her to discuss the matter and answer any questions she has. We consider the Trust has acted relatively quickly to explain what went wrong and put things right, in line with our ‘NHS Complaint Standards’.
61. We carry out precedent checks, looking at previous complaints to see if there are ‘systemic’ (organisation-wide) issues that the Trust needs to address. We have not identified any trends or complaints similar to the type Mrs R has brought to us. Therefore, we do not consider organisation-wide changes are needed in this case.
62. Guided by our Service Model, we consider whether an organisation has done enough to resolve a complaint. Our severity of injustice scale helps us decide in a transparent and consistent way what type of injustice (negative effect) the person complaining has experienced and what it is appropriate to do to put things right.
63. We do not consider this injustice to fall into a high level of severity on this scale, as it does not involve an irreversible life-changing injury, loss of life or similar. We consider it falls into either level one or level two on the scale. A level one injustice is a failing that has caused annoyance, frustration, worry or inconvenience. This type of injustice typically results from a single (one-off) fault, where the effect on the person complaining is of short duration, with no other negative effects or ongoing wider impact. A level two injustice is a more serious one-off fault which needs more than an apology to put right.
64. Here, we can see the Trust has apologised and has tried to contact Mrs R to explain matters and review the historic scans. We consider this is a fair, reasonable and proportionate way of resolving the matter and so we do not consider that financial compensation is suitable.
65. Our Service Model states that we must decide what steps are suitable to resolve a complaint. To make sure our decisions are consistent, we are also guided by our Typology of Injustice, which is a record of similar complaints that have been made in the past.
66. This situation did not cause Mrs R any financial loss and the injustice lasted for a much shorter period than seven years. As we believe the Trust has taken fair and reasonable action to put things right, we consider there is no outstanding issue and will take no further action.
67. We thank Mrs R for bringing her complaint to us.